research buddy definition

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Research Buddy partnership in a MD–PhD program: lessons learned

Daniel j. gould.

1 Department of Surgery, St. Vincent’s Hospital, University of Melbourne, Melbourne, VIC Australia

Marion Glanville-Hearst

Samantha bunzli.

2 School of Health Sciences and Social Work, Griffith University, Nathan Campus, Brisbane, QLD Australia

3 Physiotherapy Department, Royal Brisbane and Women’s Hospital, Brisbane, QLD Australia

Peter F. M. Choong

4 Department of Orthopaedics, St. Vincent’s Hospital, Melbourne, VIC Australia

Michelle M. Dowsey

Associated data.

Not applicable.

Background and aims

There is increasing recognition of the importance of patient involvement in research. In recent years, there has also been growing interest in patient partnerships with doctoral studies students. However, it can be difficult to know where to start and how to go about such involvement activities. The purpose of this perspective piece was to share experiential insight of the experience of a patient involvement program such that others can learn from this experience.

This is a co-authored perspective piece centred on the experience of MGH, a patient who has had hip replacement surgery, and DG, a medical student completing a PhD, participating in a Research Buddy partnership over the course of over 3 years. The context in which this partnership took place was also described to facilitate comparison with readers’ own circumstances and contexts. DG and MGH met regularly to discuss, and work together on, various aspects of DG’s PhD research project. Reflexive thematic analysis was conducted on reflections from DG and MGH regarding their experience in the Research Buddy program to synthesise nine lessons which were then corroborated with reference to published literature on patient involvement in research. These lessons were: learn from experience; tailor the program; get involved early; embrace uniqueness; meet regularly; build rapport; ensure mutual benefit; broad involvement; regularly reflect and review.

Conclusions

In this perspective piece, a patient and a medical student completing a PhD reflected upon their experience co-designing a Research Buddy partnership within a patient involvement program. A series of nine lessons was identified and presented to inform readers seeking to develop or enhance their own patient involvement programs. Researcher-patient rapport is foundational to all other aspects of the patient’s involvement.

Plain English summary

The importance of patient involvement in research is gaining recognition. Existing research centres, as well as those that are just getting started, need to find their own way to involve patients and community members. However, learning from the experience of others is crucial to ensure every effort is made to do this in a fruitful way. Therefore, we aimed to share our experience and provide a list of lessons learned to help other researchers and patients get started and work together effectively. Our research centre developed a framework for involving patients in joint replacement research. Part of this framework is a ‘Research Buddy’ program, where a research student partners with a patient so that the research they conduct is more relevant and applicable to the target population. In our case, the research student partnered with someone who had a hip replacement to develop and test a questionnaire for an interview study about artificial intelligence in shared decision-making. The student and patient worked together and wrote this perspective piece outlining nine lessons so readers can learn from their experience of this program. The lessons were: learn from experience, tailor the program, get involved early, embrace uniqueness, meet regularly, build rapport, ensure mutual benefit, broad involvement, regularly reflect and review. People interested in starting, or improving, their own patient involvement activities can learn from our experience. These lessons will need to be adapted to fit the purpose and unique situation of other researchers and patients who have different needs and circumstances.

Introduction

There is growing recognition of the importance of patient and public involvement and engagement in research [ 1 , 2 ]. However, it can be difficult to know where to begin and how to go about it. Sharing experiential knowledge is critical for different groups seeking to develop and deploy their own programs and strategies [ 3 ]. This is because a one-size-fits-all approach will not address the culture and context of the unique settings in which these programs take place [ 4 – 7 ]. Rather, strategies should be tailored to each unique setting [ 8 ]. An in-depth description of the experience of the patient involvement program in a particular context, including the nature of the program and the challenges overcome, provides others with ideas and examples they can modify to suit their own needs [ 1 , 3 , 9 ]. These other groups can read about the experience of others and possibly avoid some pitfalls while harnessing the strengths of the program. This is not intended to restrict creativity nor to provide a prescriptive roadmap, but rather to provide an experiential account of the nature of engagement in a particular setting and offer suggestions for ways in which engagement can take place.

In recent years, there has also been growing interest in efforts to involve patients in doctoral studies [ 5 , 10 – 17 ]. This presents a unique opportunity to instil recognition of the importance of patient involvement early in the career of researchers and equip them with the skills and experience to facilitate meaningful involvement. It simultaneously offers patients an opportunity to partner with researchers in this formative stage of their career as they develop their research interests and approach to research.

Aims and rationale

The aim of this perspective piece was for the first two members (DG and MGH) of a Research Buddy partnership (described below in the ‘Context’ section) to critically reflect on their experience of this involvement activity throughout the course of a MD–PhD program.

Through this reflective process, lessons learned through experience were consolidated such that they can be of benefit to others seeking to learn from this experiential insight as they establish or improve their own patient involvement programs [ 1 , 3 , 18 – 20 ]. We also provided a detailed description of the context in which this Research Buddy partnership took place, to provide readers with a more complete understanding of the way in which this context influenced the partnership such that readers can consider the nature of their own unique situation and how this might impact upon patient involvement efforts [ 21 ].

Overview of structure of this perspective piece

Definitions.

Theoretical Underpinnings.

• Method of Patient Involvement throughout MD–PhD program

Method of reflection in this perspective piece

Findings—Lessons Learned.

Definitions

The body of literature in the patient involvement space is fraught with complex and nuanced terminology [ 22 ]. Therefore, the purpose of this section is to clarify the terminology and definitions used. Influential stakeholder involvement literature, as well as recent publications, were reviewed to select widely-used and functionally relevant terminology for this perspective piece [ 1 , 22 – 33 ]. The other critical aspect of the rationale for selecting these terms and definitions was that they were agreed upon with the patient partner, MGH, as they accurately described the nature of her involvement.

Terms used in this paper include the following: patient, involvement, partnership, and co-design.

The term ‘patient’ was used because this perspective piece concerns involvement with patients as distinct from members of the public. While this term may invoke the image of an individual seeking care, in the context of involvement it also refers to individuals with experience of a health condition and its management [ 28 ], which in this case is total joint replacement surgery.

Building upon this is the definition of ‘involvement’, which is commonly accepted to refer to research done ‘with’ or ‘by’ patients rather than ‘for’, ‘to’, or ‘about’ them [ 30 ]. One specific type of involvement is the ‘patient partnership’, in which patients are embedded in various research activities at different levels and in multiple stages of the research process [ 1 ]. A particularly powerful example of a patient partnership is the Research Buddy program, which has been described previously as a program in which a doctoral student works closely with a patient throughout their project [ 13 ] and which was also described and reflected upon later in this perspective piece in the section ‘Method of Patient Involvement throughout MD–PhD program’.

Finally, the term ‘co-design’ was used in this piece to describe the active, voluntary process of researcher and patient partner working together on the design of a PhD project and its constituent studies, as this terminology is appropriate for the timeframe in which doctoral studies typically take place [ 22 , 32 – 35 ].

Theoretical underpinnings

Theory development was not an aim of this perspective piece. However, it is important to describe the theoretical underpinnings of the patient involvement program.

There are three main approaches to patient involvement in research: epistemological, consequentialist, and emancipatory or moral [ 33 , 36 , 37 ]. The epistemological approach recognises the fact that patients have lived experience of a health condition that can be of benefit to the research by broadening the perspective of researchers. The emancipatory approach recognises that patients have a right to be involved in publicly funded research that impacts upon them or the care they receive, and consequently researchers have a responsibility to involve patients. Finally, the consequentialist argument states that involvement can improve the design, conduct, and reporting of research.

Primarily, the emancipatory argument motivated the formation of the involvement program described in this perspective piece. Furthermore, patient involvement can lead to more ethically sound research [ 38 ], and this was recognised in the work reflected upon in this piece as MGH assisted DG in the ethics application process for the PhD research projects through document review. However, it was also recognised that the quality and relevance of research conducted at the research centre could be improved through involvement of a patient with lived experience of joint replacement surgery. Therefore, the consequentialist and epistemological arguments also underpinned the involvement program.

Recent literature has also advocated for a pragmatic approach to patient-oriented research by utilising patient involvement to ultimately improve health outcomes for affected individuals [ 39 ]. These authors recognised that achieving such impact is a complex task and, as such, mixed methods approaches to research are encouraged to harness the strength of both quantitative and qualitative research methodologies. This is particularly relevant to the current perspective piece, which describes patient involvement in a mixed methods PhD project on a topic of clinical relevance aimed to improve outcomes for patients.

Finally, the word ‘perspective’ was intentionally selected instead of the term ‘representative’ because it is unrealistic and unfair to ask a single patient with their own unique experience to generalise their experience to represent that of all patients with the same health condition. Rather, patient involvement was incorporated to broaden the perspective of the researchers while they co-designed research with the patient [ 36 , 40 ].

A detailed description of the context in which the patient involvement program took place facilitates comparison to one’s own context such that the potential applicability of a framework and experience can be considered in detail [ 6 , 7 ]. This is not intended to limit the generalisability of the findings reflected upon in this perspective piece. Rather, the specific context in which the patient involvement partnership and activities took place is described in detail such that readers can accurately compare this context to their own.

The patient involvement program described in this perspective piece took place in an Australian National Health and Medical Research Council Centre for Research Excellence for Total Joint Replacement, seeking to O ptimise P atient o U tcomes and S election for Total Joint Replacement (OPUS). OPUS is embedded in a hospital in Melbourne, Victoria, which is a tertiary referral centre for total joint replacement (TJR), providing care for people from a broad range of geographical regions, socioeconomic backgrounds, and cultures [ 41 ]. OPUS brings together clinician-researchers with backgrounds in orthopaedic surgery, nursing, and physiotherapy, as well as trialists, epidemiologists, health economists, statisticians and qualitative researchers. It comprises researchers at various stages of their careers, including graduate research students.

The patient involvement program at OPUS was developed and launched in 2020 and has been described previously [ 42 ]. The program involves a four-tiered framework of involvement (see Fig.  1 ). Table 3 of this prior publication also outlines the remuneration fee schedule according to which MGH was remunerated for her time. This prior publication used the term ‘consumer’, therefore, for consistency, this terminology is used below when describing the framework.

Proposed level of involvement for consumers and community members presents different opportunities of participation and the relevant benefits to researchers

This Figure was made available under the Creative Commons Attribution 4.0 ( http://creativecommons.org/licenses/by/4.0/ ).

The Consumer and Community Advisory Group (bottom of Fig.  1 ) oversees the operations of the CCI program. It is chaired by a consumer (MGH, co-author on this paper).

This perspective piece details the experience of a Research Buddy, Tier 3 as shown in Fig.  1 , and an MD–PhD candidate at OPUS. An MD–PhD candidate is a medical student who takes time out from their clinical studies to complete a PhD. The details of this Research Buddy program are described in the next section.

Method of patient involvement throughout MD–PhD program

The Research Buddy program reflected upon in this piece took the approach of broadening the perspective of the research team by including the voice a patient with lived experience of a health condition [ 43 ]. This is distinct from an approach which would seek to achieve representativeness from one patient partner on behalf of all patients with a shared lived experience, which would be unrealistic [ 31 , 44 ].

The focus of this piece is on the Research Buddy partnership comprising authors DG and MGH. In this section, DG and MGH reflected upon their expectations prior to the commencement of the Research Buddy program and how their actual experience played out.

DG was a final-year postgraduate medical student in 2019, carrying out a research project on risk factors for readmission following total knee replacement (TKR) surgery. The opportunity arose to enrol in a PhD to expand upon this work, which led to the deferment of DG’s final year of medical school in order to complete a PhD as part of an MD–PhD program [ 45 ]. Building upon the research into risk factors for readmission following TKR, the PhD centred around the development of a clinical risk prediction tool utilising machine learning. DG, along with his PhD supervisors (authors MD, SB, and PC) felt that the strong clinical focus of the MD–PhD program would position it well for close involvement with a Research Buddy. MGH had previously participated, as a subject, in a study conducted by MD and PC investigating the impact of a mindfulness program on recovery post-surgery for patients undergoing total hip replacement (THR) [ 46 ]. MGH reached out to MD regarding the findings of the mindfulness study, coincidentally while MD was establishing the patient involvement framework at OPUS and seeking volunteers for the Research Buddy role. MGH subsequently embraced the opportunity and volunteered to be DG’s Research Buddy approximately 6 months after the official commencement of the PhD. MGH decided to take part specifically in DG’s project because she wanted to learn more about research, had a keen interest in artificial intelligence and machine learning and its application to lower limb joint replacement surgery, and has had a lifelong interest and involvement in academia. This presented a tangible opportunity to make a substantial impact on the direction of the research and cement its clinical, stakeholder-focused approach, and MGH felt her interests and experience aligned most closely with DG’s project [ 47 ].

During this formative stage of the PhD project, MGH and DG worked together to define the scope and structure of the Research Buddy program. There was a shared expectation of open-ended discussions and regular contact with updates on the research. Neither DG nor MGH had been involved in such a patient involvement partnership before, therefore they did not have rigid expectations about the manner in which the partnership would unfold. It was decided that regular monthly meetings would facilitate the development of rapport, ongoing discussion of ideas for the PhD project and opportunities for involvement its constituent studies, and the opportunity for regular updates on progress.

The first part of DG’s PhD project discussed in these meetings was the systematic review, which was in the manuscript drafting stage and benefited greatly from MGH’s input on the clarity of the language [ 48 , 49 ] and ensuring the pertinence and importance of the topic were clearly communicated. Patient involvement in systematic reviews has been reported extensively in the literature [ 32 , 50 – 52 ], and it was an opportunity for MGH to gain familiarity with the topic at the foundation of the PhD project. More broadly, the regular monthly meetings were critical in defining the overall scope and purpose of the PhD project. Specifically, during the early stages it was difficult to determine how to make the research more clinically relevant. MGH had a background in occupational therapy and medical anthropology and had previously been involved in qualitative interview projects in which she interviewed participants and coded transcripts. The idea of a qualitative study exploring the views of TKR patients on the use of artificial intelligence and machine learning for risk prediction in shared clinical decision-making was already being developed, and MGH felt this was a fitting opportunity to be involved given her personal journey as a patient and her prior academic and research experience. MGH was involved as a co-author on the qualitative study and made a substantial contribution by pilot-testing the interview guide, contributing to the reflexive thematic analysis, and preparing and editing the manuscript for publication.

Next, MGH reviewed all of the ethics approval application documents for the studies comprising DG’s PhD project. Not only did this improve the clarity of the documents in a similar way to MGH’s review of the systematic review manuscript, but it also led to the development of more ethically conscious research by incorporating a patient’s perspective into the application [ 38 ] and helped DG to clarify the way these studies related to one another and formed a cohesive program of research.

Beyond the specific elements in which MGH made a direct contribution, DG’s reflection upon the stakeholder involvement in the form of the Research Buddy program prompted a shift in focus from machine learning to enhance predictive performance of the TKR readmission prediction model, to stakeholder involvement and engagement in the whole process of developing clinical risk prediction models, including not only patients but also clinicians [ 29 , 53 ]. In light of this, thanks to MGH’s Research Buddy input, DG designed the PhD project with stakeholder involvement embedded throughout.

At the time of writing this perspective piece, the main studies of the PhD project had been completed and DG was in the final stages of thesis write-up following feedback provided by MGH on the first full draft. The overall focus of the PhD project is on co-design with stakeholders, inspired by the Research Buddy partnership with MGH and cemented by exploration of the literature [ 24 , 54 – 56 ].

The PhD project centres around the development of a machine learning model to predict 30-day readmission [ 57 ] in people undergoing TKA surgery years [ 58 , 59 ] for osteoarthritis (OA) [ 60 ], co-designed with clinicians and patients [ 61 ]. The project is divided into four components, each comprising at least one main study. While MGH’s involvement in the project overall has been outlined above, what follows is a brief description of each part of the PhD project as well as the level [ 29 ] and phase [ 62 ] at which MGH was involved. While a high level of involvement was aimed at from the early phases of each part of the PhD project, it is recognised that higher levels of involvement are not automatically more desirable [ 27 ] and, since some aspects of the project were already underway when MGH and DG commenced the Research Buddy program, flexibility and responsiveness to the realities of the circumstances were of utmost importance in deciding with MGH at what level she wanted to be involved.

• i. Level = Involve
• ii. Phase = Design and preparation, dissemination
• ii. Phase = Dissemination
• i. Level = Collaborate
• ii. Phase = Design and preparation, conduct and implementation, and dissemination

Rather than speaking for the patient, it is important for the patient to speak for themselves. Prior reflective work on patient involvement in doctoral research adopted this approach to great effect [ 5 , 14 ]. This piece was therefore co-written by MGH and DG, the two members of the inaugural Research Buddy partnership at OPUS.

Pertinent elements of the GRIPP2 (Guidance for Reporting Involvement of Patients and the Public) checklist [ 70 ] were adhered to while writing this piece.

The experiential insight gained by DG and MGH through their involvement in the Research Buddy program was consolidated in regular meetings throughout DG’s PhD project. Additionally, DG and MGH conducted an informal interview using questions informed by prior literature in which patient advocates from various patient involvement programs in the UK were interviewed [ 9 ]. This interview was audio recorded and transcribed. The transcript was then analysed using reflective thematic analysis [ 71 ] in which themes were generated inductively by DG and MGH based on MGH’s responses to the questions in the interview, informed by their shared experience in the Research Buddy partnership. These themes were then synthesised and refined into lessons, inspired by prior patient involvement literature which has used thematic analysis in a similar way to generate lessons and recommendations [ 1 , 3 , 55 , 62 , 72 , 73 ].

A literature search was then carried out to identify literature reviews which contained lessons from, or recommendations for, patient involvement [ 1 , 5 , 13 , 15 , 28 , 35 , 62 , 74 , 75 ]. These reviews were used to corroborate the findings from our own inductive analysis and reflection.

DG and MGH derived these lessons by reflecting primarily on their experience in the Research Buddy program. However, MGH was embedded in various other patient involvement activities at the research centre (OPUS), therefore some of these lessons will be broadly applicable beyond Research Buddy partnerships. This will depend on the patient’s desired level of involvement, and it is advised that readers are flexible in their interpretation and implementation of these findings.

Findings: lessons learned

Lesson (1) learn from experience.

Don’t go in completely blind. Learn from the experience of others as much as possible. Bring in experienced patient partners, and researchers experienced in patient involvement, who can offer advice on promising avenues to explore as well as flagging those which are less likely to be fruitful. For example, as part of the Research Buddy program reflected upon in this perspective piece, Carol Vleeskens was consulted to conduct a training session attended by both MGH and DG. Carol was a co-author on the publication outline OPUS’ patient involvement framework [ 42 ] and has extensive experience in patient involvement [ 76 ]. MGH was then involved in preparing an orientation day for prospective patient partners at OPUS, which she also attended.

Another powerful resource is published work on the experience and appraisal of other researcher-patient partnerships sharing their experience [ 5 ].

This lesson is pertinent to consider both in preparation for partnering with patients in order to maximise the likelihood of success prior to launching involvement programs [ 8 , 13 , 48 , 77 ], as well as for ongoing appraisal and improvement of existing programs based on patient partner feedback [ 1 ].

Lesson (2) tailor the program

A one-size-fits-all approach does not work. Patient involvement programs should be bespoke. They should be tailored to the unique context of the research centre engaging the patients [ 5 , 78 ]. Learning from the work of others is critical for generating ideas about how one’s own program could take shape [ 78 ], but it is equally important to modify these programs so they are fit for purpose.

Tailoring the patient involvement program has been emphasised in prior literature as a critical component of fruitful involvement through the translation of general principles into context-specific systems and actions [ 4 , 5 , 8 , 15 , 35 , 74 ].

Lesson (3) get involved early

If possible, involve patients in discussions where ideas are generated for research projects. Allow ample time to include patients on ethics applications and governance approvals to ensure they can make a meaningful contribution to the research.

Integrating patient involvement in earlier stages of research helps to facilitate truly patient-led research. Based on the experience outlined in this perspective piece, there are two main ways in which this can be done. First, patient involvement can be embedded in the ongoing work of established research centres as well as the commencement of work at new research centres in order to identify research priorities and steer the direction of research activities [ 4 , 7 ]. Second, in the style of Research Buddy partnerships, patients can be partnered with PhD students in order to co-design the program of research in a meaningful way by embedding engagement and co-design at the beginning of the student’s project [ 19 ]. It is not difficult to imagine a pipeline in which researchers collaborate with patients to generate ideas and then these ideas are translated into PhD research projects with patients.

Having patients engaged at these different stages of idea-generation and research project design could have the added benefit of anticipating and addressing challenges likely to arise in complex research projects such that solutions can be suggested proactively [ 29 ].

Early involvement has been demonstrated or recommended numerous times in a diverse range of contexts and for different levels of involvement [ 5 , 7 , 15 , 28 , 35 , 43 , 75 ].

Lesson (4) embrace uniqueness

Patients bring a wealth of unique experience. They should be treated as individuals with their own unique characteristics, experience, and insight [ 79 ]. Embrace their unique skills and experience. Throughout regular meetings and correspondence, various aspects of the patient’s experience may enable them to bring a unique perspective to the research which researchers could not have anticipated.

Embracing uniqueness of patient partners has been found to encourage more inclusive stakeholder involvement by demonstrating a flexibility in the researchers and responsiveness to the individual needs, experiences, and preferences of people seeking to be involved [ 1 , 5 , 35 , 48 , 77 ].

Lesson (5) meet regularly

Meet regularly, right from the start, even in the absence of a clear idea of what to do in terms of exactly how the patient will be involved. The level and nature of involvement can be collaboratively defined through these regular meetings.

Be open to a variety of forms the patient’s involvement could take and be willing to engage in some trial and error. Some ideas will not pan out, and that is just part of the process. Be willing to persevere and adapt. For example, during the qualitative study conducted as part of DG’s PhD project, MGH attempted cross-coding of the qualitative interview transcripts using the coding framework being developed by DG and author SB. However, MGH found that her style of coding based her prior experience was not functioning as well as it had for previous projects. DG and MGH attempted different styles and continued to discuss their findings in their regular monthly meetings, however ultimately this cross-coding exercise was abandoned as it was becoming quite convoluted and MGH felt more comfortable discussing the transcripts and contributing to the discussions around the development of themes through reflexive thematic analysis.

Both DG and MGH had an openness that resulted in these meetings being fruitful beyond the pragmatic aspects of setting the research agenda and tracking progress; they were critical in building rapport. Even when there were no specific research updates, the regular meeting time was maintained and utilised for an opportunity to discuss topics related to the research.

Regular meetings are a critical component of impactful patient involvement programs reported in the literature [ 15 , 35 , 62 , 75 ] as they facilitates ongoing communication, continuous feedback, and strong rapport-building as expanded upon in Lesson 6.

Lesson (6) build rapport

Establishing trust and rapport is critical to the success of the program. Put in the time. Create an environment in which frank and open discussions are encouraged. Follow through on action items from meetings and email discussions. Respect the patient’s autonomy while supporting them in their role. Listen to the patient and take their feedback into account. Demonstrate to the patient how their input is influencing the research. This designated time to meet and talk openly was critical for building rapport, which is arguably the most important component of patient involvement to increase the likelihood of success [ 37 , 80 ]. The centrality of rapport to the overall success of patient involvement in research is reflected in the large volume of diverse literature recognising its importance [ 1 , 5 , 17 , 28 , 30 , 35 , 62 , 73 , 75 , 81 – 84 ].

Lesson (7) ensure mutual benefit

Patients are more engaged when there is something in it for them. Ensure the interaction is mutually beneficial. For example, patients might learn more about their condition, or the condition of those they care for, through the patient involvement program [ 85 ].

This pragmatic aspect of involvement has been recognised in the literature detailing meaningful and impactful involvement activities that recognise the importance of ensuring the involvement benefits the research, the researchers, and the patient partners themselves [ 1 , 19 , 35 , 62 , 75 , 83 ].

The nature of a successful patient involvement program, in which there is rapport, mutual respect, and open discussion, is associated with a certain degree of passive learning simply by the two parties being in contact with one another [ 85 ]. Without any specific educational component to the program, regular and open communication regarding a common focus in the context of a research centre or program can have the effect of educating the patient about research [ 53 ], and the researcher about the patient’s lived experience of their condition [ 72 , 86 ]. Patients may also learn more about their own condition, its management, and current research being done to further understanding about it [ 85 ].

Lesson (8) broad involvement

It is beneficial to have the patient embedded in the broader patient involvement activities at the research centre, not just the Research Buddy (or equivalent) program. This may enable the patient to participate in broad discussions about current research and setting the direction of future research.

This is important for contextualising the Research Buddy’s work and enhancing their understanding of the way in which it fits into the broader body of work being conducted at the research centre in which the program is taking place. This is not to say patient partners should be stretched beyond their limit, but rather that they are not forced to limit themselves to one project and instead are encouraged to broaden their perspective through opportunities to be involved in varying capacities in other research projects and activities depending on their interests and capacity [ 28 , 35 , 82 ].

Lesson (9) regularly reflect and review

It is not enough to have good intentions. Having a framework is also critical, but the patient’s role may evolve over time and ethical considerations related to their involvement also evolve. It is easy for the patient’s role to devolve into tokenism despite the best intentions [ 22 ]. Regular meetings incorporating feedback from patient partners on their involvement in the research are critical to ensuring the patient’s role as partner in the research is respected and maintained. This requires transparency on the part of the researcher regarding how the patient’s involvement is influencing the research. Researchers must also be open to feedback from patients that may indicate they are not satisfied with their involvement and adjustments to their involvement may be required.

One potential way in which the patient partnership can break down is for researchers to treat them less like partners in the research process and more like participants in quasi-qualitative research by simply calling upon patients to complete surveys or answer questions as if in a qualitative interview. This is problematic because patient involvement in research is distinct from qualitative research and must be treated as such, but vigilance and effort is required to maintain the boundaries between the two [ 22 ].

Beyond this specific problem, regular reflection and review are broadly applicable to every aspect of patient involvement to ensure the patient’s involvement is meeting expectations as these expectations evolve throughout the research project alongside changes in the patient’s capacity and interests.

Regular review is crucial to ensure ethical principles are being adhered to at all times as the patient’s role evolves. Circumstances change, both intentionally and unintentionally, so it is critical to have discussions specifically dedicated to reviewing the patient’s role and ensuring they are still meaningfully involved and ethical principles are adhered to [ 87 ]. There may be occasions on which the patient’s preconceived ideas need to be discussed and worked through.

Building upon the other lessons outlined in this perspective piece, rapport based on mutual respect, coupled with regular meetings, provide the structure and nurture the culture necessary to facilitate continuous feedback as well as regular designated touch points at which reflection and review can take place [ 5 , 13 , 28 , 35 , 62 , 74 , 75 , 83 , 87 ].

Summary of findings

In this perspective piece, a patient partner with lived experience of total joint replacement surgery (MGH) and a MD–PhD candidate (DG) reflected on their experience in a Research Buddy program throughout a PhD project. Their aim was to provide experiential insight such that other researchers and patient partners can learn from their experience as they develop and refine their own patient involvement programs. Inductive thematic analysis was applied to the transcript of an informal interview carried out between DG and MGH, informed by reflections from regular meetings throughout their Research Buddy partnership. Through this process, nine lessons were synthesised from their experience: Learn from experience, Tailor the program, Get involved early, Embrace uniqueness, Meet regularly, Build rapport, Ensure mutual benefit, Broad involvement, and Regularly reflect and review. These lessons were corroborated by published literature, and rapport was found to be the most important factor in successful patient involvement. Each of the remaining lessons either stem from and/or contribute to the development of rapport.

Contribution to the literature

To the best of the authors’ knowledge, this is the first perspective piece on patient partnership in a MD–PhD program. This builds upon prior work highlighting the positive impact of partnering medical students with patients to further their clinical education and broaden their perspective, while empowering patients through the opportunity to learn more about their own health condition and health service experience while sharing their experiential insight with future clinicians in a formative stage of their career [ 88 , 89 ]. It builds upon this by demonstrating how MD–PhD students, being situated at the interface between the research and clinical domains, can partner with patients in a fruitful way that has a meaningful impact upon their clinical development while also influencing the design, conduct, and reporting of the research. This was particularly noteworthy during DG’s PhD journey, most of which was undertaken during lockdowns imposed in light of the COVID-19 pandemic. Regular contact with MGH was, for long periods of time, DG’s only patient interaction and therefore was crucial to maintaining patient contact [ 88 ] from a clinical perspective as well as working with MGH to develop solutions to convert various research activities to be entirely online [ 15 , 16 ].

Through regular meetings based on mutual trust and respect, largely comprising open discussion especially when there were no major research progress updates, building rapport was prioritised from the outset of the Research Buddy program. Since MGH and DG had the freedom to define the scope and nature of the program, they were able to emphasise the importance of this reciprocal relationship both through conversation as well as through document review, providing comments alongside DG’s PhD supervisors, which enabled MGH to provide a critical perspective on DG’s work. With strong rapport as the foundation and critical feedback encouraged throughout the research journey, MGH’s role as ‘critical friend’ was characterised and strengthened [ 10 , 17 ].

This perspective piece also builds upon exemplary prior work reporting a Research Buddy program [ 13 ] by being co-authored with the Research Buddy. This perspective piece conveyed lessons learned through a program which drew on elements of embedded consultation [ 5 , 13 ] and demonstrated flexibility in the level of involvement in various aspects of the PhD project in response to changes in MGH’s interests and capacity throughout the partnership [ 16 ].

Furthermore, while the PhD project reflected upon in this perspective piece did not strictly pertain to a digital health innovation nor to a full translational research innovation, a predictive model was developed which was intended for use in the clinical setting for shared clinical decision-making in orthopaedics. Therefore, MGH’s involvement throughout the project was critical for in laying a solid foundation for the development of a clinically relevant digital health innovation [ 90 , 91 ] primed for translation into the clinical setting [ 27 ] in orthopaedics, which is a clinical discipline in which patient involvement is gaining recognition and appreciation [ 26 ].

Implications of findings

The most impactful implication of the findings of this paper is that the description of the context in which the researcher-patient partnership took place, coupled with the co-authored lessons learned and experiential insight [ 3 ] offered through reflection by both members of the Research Buddy partnership, can be utilised by others [ 92 , 93 ]. Learning through experience and reporting these lessons along with a detailed description of the context in which they were learned [ 6 , 18 ] is an impactful outcome of its own [ 92 ]. This enables readers to inform their own involvement efforts, both when establishing involvement programs and refining them.

Through involvement, patients like MGH learn more about their health condition as well as the research that goes into the developments in management approaches and the way in which patients experience the healthcare system [ 85 ].

It is hoped that these findings can be of assistance to ongoing [ 11 , 12 ] and future patient involvement efforts to bring researchers and patients onto the same page from the outset of research projects [ 49 ].

Future directions

Evaluating impact.

The question of how best to evaluate impact of patient involvement is longstanding and complicated [ 48 , 77 ]. There have been many attempts over the years to answer this question [ 11 , 12 , 23 , 73 , 78 , 79 , 94 – 99 ], but it appears there is no single best approach to measuring the effectiveness, success, or impact of involvement [ 100 ], and perhaps such a measure will never exist. However, ongoing efforts to develop and validate consistent patient involvement evaluation measures are encouraged to facilitate the comparison of different involvement strategies and gain some indication of which might be the most promising in a given context, when resources are limited and ought to be allocated to the most promising strategy [ 101 ].

Exploring patient involvement in decision-making non-research patient involvement and empowerment

The research project reflected upon in this perspective piece centred around the development of a risk prediction tool intended to be used in the process of shared clinical decision-making. This perspective piece explored patient involvement in clinically-oriented research being carried out by a MD–PhD candidate, which positions it well for ongoing work exploring the role patients play in the shared clinical decision-making process [ 102 – 104 ], particularly as it pertains to the use of decision aids including predictive tools.

Further reading

Further reading is recommended for those seeking to expand their knowledge of different types of patient involvement in varied contexts in order to better understand how to initiate, or improve, their own patient involvement programs [ 32 , 40 , 105 – 148 ].

Strengths and limitations

Strengths of this perspective piece include the consistent and frequent contact between DG and MGH throughout the course of the PhD program, which facilitated widespread and deep involvement in various aspects of the research project and its constituent studies. This also facilitated continuous feedback and reflection through open discussion, which laid the foundation for the writing of this piece.

One potential limitation is that MGH may be regarded as a ‘professional’ patient partner, given her academic background. This may raise concerns about whether her perspective as a patient is diminished by her familiarity with academia and the research process. This was certainly an important consideration, especially considering MGH’s involvement spanned over 3 years and involved close and regular contact with DG. However, it was not a concern because regardless of how familiar MGH becomes with the research process, she will never lose her perspective as a patient who has lived experience of total joint replacement surgery [ 149 ].

In this perspective piece, a patient and a medical student completing a PhD reflected upon their experience co-designing a Research Buddy partnership within a patient involvement program. To the authors’ knowledge, this is the first time such a partnership has been written about within the context of a MD–PhD program, which is uniquely placed at the interface between the research and clinical domains. A series of nine lessons was identified and presented to inform readers seeking to develop or enhance their own patient involvement programs: learn from experience, tailor the program, get involved early, embrace uniqueness, meet regularly, build rapport, ensure mutual benefit, broad involvement, regularly reflect and review. Researcher-patient rapport is foundational to all other aspects of the patient’s involvement.

Acknowledgements

We acknowledge the work of Dr Tilini Gunatillake and Dr Michelle Lam in establishing the OPUS CCI program. We also acknowledge the work of Dr Elizabeth Nelson, Claire Weeden and Lauren Patten in leading, administering, maintaining, and expanding the program. MMD is supported by a University of Melbourne Dame Kate Campbell Fellowship. PFC holds a National Health & Medical Research Council Practitioner Fellowship (GNT1154203)

Abbreviations

Author contributions.

DG and MGH conceptualised the manuscript and wrote the initial draft, with PFC, MMD, and SB providing intellectual content. All authors contributed to discussions in which the recommendations were synthesised and refined. All authors contributed to revising the manuscript prior to submission, and have all reviewed and approved the final manuscript. All authors agree to be accountable for all aspects of the manuscript and will work together to ensure questions relating to the accuracy and integrity of any part of it are appropriately investigated and resolved. All authors read and approved the final manuscript.

No funding was received directly for this study. DG, MGH, and SB receive no funding. PFC had the following funding sources to declare: Royalties from Johnson and Johnson, Consultancy with Johnson & Johnson, Consultancy with Stryker Corportation (paid personally); Australian National Health & Medical Research Council Practitioner Fellowship (paid to institution), HCF Foundation, BUPA Foundation, St. Vincents Health Australia, Australian Research Council, (Grant support provided to institution for research unrelated to the current manuscript); Axcelda cartilage regeneration project, Patent applied for device, composition of matter and process (institution and personally). MMD had the following funding sources to declare: National Health and Medical Research Council, HCF Foundation, BUPA Foundation, St. Vincents Health Australia, Australian Research Council, (Grant support provided to my institution for research unrelated to the current manuscript).

Availability of data and materials

Declarations.

DG, MGH, and SB have no competing interests. PFC has the following to declare: Chair, Research Committee, Australian Orthopaedic Association (now completed term); Emeritus Board Member Musculoskeletal Australia. MMD has the following to declare: Chair, Australian Orthopaedic Association Research Foundation, Research Advisory Committee.

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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Research Buddy

Research Buddy is an AI-powered tool that generates comprehensive Academic Literature Reviews with Harvard Referencing in minutes. Key features and advantages include:

• Quick and easy : Simply type in a subject or research question, and Research Buddy generates a comprehensive literature review with Harvard referencing in minutes
• Illuminating and comprehensive : In fields with significant academic research, Research Buddy provides a comprehensive review of the literature
• One-page exec summary : Ideal for getting up to date on any subject or issue just before a meeting or class
• Outputs to Word or PDF format : Review can be exported to Word or PDF format for easy sharing and editing

Use cases for Research Buddy involve:

• Conducting academic research in various fields
• Staying up to date on a subject or issue before a meeting or class
• Generating a literature review for a research paper or thesis

Research Buddy was developed by Dixon Humphreys AI capability consultancy partners

Pricing model:

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Research Buddy

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Research Buddy Featured

Research Buddy: The AI-Powered Tool for Quick and Comprehensive Literature Reviews

Research Buddy is a powerful tool that leverages AI technology to generate comprehensive academic literature reviews with Harvard referencing in just a few minutes. Its key features and advantages include:

Quick and Easy: With Research Buddy, all you need to do is type in a subject or research question, and the tool generates a comprehensive literature review with Harvard referencing in just minutes, saving researchers valuable time and effort.

Illuminating and Comprehensive: In fields with significant academic research, Research Buddy provides a comprehensive review of the literature, giving researchers insight and a greater understanding of the subject.

One-Page Executive Summary: Research Buddy generates a one-page executive summary, ideal for getting up to date on any subject or issue just before a meeting or class, ensuring relevant information is always within reach.

Outputs to Word or PDF Format: The literature review generated by Research Buddy can be easily exported to Word or PDF format for easy sharing and editing, ensuring ease of collaboration.

The use cases for Research Buddy include:

Conducting Academic Research in Various Fields: Research Buddy is a valuable tool for anyone conducting academic research in various fields, ensuring the literature review is comprehensive and saves researchers valuable time and effort.

Staying Up-to-Date on a Subject or Issue: Use Research Buddy to stay up-to-date on a subject or issue before a meeting or class, ensuring relevant information is always within reach.

Generating a Literature Review for a Research Paper or Thesis: Research Buddy is a great tool for generating a literature review for a

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Research Buddy

Automated lit review for researchers.

Introducing Research Buddy: The AI-powered Academic Literature Review Generator

Are you tired of spending hours scouring through academic literature to write a comprehensive literature review? Look no further, as Research Buddy is here to help. Developed by Dixon Humphreys AI capability consultancy partners, Research Buddy is an AI-powered tool that generates a comprehensive academic literature review with Harvard referencing in minutes.

Quick and Easy

Gone are the days of spending endless hours researching and compiling literature reviews manually. With Research Buddy, all you need to do is type in a subject or research question, and the tool generates a review for you in a matter of minutes.

Comprehensive and Illuminating

Research Buddy provides comprehensive literature reviews on subjects that have significant academic research, giving you a complete overview of the literature on the subject.

One-Page Executive Summary

Need to get up to speed on a subject quickly? Research Buddy generates a one-page executive summary that is ideal for getting a quick overview before a meeting or class.

Outputs to Word or PDF format

When you are finished, simply export your review to Word or PDF for easy sharing and editing.

• Conduct academic research in various fields
• Stay up to date on a subject or issue before a meeting or class
• Generate literature reviews for research papers or theses

Research Buddy makes writing academic literature reviews quick and effortless, saving you time and effort while still producing a comprehensive output. Say goodbye to manual research and hello to fast and efficient literature reviews with Research Buddy.

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Making Meaning Together: Buddy Reading in a First Grade Classroom

• Published: 26 September 2010
• Volume 38 , pages 289–297, ( 2010 )

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• Tori K. Flint 1 , 2  

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This study uses a Vygotskian approach and a socio-cultural lens, as well as the Transactional Reading Theory to investigate how social interactions and literary transactions can combine through buddy reading to empower young readers and promote literacy in a first grade classroom. The research focuses on how literary transaction and social interaction work together to facilitate emergent and early readers in a ‘partner/buddy’ reading approach. The research question asked whether or not ‘partner/buddy’ reading can promote literacy through social interaction, and yielded three major themes, including the use of reading strategies to scaffold learning, making connections with and to the text in order to construct meaning, and using play as a type of social interaction and motivational method. The findings suggest that buddy reading as a classroom tool can effectively promote literacy and learning in a cooperative setting.

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Bodrova, E., & Leong, D. (1996). Tools of the mind: The Vygotskian approach to early childhood education . Columbus, OH: Merrill/Prentice Hall.

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Christie, J. F., & Roskos, K. A. (2009). Play’s potential in early literacy development. In: R. E. Tremblay, R. G. Barr, R. De V. Peters, M. Boivin (Eds.), Encyclopedia on early childhood development [online]. Montreal, Quebec: Centre of Excellence for Early Childhood Development:1–6. Available at: http://www.child-encyclopedia.com/documents/Christie-RoskosANGxp.pdf . Accessed [April 2010].

Cochran-Smith, M. (1984). The making of a reader . Norwood, NJ: Ablex Publishing.

Cronin, D. (2000). Click, clack, moo: Cows that type . New York, NY: Simon & Schuster.

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Flint, T.K. Making Meaning Together: Buddy Reading in a First Grade Classroom. Early Childhood Educ J 38 , 289–297 (2010). https://doi.org/10.1007/s10643-010-0418-9

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Every New Employee Needs an Onboarding “Buddy”

• Dawn Klinghoffer,
• Candice Young,
• Dave Haspas

Lessons from a pilot program at Microsoft.

Bringing a new employee onboard is both an exciting and stressful time. And while managers play a critical role in shaping a new employees’ first weeks and months, a broader team effort can ensure the experience is both positive and productive. Over the past few years, Microsoft has been working to improve its onboarding process through a pilot program involving “onboarding buddies”: a dedicated current employee assigned to help a new hire’s transition. The company learned that these buddies help ensure a successful onboarding in three key ways: they provide organizational context, boost productivity, and improve new employee satisfaction. Companies that want to start a similar pilot should keep in mind what current employees need to be successful buddies, too. This usually involves prioritizing their workloads, communicating timing, and clarify reporting structures. Ultimately, successful onboarding doesn’t require an overcomplicated playbook. It just takes planful management and the right amount of support.

Bringing a new employee onboard is both an exciting and stressful time. And while managers play a critical role in shaping a new employees’ first weeks and months, a broader team effort can ensure the experience is both positive and productive.

• Dawn Klinghoffer is the head of people analytics at Microsoft.
• CY Candice Young , Ph.D., is a Senior Data Analyst at Microsoft, where she acts as a research advisor to program managers in the areas of onboarding and manager capabilities. She is responsible for developing and implementing research methodologies used to provide evidence-based solutions to improve organizational practices and procedures that impact culture, onboarding, and career development.
• DH Dave Haspas is a Data Analyst at Microsoft, where he works on analytics to support various aspects of the employee lifecycle, generating data-driven insights that inform our program teams on hiring, onboarding, internal movement, and engagement.

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• Open access
• Published: 18 February 2023

Research Buddy partnership in a MD–PhD program: lessons learned

• Daniel J. Gould   ORCID: orcid.org/0000-0002-0423-5822 1 ,
• Marion Glanville-Hearst 1 ,
• Samantha Bunzli   ORCID: orcid.org/0000-0002-5747-9361 2 , 3 ,
• Peter F. M. Choong   ORCID: orcid.org/0000-0002-3522-7374 1 , 4 &
• Michelle M. Dowsey   ORCID: orcid.org/0000-0002-9708-5308 1 , 4  

Research Involvement and Engagement volume  9 , Article number:  4 ( 2023 ) Cite this article

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Background and aims

There is increasing recognition of the importance of patient involvement in research. In recent years, there has also been growing interest in patient partnerships with doctoral studies students. However, it can be difficult to know where to start and how to go about such involvement activities. The purpose of this perspective piece was to share experiential insight of the experience of a patient involvement program such that others can learn from this experience.

This is a co-authored perspective piece centred on the experience of MGH, a patient who has had hip replacement surgery, and DG, a medical student completing a PhD, participating in a Research Buddy partnership over the course of over 3 years. The context in which this partnership took place was also described to facilitate comparison with readers’ own circumstances and contexts. DG and MGH met regularly to discuss, and work together on, various aspects of DG’s PhD research project. Reflexive thematic analysis was conducted on reflections from DG and MGH regarding their experience in the Research Buddy program to synthesise nine lessons which were then corroborated with reference to published literature on patient involvement in research. These lessons were: learn from experience; tailor the program; get involved early; embrace uniqueness; meet regularly; build rapport; ensure mutual benefit; broad involvement; regularly reflect and review.

Conclusions

In this perspective piece, a patient and a medical student completing a PhD reflected upon their experience co-designing a Research Buddy partnership within a patient involvement program. A series of nine lessons was identified and presented to inform readers seeking to develop or enhance their own patient involvement programs. Researcher-patient rapport is foundational to all other aspects of the patient’s involvement.

Plain English summary

The importance of patient involvement in research is gaining recognition. Existing research centres, as well as those that are just getting started, need to find their own way to involve patients and community members. However, learning from the experience of others is crucial to ensure every effort is made to do this in a fruitful way. Therefore, we aimed to share our experience and provide a list of lessons learned to help other researchers and patients get started and work together effectively. Our research centre developed a framework for involving patients in joint replacement research. Part of this framework is a ‘Research Buddy’ program, where a research student partners with a patient so that the research they conduct is more relevant and applicable to the target population. In our case, the research student partnered with someone who had a hip replacement to develop and test a questionnaire for an interview study about artificial intelligence in shared decision-making. The student and patient worked together and wrote this perspective piece outlining nine lessons so readers can learn from their experience of this program. The lessons were: learn from experience, tailor the program, get involved early, embrace uniqueness, meet regularly, build rapport, ensure mutual benefit, broad involvement, regularly reflect and review. People interested in starting, or improving, their own patient involvement activities can learn from our experience. These lessons will need to be adapted to fit the purpose and unique situation of other researchers and patients who have different needs and circumstances.

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Introduction

There is growing recognition of the importance of patient and public involvement and engagement in research [ 1 , 2 ]. However, it can be difficult to know where to begin and how to go about it. Sharing experiential knowledge is critical for different groups seeking to develop and deploy their own programs and strategies [ 3 ]. This is because a one-size-fits-all approach will not address the culture and context of the unique settings in which these programs take place [ 4 , 5 , 6 , 7 ]. Rather, strategies should be tailored to each unique setting [ 8 ]. An in-depth description of the experience of the patient involvement program in a particular context, including the nature of the program and the challenges overcome, provides others with ideas and examples they can modify to suit their own needs [ 1 , 3 , 9 ]. These other groups can read about the experience of others and possibly avoid some pitfalls while harnessing the strengths of the program. This is not intended to restrict creativity nor to provide a prescriptive roadmap, but rather to provide an experiential account of the nature of engagement in a particular setting and offer suggestions for ways in which engagement can take place.

In recent years, there has also been growing interest in efforts to involve patients in doctoral studies [ 5 , 10 , 11 , 12 , 13 , 14 , 15 , 16 , 17 ]. This presents a unique opportunity to instil recognition of the importance of patient involvement early in the career of researchers and equip them with the skills and experience to facilitate meaningful involvement. It simultaneously offers patients an opportunity to partner with researchers in this formative stage of their career as they develop their research interests and approach to research.

Aims and rationale

The aim of this perspective piece was for the first two members (DG and MGH) of a Research Buddy partnership (described below in the ‘Context’ section) to critically reflect on their experience of this involvement activity throughout the course of a MD–PhD program.

Through this reflective process, lessons learned through experience were consolidated such that they can be of benefit to others seeking to learn from this experiential insight as they establish or improve their own patient involvement programs [ 1 , 3 , 18 , 19 , 20 ]. We also provided a detailed description of the context in which this Research Buddy partnership took place, to provide readers with a more complete understanding of the way in which this context influenced the partnership such that readers can consider the nature of their own unique situation and how this might impact upon patient involvement efforts [ 21 ].

Overview of structure of this perspective piece

Definitions.

Theoretical Underpinnings.

Method of Patient Involvement throughout MD–PhD program

Method of reflection in this perspective piece

Findings—Lessons Learned.

Definitions

The body of literature in the patient involvement space is fraught with complex and nuanced terminology [ 22 ]. Therefore, the purpose of this section is to clarify the terminology and definitions used. Influential stakeholder involvement literature, as well as recent publications, were reviewed to select widely-used and functionally relevant terminology for this perspective piece [ 1 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 ]. The other critical aspect of the rationale for selecting these terms and definitions was that they were agreed upon with the patient partner, MGH, as they accurately described the nature of her involvement.

Terms used in this paper include the following: patient, involvement, partnership, and co-design.

The term ‘patient’ was used because this perspective piece concerns involvement with patients as distinct from members of the public. While this term may invoke the image of an individual seeking care, in the context of involvement it also refers to individuals with experience of a health condition and its management [ 28 ], which in this case is total joint replacement surgery.

Building upon this is the definition of ‘involvement’, which is commonly accepted to refer to research done ‘with’ or ‘by’ patients rather than ‘for’, ‘to’, or ‘about’ them [ 30 ]. One specific type of involvement is the ‘patient partnership’, in which patients are embedded in various research activities at different levels and in multiple stages of the research process [ 1 ]. A particularly powerful example of a patient partnership is the Research Buddy program, which has been described previously as a program in which a doctoral student works closely with a patient throughout their project [ 13 ] and which was also described and reflected upon later in this perspective piece in the section ‘Method of Patient Involvement throughout MD–PhD program’.

Finally, the term ‘co-design’ was used in this piece to describe the active, voluntary process of researcher and patient partner working together on the design of a PhD project and its constituent studies, as this terminology is appropriate for the timeframe in which doctoral studies typically take place [ 22 , 32 , 33 , 34 , 35 ].

Theoretical underpinnings

Theory development was not an aim of this perspective piece. However, it is important to describe the theoretical underpinnings of the patient involvement program.

There are three main approaches to patient involvement in research: epistemological, consequentialist, and emancipatory or moral [ 33 , 36 , 37 ]. The epistemological approach recognises the fact that patients have lived experience of a health condition that can be of benefit to the research by broadening the perspective of researchers. The emancipatory approach recognises that patients have a right to be involved in publicly funded research that impacts upon them or the care they receive, and consequently researchers have a responsibility to involve patients. Finally, the consequentialist argument states that involvement can improve the design, conduct, and reporting of research.

Primarily, the emancipatory argument motivated the formation of the involvement program described in this perspective piece. Furthermore, patient involvement can lead to more ethically sound research [ 38 ], and this was recognised in the work reflected upon in this piece as MGH assisted DG in the ethics application process for the PhD research projects through document review. However, it was also recognised that the quality and relevance of research conducted at the research centre could be improved through involvement of a patient with lived experience of joint replacement surgery. Therefore, the consequentialist and epistemological arguments also underpinned the involvement program.

Recent literature has also advocated for a pragmatic approach to patient-oriented research by utilising patient involvement to ultimately improve health outcomes for affected individuals [ 39 ]. These authors recognised that achieving such impact is a complex task and, as such, mixed methods approaches to research are encouraged to harness the strength of both quantitative and qualitative research methodologies. This is particularly relevant to the current perspective piece, which describes patient involvement in a mixed methods PhD project on a topic of clinical relevance aimed to improve outcomes for patients.

Finally, the word ‘perspective’ was intentionally selected instead of the term ‘representative’ because it is unrealistic and unfair to ask a single patient with their own unique experience to generalise their experience to represent that of all patients with the same health condition. Rather, patient involvement was incorporated to broaden the perspective of the researchers while they co-designed research with the patient [ 36 , 40 ].

A detailed description of the context in which the patient involvement program took place facilitates comparison to one’s own context such that the potential applicability of a framework and experience can be considered in detail [ 6 , 7 ]. This is not intended to limit the generalisability of the findings reflected upon in this perspective piece. Rather, the specific context in which the patient involvement partnership and activities took place is described in detail such that readers can accurately compare this context to their own.

The patient involvement program described in this perspective piece took place in an Australian National Health and Medical Research Council Centre for Research Excellence for Total Joint Replacement, seeking to O ptimise P atient o U tcomes and S election for Total Joint Replacement (OPUS). OPUS is embedded in a hospital in Melbourne, Victoria, which is a tertiary referral centre for total joint replacement (TJR), providing care for people from a broad range of geographical regions, socioeconomic backgrounds, and cultures [ 41 ]. OPUS brings together clinician-researchers with backgrounds in orthopaedic surgery, nursing, and physiotherapy, as well as trialists, epidemiologists, health economists, statisticians and qualitative researchers. It comprises researchers at various stages of their careers, including graduate research students.

The patient involvement program at OPUS was developed and launched in 2020 and has been described previously [ 42 ]. The program involves a four-tiered framework of involvement (see Fig.  1 ). Table 3 of this prior publication also outlines the remuneration fee schedule according to which MGH was remunerated for her time. This prior publication used the term ‘consumer’, therefore, for consistency, this terminology is used below when describing the framework.

Proposed level of involvement for consumers and community members presents different opportunities of participation and the relevant benefits to researchers

This Figure was made available under the Creative Commons Attribution 4.0 ( http://creativecommons.org/licenses/by/4.0/ ).

The Consumer and Community Advisory Group (bottom of Fig.  1 ) oversees the operations of the CCI program. It is chaired by a consumer (MGH, co-author on this paper).

This perspective piece details the experience of a Research Buddy, Tier 3 as shown in Fig.  1 , and an MD–PhD candidate at OPUS. An MD–PhD candidate is a medical student who takes time out from their clinical studies to complete a PhD. The details of this Research Buddy program are described in the next section.

Method of patient involvement throughout MD–PhD program

The Research Buddy program reflected upon in this piece took the approach of broadening the perspective of the research team by including the voice a patient with lived experience of a health condition [ 43 ]. This is distinct from an approach which would seek to achieve representativeness from one patient partner on behalf of all patients with a shared lived experience, which would be unrealistic [ 31 , 44 ].

The focus of this piece is on the Research Buddy partnership comprising authors DG and MGH. In this section, DG and MGH reflected upon their expectations prior to the commencement of the Research Buddy program and how their actual experience played out.

DG was a final-year postgraduate medical student in 2019, carrying out a research project on risk factors for readmission following total knee replacement (TKR) surgery. The opportunity arose to enrol in a PhD to expand upon this work, which led to the deferment of DG’s final year of medical school in order to complete a PhD as part of an MD–PhD program [ 45 ]. Building upon the research into risk factors for readmission following TKR, the PhD centred around the development of a clinical risk prediction tool utilising machine learning. DG, along with his PhD supervisors (authors MD, SB, and PC) felt that the strong clinical focus of the MD–PhD program would position it well for close involvement with a Research Buddy. MGH had previously participated, as a subject, in a study conducted by MD and PC investigating the impact of a mindfulness program on recovery post-surgery for patients undergoing total hip replacement (THR) [ 46 ]. MGH reached out to MD regarding the findings of the mindfulness study, coincidentally while MD was establishing the patient involvement framework at OPUS and seeking volunteers for the Research Buddy role. MGH subsequently embraced the opportunity and volunteered to be DG’s Research Buddy approximately 6 months after the official commencement of the PhD. MGH decided to take part specifically in DG’s project because she wanted to learn more about research, had a keen interest in artificial intelligence and machine learning and its application to lower limb joint replacement surgery, and has had a lifelong interest and involvement in academia. This presented a tangible opportunity to make a substantial impact on the direction of the research and cement its clinical, stakeholder-focused approach, and MGH felt her interests and experience aligned most closely with DG’s project [ 47 ].

During this formative stage of the PhD project, MGH and DG worked together to define the scope and structure of the Research Buddy program. There was a shared expectation of open-ended discussions and regular contact with updates on the research. Neither DG nor MGH had been involved in such a patient involvement partnership before, therefore they did not have rigid expectations about the manner in which the partnership would unfold. It was decided that regular monthly meetings would facilitate the development of rapport, ongoing discussion of ideas for the PhD project and opportunities for involvement its constituent studies, and the opportunity for regular updates on progress.

The first part of DG’s PhD project discussed in these meetings was the systematic review, which was in the manuscript drafting stage and benefited greatly from MGH’s input on the clarity of the language [ 48 , 49 ] and ensuring the pertinence and importance of the topic were clearly communicated. Patient involvement in systematic reviews has been reported extensively in the literature [ 32 , 50 , 51 , 52 ], and it was an opportunity for MGH to gain familiarity with the topic at the foundation of the PhD project. More broadly, the regular monthly meetings were critical in defining the overall scope and purpose of the PhD project. Specifically, during the early stages it was difficult to determine how to make the research more clinically relevant. MGH had a background in occupational therapy and medical anthropology and had previously been involved in qualitative interview projects in which she interviewed participants and coded transcripts. The idea of a qualitative study exploring the views of TKR patients on the use of artificial intelligence and machine learning for risk prediction in shared clinical decision-making was already being developed, and MGH felt this was a fitting opportunity to be involved given her personal journey as a patient and her prior academic and research experience. MGH was involved as a co-author on the qualitative study and made a substantial contribution by pilot-testing the interview guide, contributing to the reflexive thematic analysis, and preparing and editing the manuscript for publication.

Next, MGH reviewed all of the ethics approval application documents for the studies comprising DG’s PhD project. Not only did this improve the clarity of the documents in a similar way to MGH’s review of the systematic review manuscript, but it also led to the development of more ethically conscious research by incorporating a patient’s perspective into the application [ 38 ] and helped DG to clarify the way these studies related to one another and formed a cohesive program of research.

Beyond the specific elements in which MGH made a direct contribution, DG’s reflection upon the stakeholder involvement in the form of the Research Buddy program prompted a shift in focus from machine learning to enhance predictive performance of the TKR readmission prediction model, to stakeholder involvement and engagement in the whole process of developing clinical risk prediction models, including not only patients but also clinicians [ 29 , 53 ]. In light of this, thanks to MGH’s Research Buddy input, DG designed the PhD project with stakeholder involvement embedded throughout.

At the time of writing this perspective piece, the main studies of the PhD project had been completed and DG was in the final stages of thesis write-up following feedback provided by MGH on the first full draft. The overall focus of the PhD project is on co-design with stakeholders, inspired by the Research Buddy partnership with MGH and cemented by exploration of the literature [ 24 , 54 , 55 , 56 ].

The PhD project centres around the development of a machine learning model to predict 30-day readmission [ 57 ] in people undergoing TKA surgery years [ 58 , 59 ] for osteoarthritis (OA) [ 60 ], co-designed with clinicians and patients [ 61 ]. The project is divided into four components, each comprising at least one main study. While MGH’s involvement in the project overall has been outlined above, what follows is a brief description of each part of the PhD project as well as the level [ 29 ] and phase [ 62 ] at which MGH was involved. While a high level of involvement was aimed at from the early phases of each part of the PhD project, it is recognised that higher levels of involvement are not automatically more desirable [ 27 ] and, since some aspects of the project were already underway when MGH and DG commenced the Research Buddy program, flexibility and responsiveness to the realities of the circumstances were of utmost importance in deciding with MGH at what level she wanted to be involved.

Identify and appraise risk factors for 30-day readmission following TKA.

As previously mentioned, MGH was involved in reviewing the final draft of the systematic review manuscript [ 63 ] and provided feedback on the clarity of the language. The next stage of this part of the project involved a modified Delphi and focus group study involving clinicians who care for TKR patients to gain their insight on the clinical relevance of risk factors identified in the systematic review and meta-analysis, as well as giving them the opportunity to suggest novel risk factors which had not been identified in prior literature. MGH helped by observing the pilot test of the focus group and providing feedback on its structure and conduct. This study has also been published [ 64 ].

Level = Involve

Phase = Design and preparation, dissemination

Develop and internally validate the model.

The findings of the systematic review and meta-analysis, as well as the Delphi and focus group study, were utilised alongside machine learning to develop a clinically applicable risk prediction tool for 30-day readmission following TKR which harnessed both clinical reasoning and statistical learning techniques. The manuscript is currently under review in an academic journal. MGH and DG discussed the project in their regular meetings as DG designed the study, particularly the purpose of the predictive tool and the way in which it could be used in the live clinical setting to facilitate shared clinical decision-making between patient and surgeon. and MGH reviewed several drafts of the manuscript ahead of submission for publication.

Phase = Dissemination

Explore the understanding of AI for risk prediction in shared clinical decision-making among people with TKA.

This is the qualitative semi-structured interview study, involving interviews with 20 total knee replacement patients, in which MGH had the most direct involvement, being included as a co-author. Patient and stakeholder involvement in qualitative studies is a longstanding practice [ 5 , 7 , 65 , 66 , 67 , 68 , 69 ]. MGH was involved in refining the research question and interview guideline through two rounds of pilot-testing. MGH was also actively involved in the reflexive thematic analysis and in drafting the manuscript for submission to an academic journal, where it is currently under review.

Level = Collaborate

Phase = Design and preparation, conduct and implementation, and dissemination

Compare the performance of the predictive model to that of clinicians involved in the care of people receiving TKA surgery.

Preliminary findings for this study have been analysed and recruitment is almost complete at the time of writing this perspective piece. MGH was involved in a similar way to the predictive model development study, however this comparison study involved recruiting clinicians to participate in a survey. MGH reviewed recruitment material and discussed with DG how to structure the online survey to ensure the instructions were clear and straightforward and the length of the survey was manageable for busy clinicians.

Rather than speaking for the patient, it is important for the patient to speak for themselves. Prior reflective work on patient involvement in doctoral research adopted this approach to great effect [ 5 , 14 ]. This piece was therefore co-written by MGH and DG, the two members of the inaugural Research Buddy partnership at OPUS.

Pertinent elements of the GRIPP2 (Guidance for Reporting Involvement of Patients and the Public) checklist [ 70 ] were adhered to while writing this piece.

The experiential insight gained by DG and MGH through their involvement in the Research Buddy program was consolidated in regular meetings throughout DG’s PhD project. Additionally, DG and MGH conducted an informal interview using questions informed by prior literature in which patient advocates from various patient involvement programs in the UK were interviewed [ 9 ]. This interview was audio recorded and transcribed. The transcript was then analysed using reflective thematic analysis [ 71 ] in which themes were generated inductively by DG and MGH based on MGH’s responses to the questions in the interview, informed by their shared experience in the Research Buddy partnership. These themes were then synthesised and refined into lessons, inspired by prior patient involvement literature which has used thematic analysis in a similar way to generate lessons and recommendations [ 1 , 3 , 55 , 62 , 72 , 73 ].

A literature search was then carried out to identify literature reviews which contained lessons from, or recommendations for, patient involvement [ 1 , 5 , 13 , 15 , 28 , 35 , 62 , 74 , 75 ]. These reviews were used to corroborate the findings from our own inductive analysis and reflection.

DG and MGH derived these lessons by reflecting primarily on their experience in the Research Buddy program. However, MGH was embedded in various other patient involvement activities at the research centre (OPUS), therefore some of these lessons will be broadly applicable beyond Research Buddy partnerships. This will depend on the patient’s desired level of involvement, and it is advised that readers are flexible in their interpretation and implementation of these findings.

Findings: lessons learned

Lesson (1) learn from experience.

Don’t go in completely blind. Learn from the experience of others as much as possible. Bring in experienced patient partners, and researchers experienced in patient involvement, who can offer advice on promising avenues to explore as well as flagging those which are less likely to be fruitful. For example, as part of the Research Buddy program reflected upon in this perspective piece, Carol Vleeskens was consulted to conduct a training session attended by both MGH and DG. Carol was a co-author on the publication outline OPUS’ patient involvement framework [ 42 ] and has extensive experience in patient involvement [ 76 ]. MGH was then involved in preparing an orientation day for prospective patient partners at OPUS, which she also attended.

Another powerful resource is published work on the experience and appraisal of other researcher-patient partnerships sharing their experience [ 5 ].

This lesson is pertinent to consider both in preparation for partnering with patients in order to maximise the likelihood of success prior to launching involvement programs [ 8 , 13 , 48 , 77 ], as well as for ongoing appraisal and improvement of existing programs based on patient partner feedback [ 1 ].

Lesson (2) tailor the program

A one-size-fits-all approach does not work. Patient involvement programs should be bespoke. They should be tailored to the unique context of the research centre engaging the patients [ 5 , 78 ]. Learning from the work of others is critical for generating ideas about how one’s own program could take shape [ 78 ], but it is equally important to modify these programs so they are fit for purpose.

Tailoring the patient involvement program has been emphasised in prior literature as a critical component of fruitful involvement through the translation of general principles into context-specific systems and actions [ 4 , 5 , 8 , 15 , 35 , 74 ].

Lesson (3) get involved early

If possible, involve patients in discussions where ideas are generated for research projects. Allow ample time to include patients on ethics applications and governance approvals to ensure they can make a meaningful contribution to the research.

Integrating patient involvement in earlier stages of research helps to facilitate truly patient-led research. Based on the experience outlined in this perspective piece, there are two main ways in which this can be done. First, patient involvement can be embedded in the ongoing work of established research centres as well as the commencement of work at new research centres in order to identify research priorities and steer the direction of research activities [ 4 , 7 ]. Second, in the style of Research Buddy partnerships, patients can be partnered with PhD students in order to co-design the program of research in a meaningful way by embedding engagement and co-design at the beginning of the student’s project [ 19 ]. It is not difficult to imagine a pipeline in which researchers collaborate with patients to generate ideas and then these ideas are translated into PhD research projects with patients.

Having patients engaged at these different stages of idea-generation and research project design could have the added benefit of anticipating and addressing challenges likely to arise in complex research projects such that solutions can be suggested proactively [ 29 ].

Early involvement has been demonstrated or recommended numerous times in a diverse range of contexts and for different levels of involvement [ 5 , 7 , 15 , 28 , 35 , 43 , 75 ].

Lesson (4) embrace uniqueness

Patients bring a wealth of unique experience. They should be treated as individuals with their own unique characteristics, experience, and insight [ 79 ]. Embrace their unique skills and experience. Throughout regular meetings and correspondence, various aspects of the patient’s experience may enable them to bring a unique perspective to the research which researchers could not have anticipated.

Embracing uniqueness of patient partners has been found to encourage more inclusive stakeholder involvement by demonstrating a flexibility in the researchers and responsiveness to the individual needs, experiences, and preferences of people seeking to be involved [ 1 , 5 , 35 , 48 , 77 ].

Lesson (5) meet regularly

Meet regularly, right from the start, even in the absence of a clear idea of what to do in terms of exactly how the patient will be involved. The level and nature of involvement can be collaboratively defined through these regular meetings.

Be open to a variety of forms the patient’s involvement could take and be willing to engage in some trial and error. Some ideas will not pan out, and that is just part of the process. Be willing to persevere and adapt. For example, during the qualitative study conducted as part of DG’s PhD project, MGH attempted cross-coding of the qualitative interview transcripts using the coding framework being developed by DG and author SB. However, MGH found that her style of coding based her prior experience was not functioning as well as it had for previous projects. DG and MGH attempted different styles and continued to discuss their findings in their regular monthly meetings, however ultimately this cross-coding exercise was abandoned as it was becoming quite convoluted and MGH felt more comfortable discussing the transcripts and contributing to the discussions around the development of themes through reflexive thematic analysis.

Both DG and MGH had an openness that resulted in these meetings being fruitful beyond the pragmatic aspects of setting the research agenda and tracking progress; they were critical in building rapport. Even when there were no specific research updates, the regular meeting time was maintained and utilised for an opportunity to discuss topics related to the research.

Regular meetings are a critical component of impactful patient involvement programs reported in the literature [ 15 , 35 , 62 , 75 ] as they facilitates ongoing communication, continuous feedback, and strong rapport-building as expanded upon in Lesson 6.

Lesson (6) build rapport

Establishing trust and rapport is critical to the success of the program. Put in the time. Create an environment in which frank and open discussions are encouraged. Follow through on action items from meetings and email discussions. Respect the patient’s autonomy while supporting them in their role. Listen to the patient and take their feedback into account. Demonstrate to the patient how their input is influencing the research. This designated time to meet and talk openly was critical for building rapport, which is arguably the most important component of patient involvement to increase the likelihood of success [ 37 , 80 ]. The centrality of rapport to the overall success of patient involvement in research is reflected in the large volume of diverse literature recognising its importance [ 1 , 5 , 17 , 28 , 30 , 35 , 62 , 73 , 75 , 81 , 82 , 83 , 84 ].

Lesson (7) ensure mutual benefit

Patients are more engaged when there is something in it for them. Ensure the interaction is mutually beneficial. For example, patients might learn more about their condition, or the condition of those they care for, through the patient involvement program [ 85 ].

This pragmatic aspect of involvement has been recognised in the literature detailing meaningful and impactful involvement activities that recognise the importance of ensuring the involvement benefits the research, the researchers, and the patient partners themselves [ 1 , 19 , 35 , 62 , 75 , 83 ].

The nature of a successful patient involvement program, in which there is rapport, mutual respect, and open discussion, is associated with a certain degree of passive learning simply by the two parties being in contact with one another [ 85 ]. Without any specific educational component to the program, regular and open communication regarding a common focus in the context of a research centre or program can have the effect of educating the patient about research [ 53 ], and the researcher about the patient’s lived experience of their condition [ 72 , 86 ]. Patients may also learn more about their own condition, its management, and current research being done to further understanding about it [ 85 ].

Lesson (8) broad involvement

It is beneficial to have the patient embedded in the broader patient involvement activities at the research centre, not just the Research Buddy (or equivalent) program. This may enable the patient to participate in broad discussions about current research and setting the direction of future research.

This is important for contextualising the Research Buddy’s work and enhancing their understanding of the way in which it fits into the broader body of work being conducted at the research centre in which the program is taking place. This is not to say patient partners should be stretched beyond their limit, but rather that they are not forced to limit themselves to one project and instead are encouraged to broaden their perspective through opportunities to be involved in varying capacities in other research projects and activities depending on their interests and capacity [ 28 , 35 , 82 ].

Lesson (9) regularly reflect and review

It is not enough to have good intentions. Having a framework is also critical, but the patient’s role may evolve over time and ethical considerations related to their involvement also evolve. It is easy for the patient’s role to devolve into tokenism despite the best intentions [ 22 ]. Regular meetings incorporating feedback from patient partners on their involvement in the research are critical to ensuring the patient’s role as partner in the research is respected and maintained. This requires transparency on the part of the researcher regarding how the patient’s involvement is influencing the research. Researchers must also be open to feedback from patients that may indicate they are not satisfied with their involvement and adjustments to their involvement may be required.

One potential way in which the patient partnership can break down is for researchers to treat them less like partners in the research process and more like participants in quasi-qualitative research by simply calling upon patients to complete surveys or answer questions as if in a qualitative interview. This is problematic because patient involvement in research is distinct from qualitative research and must be treated as such, but vigilance and effort is required to maintain the boundaries between the two [ 22 ].

Beyond this specific problem, regular reflection and review are broadly applicable to every aspect of patient involvement to ensure the patient’s involvement is meeting expectations as these expectations evolve throughout the research project alongside changes in the patient’s capacity and interests.

Regular review is crucial to ensure ethical principles are being adhered to at all times as the patient’s role evolves. Circumstances change, both intentionally and unintentionally, so it is critical to have discussions specifically dedicated to reviewing the patient’s role and ensuring they are still meaningfully involved and ethical principles are adhered to [ 87 ]. There may be occasions on which the patient’s preconceived ideas need to be discussed and worked through.

Building upon the other lessons outlined in this perspective piece, rapport based on mutual respect, coupled with regular meetings, provide the structure and nurture the culture necessary to facilitate continuous feedback as well as regular designated touch points at which reflection and review can take place [ 5 , 13 , 28 , 35 , 62 , 74 , 75 , 83 , 87 ].

Summary of findings

In this perspective piece, a patient partner with lived experience of total joint replacement surgery (MGH) and a MD–PhD candidate (DG) reflected on their experience in a Research Buddy program throughout a PhD project. Their aim was to provide experiential insight such that other researchers and patient partners can learn from their experience as they develop and refine their own patient involvement programs. Inductive thematic analysis was applied to the transcript of an informal interview carried out between DG and MGH, informed by reflections from regular meetings throughout their Research Buddy partnership. Through this process, nine lessons were synthesised from their experience: Learn from experience, Tailor the program, Get involved early, Embrace uniqueness, Meet regularly, Build rapport, Ensure mutual benefit, Broad involvement, and Regularly reflect and review. These lessons were corroborated by published literature, and rapport was found to be the most important factor in successful patient involvement. Each of the remaining lessons either stem from and/or contribute to the development of rapport.

Contribution to the literature

To the best of the authors’ knowledge, this is the first perspective piece on patient partnership in a MD–PhD program. This builds upon prior work highlighting the positive impact of partnering medical students with patients to further their clinical education and broaden their perspective, while empowering patients through the opportunity to learn more about their own health condition and health service experience while sharing their experiential insight with future clinicians in a formative stage of their career [ 88 , 89 ]. It builds upon this by demonstrating how MD–PhD students, being situated at the interface between the research and clinical domains, can partner with patients in a fruitful way that has a meaningful impact upon their clinical development while also influencing the design, conduct, and reporting of the research. This was particularly noteworthy during DG’s PhD journey, most of which was undertaken during lockdowns imposed in light of the COVID-19 pandemic. Regular contact with MGH was, for long periods of time, DG’s only patient interaction and therefore was crucial to maintaining patient contact [ 88 ] from a clinical perspective as well as working with MGH to develop solutions to convert various research activities to be entirely online [ 15 , 16 ].

Through regular meetings based on mutual trust and respect, largely comprising open discussion especially when there were no major research progress updates, building rapport was prioritised from the outset of the Research Buddy program. Since MGH and DG had the freedom to define the scope and nature of the program, they were able to emphasise the importance of this reciprocal relationship both through conversation as well as through document review, providing comments alongside DG’s PhD supervisors, which enabled MGH to provide a critical perspective on DG’s work. With strong rapport as the foundation and critical feedback encouraged throughout the research journey, MGH’s role as ‘critical friend’ was characterised and strengthened [ 10 , 17 ].

This perspective piece also builds upon exemplary prior work reporting a Research Buddy program [ 13 ] by being co-authored with the Research Buddy. This perspective piece conveyed lessons learned through a program which drew on elements of embedded consultation [ 5 , 13 ] and demonstrated flexibility in the level of involvement in various aspects of the PhD project in response to changes in MGH’s interests and capacity throughout the partnership [ 16 ].

Furthermore, while the PhD project reflected upon in this perspective piece did not strictly pertain to a digital health innovation nor to a full translational research innovation, a predictive model was developed which was intended for use in the clinical setting for shared clinical decision-making in orthopaedics. Therefore, MGH’s involvement throughout the project was critical for in laying a solid foundation for the development of a clinically relevant digital health innovation [ 90 , 91 ] primed for translation into the clinical setting [ 27 ] in orthopaedics, which is a clinical discipline in which patient involvement is gaining recognition and appreciation [ 26 ].

Implications of findings

The most impactful implication of the findings of this paper is that the description of the context in which the researcher-patient partnership took place, coupled with the co-authored lessons learned and experiential insight [ 3 ] offered through reflection by both members of the Research Buddy partnership, can be utilised by others [ 92 , 93 ]. Learning through experience and reporting these lessons along with a detailed description of the context in which they were learned [ 6 , 18 ] is an impactful outcome of its own [ 92 ]. This enables readers to inform their own involvement efforts, both when establishing involvement programs and refining them.

Through involvement, patients like MGH learn more about their health condition as well as the research that goes into the developments in management approaches and the way in which patients experience the healthcare system [ 85 ].

It is hoped that these findings can be of assistance to ongoing [ 11 , 12 ] and future patient involvement efforts to bring researchers and patients onto the same page from the outset of research projects [ 49 ].

Future directions

Evaluating impact.

The question of how best to evaluate impact of patient involvement is longstanding and complicated [ 48 , 77 ]. There have been many attempts over the years to answer this question [ 11 , 12 , 23 , 73 , 78 , 79 , 94 , 95 , 96 , 97 , 98 , 99 ], but it appears there is no single best approach to measuring the effectiveness, success, or impact of involvement [ 100 ], and perhaps such a measure will never exist. However, ongoing efforts to develop and validate consistent patient involvement evaluation measures are encouraged to facilitate the comparison of different involvement strategies and gain some indication of which might be the most promising in a given context, when resources are limited and ought to be allocated to the most promising strategy [ 101 ].

Exploring patient involvement in decision-making non-research patient involvement and empowerment

The research project reflected upon in this perspective piece centred around the development of a risk prediction tool intended to be used in the process of shared clinical decision-making. This perspective piece explored patient involvement in clinically-oriented research being carried out by a MD–PhD candidate, which positions it well for ongoing work exploring the role patients play in the shared clinical decision-making process [ 102 , 103 , 104 ], particularly as it pertains to the use of decision aids including predictive tools.

Further reading

Further reading is recommended for those seeking to expand their knowledge of different types of patient involvement in varied contexts in order to better understand how to initiate, or improve, their own patient involvement programs [ 32 , 40 , 105 , 106 , 107 , 108 , 109 , 110 , 111 , 112 , 113 , 114 , 115 , 116 , 117 , 118 , 119 , 120 , 121 , 122 , 123 , 124 , 125 , 126 , 127 , 128 , 129 , 130 , 131 , 132 , 133 , 134 , 135 , 136 , 137 , 138 , 139 , 140 , 141 , 142 , 143 , 144 , 145 , 146 , 147 , 148 ].

Strengths and limitations

Strengths of this perspective piece include the consistent and frequent contact between DG and MGH throughout the course of the PhD program, which facilitated widespread and deep involvement in various aspects of the research project and its constituent studies. This also facilitated continuous feedback and reflection through open discussion, which laid the foundation for the writing of this piece.

One potential limitation is that MGH may be regarded as a ‘professional’ patient partner, given her academic background. This may raise concerns about whether her perspective as a patient is diminished by her familiarity with academia and the research process. This was certainly an important consideration, especially considering MGH’s involvement spanned over 3 years and involved close and regular contact with DG. However, it was not a concern because regardless of how familiar MGH becomes with the research process, she will never lose her perspective as a patient who has lived experience of total joint replacement surgery [ 149 ].

In this perspective piece, a patient and a medical student completing a PhD reflected upon their experience co-designing a Research Buddy partnership within a patient involvement program. To the authors’ knowledge, this is the first time such a partnership has been written about within the context of a MD–PhD program, which is uniquely placed at the interface between the research and clinical domains. A series of nine lessons was identified and presented to inform readers seeking to develop or enhance their own patient involvement programs: learn from experience, tailor the program, get involved early, embrace uniqueness, meet regularly, build rapport, ensure mutual benefit, broad involvement, regularly reflect and review. Researcher-patient rapport is foundational to all other aspects of the patient’s involvement.

Availability of data and materials

Not applicable.

Abbreviations

Doctor of philosophy

Doctor of medicine

Guidance for reporting Involvement of Patients and the Public

OPtimise Patient oUtcomes and Selection for Total Joint Replacement

Total knee replacement

Total hip replacement

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Acknowledgements

We acknowledge the work of Dr Tilini Gunatillake and Dr Michelle Lam in establishing the OPUS CCI program. We also acknowledge the work of Dr Elizabeth Nelson, Claire Weeden and Lauren Patten in leading, administering, maintaining, and expanding the program. MMD is supported by a University of Melbourne Dame Kate Campbell Fellowship. PFC holds a National Health & Medical Research Council Practitioner Fellowship (GNT1154203)

No funding was received directly for this study. DG, MGH, and SB receive no funding. PFC had the following funding sources to declare: Royalties from Johnson and Johnson, Consultancy with Johnson & Johnson, Consultancy with Stryker Corportation (paid personally); Australian National Health & Medical Research Council Practitioner Fellowship (paid to institution), HCF Foundation, BUPA Foundation, St. Vincents Health Australia, Australian Research Council, (Grant support provided to institution for research unrelated to the current manuscript); Axcelda cartilage regeneration project, Patent applied for device, composition of matter and process (institution and personally). MMD had the following funding sources to declare: National Health and Medical Research Council, HCF Foundation, BUPA Foundation, St. Vincents Health Australia, Australian Research Council, (Grant support provided to my institution for research unrelated to the current manuscript).

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Daniel J. Gould, Marion Glanville-Hearst, Peter F. M. Choong & Michelle M. Dowsey

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Samantha Bunzli

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DG and MGH conceptualised the manuscript and wrote the initial draft, with PFC, MMD, and SB providing intellectual content. All authors contributed to discussions in which the recommendations were synthesised and refined. All authors contributed to revising the manuscript prior to submission, and have all reviewed and approved the final manuscript. All authors agree to be accountable for all aspects of the manuscript and will work together to ensure questions relating to the accuracy and integrity of any part of it are appropriately investigated and resolved. All authors read and approved the final manuscript.

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DG, MGH, and SB have no competing interests. PFC has the following to declare: Chair, Research Committee, Australian Orthopaedic Association (now completed term); Emeritus Board Member Musculoskeletal Australia. MMD has the following to declare: Chair, Australian Orthopaedic Association Research Foundation, Research Advisory Committee.

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Gould, D.J., Glanville-Hearst, M., Bunzli, S. et al. Research Buddy partnership in a MD–PhD program: lessons learned. Res Involv Engagem 9 , 4 (2023). https://doi.org/10.1186/s40900-023-00414-9

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Using Paired Reading to Increase Fluency and Peer Cooperation

About this Strategy Guide

In this strategy, students read aloud to each other, pairing more fluent readers with less fluent readers.  Likewise, this strategy can be used to pair older students with younger students to create “reading buddies.”  Additionally, children who read at the same level can be paired to reread a text that they have already read, for continued understanding and fluency work.  This research-based strategy can be used with any book or text in a variety of content areas, and can be implemented in a variety of ways.

Research Basis

Strategy in practice, related resources.

In order to increase student fluency, readers need experience reading to and listening to other readers of all kinds.  Specifically, lower-level readers benefit from strategies such as Paired Reading by listening to the reading of a higher-level reader.  Reading with someone else encourages students to try reading material that may be above their usual reading level, while also building oral skills so that students are more comfortable with their reading. Additionally, this strategy allows the teacher to observe readers in the classroom and work with students who may need more assistance.

Paired Reading (also called Partner Reading) can be used in a variety of circumstances and with a variety of content.  This strategy encourages students to work together and supports peer-assisted learning and cooperation through reading, listening, and responding to other readers.

Pairing Students & The Roles of Students

Students can be paired in different ways - either by same reading ability or by more emerging readers with higher-level readers.  Additionally, younger students can be paired with older students from an upper grade. Use the following steps to pair lower-level (or younger) readers with higher-level (or older) readers.

• After assessing students' reading abilities, list the students in order from highest to lowest according to reading ability.
• Divide the list in half.
• Place the student in the top slot of the first list with the student in the top slot of the second list; continue until all students have been assigned a partner.
• Adjust partners as necessary, being sensitive of students with special needs.
• Allow some time for students to chat with their new partners; considering presenting them with some "getting to know you" questions to ask and answer with each other.
• Choose any book or text (fiction or nonfiction), where students will take turns reading by sentence, paragraph, page or chapter.
• If the students will be reading individually (rather than at the same time), the reader from the first list should read first while the reader from the second list listens and follows along.
• The second reader should pick up where the first reader stops. If additional practice is needed, the second reader can reread what the first reader read.
• While reading, the partners can help each other with words or understanding, as needed.
• The readers can then change roles and follow the same procedure.
• Encourage pairs to ask each other about what was read and use illustrations (if applicable) as talking points, as well: "What was your page about? What was your favorite part?"
• Students may record their notes and feedback on a recording sheet.

Implementing the Strategy

In order to effectively implement this strategy in the classroom, it is crucial to model the procedure for the students, exactly as you’d like it to be executed.  Once the students are using the strategy, encourage praise, and monitor students as they work.

• Establish a routine for students so that they know the step-by-step procedure to follow during paired/partner reading.  Some things to think about include: Will they read aloud, simultaneously? Will they take turns with each person reading a paragraph? Will one person read while the other person listens and follows along?
• Decide on an error-correction procedure to use when supporting their partners’ reading.  Should they re-read or correct misspoken words?  Should they signal to their partners if they are having difficulties?  Should the listening partner signal to the reading partner if he/she makes a mistake?
• Model the procedure with a partner to ensure that students understand how to use the strategy (be sure to show students both the correct procedure and the incorrect procedure so that they clearly understand the differences).
• Ask students to begin reading in pairs; remind them to adjust their reading speeds (if reading simultaneously) so they stay together.
• Remind students to offer praise and feedback frequently as their partners are reading.
• Monitor and support students as they work.
• Experiment with Paired Reading by switching partners and groups with new texts!
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70 years after brown v. board of education, new research shows rise in school segregation.

As the nation prepares to mark the 70th anniversary of the landmark U.S. Supreme Court ruling in Brown v. Board of Education , a new report from researchers at Stanford and USC shows that racial and economic segregation among schools has grown steadily in large school districts over the past three decades — an increase that appears to be driven in part by policies favoring school choice over integration.

Analyzing data from U.S. public schools going back to 1967, the researchers found that segregation between white and Black students has increased by 64 percent since 1988 in the 100 largest districts, and segregation by economic status has increased by about 50 percent since 1991.

The report also provides new evidence about the forces driving recent trends in school segregation, showing that the expansion of charter schools has played a major role.  

The findings were released on May 6 with the launch of the Segregation Explorer , a new interactive website from the Educational Opportunity Project at Stanford University. The website provides searchable data on racial and economic school segregation in U.S. states, counties, metropolitan areas, and school districts from 1991 to 2022. 

“School segregation levels are not at pre- Brown levels, but they are high and have been rising steadily since the late 1980s,” said Sean Reardon , the Professor of Poverty and Inequality in Education at Stanford Graduate School of Education and faculty director of the Educational Opportunity Project. “In most large districts, school segregation has increased while residential segregation and racial economic inequality have declined, and our findings indicate that policy choices – not demographic changes – are driving the increase.” 

“There’s a tendency to attribute segregation in schools to segregation in neighborhoods,” said Ann Owens , a professor of sociology and public policy at USC. “But we’re finding that the story is more complicated than that.”

Assessing the rise

In the Brown v. Board decision issued on May 17, 1954, the U.S. Supreme Court ruled that racially segregated public schools violated the Equal Protection Clause of the Fourteenth Amendment and established that “separate but equal” schools were not only inherently unequal but unconstitutional. The ruling paved the way for future decisions that led to rapid school desegregation in many school districts in the late 1960s and early 1970s.

Though segregation in most school districts is much lower than it was 60 years ago, the researchers found that over the past three decades, both racial and economic segregation in large districts increased. Much of the increase in economic segregation since 1991, measured by segregation between students eligible and ineligible for free lunch, occurred in the last 15 years.

White-Hispanic and white-Asian segregation, while lower on average than white-Black segregation, have both more than doubled in large school districts since the 1980s. 

Racial-economic segregation – specifically the difference in the proportion of free-lunch-eligible students between the average white and Black or Hispanic student’s schools – has increased by 70 percent since 1991. 

School segregation is strongly associated with achievement gaps between racial and ethnic groups, especially the rate at which achievement gaps widen during school, the researchers said.  

“Segregation appears to shape educational outcomes because it concentrates Black and Hispanic students in higher-poverty schools, which results in unequal learning opportunities,” said Reardon, who is also a senior fellow at the Stanford Institute for Economic Policy Research and a faculty affiliate of the Stanford Accelerator for Learning . 

Policies shaping recent trends 

The recent rise in school segregation appears to be the direct result of educational policy and legal decisions, the researchers said. 

Both residential segregation and racial disparities in income declined between 1990 and 2020 in most large school districts. “Had nothing else changed, that trend would have led to lower school segregation,” said Owens. 

But since 1991, roughly two-thirds of districts that were under court-ordered desegregation have been released from court oversight. Meanwhile, since 1998, the charter sector – a form of expanded school choice – has grown.

Expanding school choice could influence segregation levels in different ways: If families sought schools that were more diverse than the ones available in their neighborhood, it could reduce segregation. But the researchers found that in districts where the charter sector expanded most rapidly in the 2000s and 2010s, segregation grew the most. 

The researchers’ analysis also quantified the extent to which the release from court orders accounted for the rise in school segregation. They found that, together, the release from court oversight and the expansion of choice accounted entirely for the rise in school segregation from 2000 to 2019.

The researchers noted enrollment policies that school districts can implement to mitigate segregation, such as voluntary integration programs, socioeconomic-based student assignment policies, and school choice policies that affirmatively promote integration. 

“School segregation levels are high, troubling, and rising in large districts,” said Reardon. “These findings should sound an alarm for educators and policymakers.”

Additional collaborators on the project include Demetra Kalogrides, Thalia Tom, and Heewon Jang. This research, including the development of the Segregation Explorer data and website, was supported by the Russell Sage Foundation, the Robert Wood Johnson Foundation, and the Bill and Melinda Gates Foundation.   

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Nih official finally admits taxpayers funded gain-of-function research in wuhan — after years of denials.

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It’s about time!

At long last, National Institutes of Health (NIH) principal deputy director Lawrence Tabak admitted to Congress Thursday that US taxpayers funded gain-of-function research at the Wuhan Institute of Virology in China in the months and years before the COVID-19 pandemic.

“Dr. Tabak,” asked Rep. Debbie Lesko (R-Ariz.) of the Select Subcommittee on the Coronavirus Pandemic, “did NIH fund gain-of-function research at the Wuhan Institute of Virology through [Manhattan-based nonprofit] EcoHealth [Alliance]?”

“It depends on your definition of gain-of-function research,” Tabak answered. “If you’re speaking about the generic term, yes, we did.”

The response comes after more than four years of evasions from federal public health officials — including Tabak himself and former National Institute of Allergy and Infectious Diseases (NIAID) director Dr. Anthony Fauci — about the controversial research practice that modifies viruses to make them more infectious.

Tabak added that “this is research, the generic term [gain-of-function], is research that goes on in many, many labs around the country. It is not regulated. And the reason it’s not regulated is it poses no threat or harm to anybody.”

Dr. Bryce Nickels, a professor of genetics at Rutgers University and co-founder of the pandemic oversight group Biosafety Now, told The Post the exchange “was two people talking past each other.”

“Tabak was engaging in the usual obfuscation and semantic manipulation that is so frustrating and pointless,” Nickels said, adding that the NIH bigwig was resisting accountability for risky research that can create pathogens of pandemic potential.

“Instead of addressing this directly, Tabak launched into a useless response about how ‘gain-of-function’ encompasses many types of experiments,” he added.

In July 2023, the US Department of Health and Human Services (HHS) barred the Wuhan Institute of Virology from receiving federal grants for the next 10 years.

EcoHealth Alliance , whose mission statement declares it is “working to prevent pandemics,” had all of its grant funding pulled by HHS for the next three years on Tuesday.

EcoHealth Alliance president Dr. Peter Daszak, in a hearing earlier this month before the House Select Subcommittee on the Coronavirus Pandemic, testified that his organization “never has and did not do gain-of-function research, by definition.”

But that claim directly contradicted Daszak’s private correspondence, including a 2016 email in which he celebrated the end of an Obama administration pause on gain-of-function research.

The EcoHealth head was also called out in sworn testimony to the COVID panel by Dr. Ralph Baric, a leading coronavirologist who initiated the research himself and declared it was “absolutely” gain-of-function.

In an October 2021 letter to Congress, Tabak had acknowledged NIH funded a “limited experiment” at the Wuhan Institute of Virology that tested whether “spike proteins from naturally occurring bat coronaviruses circulating in China were capable of binding to the human ACE2 receptor in a mouse model.”

He did not describe it as gain-of-function research — but disclosed that EcoHealth “failed to report” the bat coronaviruses modified with SARS and MERS viruses had been made 10,000 times more infectious, in violation of its grant terms.

The NIH scrubbed its website of a longstanding definition for gain-of-function research the same day that the letter was sent.

Tabak also noted in his October 2021 letter that the “sequences of the viruses are genetically very distant” from COVID-19 — but other grant proposals from EcoHealth have since drawn scrutiny for their genetic similarities.

Fauci has repeatedly denied that the Wuhan lab research involved gain-of-function experiments, clashing with Republicans in high-profile hearings and “ playing semantics ” with the term during a closed-door interview with the House COVID panel earlier this year.

“He needs to define his definition of gain-of-function research, because as I have through this process in the last three years, read many, many published articles about gain-of-function research, or creation of a chimera, this is a new one,” COVID subcommittee Chairman Brad Wenstrup (R-Ohio) said following Fauci’s grilling in January .

The ex-NIAID head and White House medical adviser under President Biden was escorted by Capitol Police and his attorneys to and from the committee room for his two days of interviews — and repeatedly dodged The Post’s questions about gain-of-function research and pandemic lockdown restrictions.

In 2021, Sen. Rand Paul (R-Ky.) held Fauci’s feet to the fire over the evasions in several hearings.

“The NIH has not ever and does not now fund gain-of-function research in the Wuhan Institute of Virology,” Fauci declared that May.

In another House hearing the same month, then-NIH director Dr. Francis Collins testified that researchers at the Wuhan lab “were not approved by NIH for doing gain-of-function research .”

“We are, of course, not aware of other sources of funds or other activities they might have undertaken outside of what our approved grant allowed,” Collins added cautiously at the time.

That ignorance about what experiments came about as a result of the NIH grants was underscored by Daszak during his COVID subcommittee hearing last week.

The EcoHealth leader acknowledged he had not asked  longtime collaborator and Wuhan Institute of Virology deputy director Shi Zhengli for any viral sequences since before the pandemic began.

In his own closed-door testimony to the House subcommittee released Thursday, Collins echoed Tabak’s comments but went further by saying there “is a generic description of gain-of-function which is utilized in scientific and public conversation, but is not appropriate to apply that to a circumstance where we’re talking about a potential pathogen.”

“We need to be highly cognizant of the risks of gain-of-function technology now that scientific capabilities exist for creating something in a lab that didn’t exist 100 years ago, or even 50 years ago,” Wenstrup told The Post following Thursday’s hearing.

“Drs. Fauci and Collins, over a decade ago, both conceded that there are risks associated with gain-of-function research.”

EcoHealth received more than half a million dollars for its work with the Wuhan Institute of Virology as part of a grant of more than $4 million to study the emergence of bat coronaviruses between 2014 and 2024.

That grant was revoked in 2020, reinstated in 2023 and finally suspended and proposed for debarment this week.

The House subcommittee is still investigating whether COVID-19 accidentally leaked out of a lab in Wuhan, which has been described as the most likely cause of the pandemic by the FBI, US Energy Department, ex-Centers for Disease Control and Prevention (CDC) director Dr. Robert Redfield and former Director of National Intelligence John Ratcliffe .

Nickels also slammed Tabak Thursday for still claiming the evidence points to SARS-CoV-2 originating in a “wild animal market in Wuhan.”

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“No credible scientist still believes this. In fact, the wet market theory has even been refuted by the world’s leading coronavirus expert, Ralph Baric, in his testimony from January,” Nickels said.

The Rutgers prof added that Thursday’s hearing highlighted the lack of oversight for scientific research on pathogens that poses a threat to humans, making it “up to the grantee to oversee themselves,” as Wenstrup put it.

“It’s pure insanity to continue to delegate responsibly for risk/benefit analysis of research that poses an existential threat to humanity to the scientist that will perform the work and their institutions,” Nickels claimed.

“We just had a devastating pandemic likely caused by creation of a [Pathogen with Enhanced Pandemic Potential] in a lab, and yet scientists want the public to trust them that they can police themselves?” he balked. “That’s just total and complete nonsense.”

Fauci is scheduled to answer questions about the gain-of-function research at the Wuhan lab and theories of the origin of the pandemic in a public subcommittee hearing set for June 3.

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Definition of buddy noun from the Oxford Advanced Learner's Dictionary

• an old college buddy of mine
• Howard and Mick were drinking buddies.
• We were good buddies.
• I’d like you to meet an old college buddy of mine.
• acquaintance

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• ‘Where to, buddy?’ the driver asked.
• The school uses a buddy system to pair newcomers with older students.
• Her driving buddy was in trouble.

Other results

• Buddy Holly
• bosom buddy
• buddy movies
• buddy up (to/with somebody)
• buddy up to somebody
• buddy up (with somebody)

Nearby words

Not all data are created equal; some are structured, but most of them are unstructured. Structured and unstructured data are sourced, collected and scaled in different ways and each one resides in a different type of database.

In this article, we will take a deep dive into both types so that you can get the most out of your data.

Structured data—typically categorized as quantitative data—is highly organized and easily decipherable by  machine learning algorithms .  Developed by IBM® in 1974 , structured query language (SQL) is the programming language used to manage structured data. By using a  relational (SQL) database , business users can quickly input, search and manipulate structured data.

Examples of structured data include dates, names, addresses, credit card numbers, among others. Their benefits are tied to ease of use and access, while liabilities revolve around data inflexibility:

• Easily used by machine learning (ML) algorithms:  The specific and organized architecture of structured data eases the manipulation and querying of ML data.
• Easily used by business users:  Structured data do not require an in-depth understanding of different types of data and how they function. With a basic understanding of the topic relative to the data, users can easily access and interpret the data.
• Accessible by more tools:  Since structured data predates unstructured data, there are more tools available for using and analyzing structured data.
• Limited usage:  Data with a predefined structure can only be used for its intended purpose, which limits its flexibility and usability.
• Limited storage options:  Structured data are usually stored in data storage systems with rigid schemas (for example, “ data warehouses ”). Therefore, changes in data requirements necessitate an update of all structured data, which leads to a massive expenditure of time and resources.
• OLAP :  Performs high-speed, multidimensional data analysis from unified, centralized data stores.
• SQLite : (link resides outside ibm.com)  Implements a self-contained,  serverless , zero-configuration, transactional relational database engine.
• MySQL :  Embeds data into mass-deployed software, particularly mission-critical, heavy-load production system.
• PostgreSQL :  Supports SQL and JSON querying as well as high-tier programming languages (C/C+, Java,  Python , among others.).
• Customer relationship management (CRM):  CRM software runs structured data through analytical tools to create datasets that reveal customer behavior patterns and trends.
• Online booking:  Hotel and ticket reservation data (for example, dates, prices, destinations, among others.) fits the “rows and columns” format indicative of the pre-defined data model.
• Accounting:  Accounting firms or departments use structured data to process and record financial transactions.

Unstructured data, typically categorized as qualitative data, cannot be processed and analyzed through conventional data tools and methods. Since unstructured data does not have a predefined data model, it is best managed in  non-relational (NoSQL) databases . Another way to manage unstructured data is to use  data lakes  to preserve it in raw form.

The importance of unstructured data is rapidly increasing.  Recent projections  (link resides outside ibm.com) indicate that unstructured data is over 80% of all enterprise data, while 95% of businesses prioritize unstructured data management.

Examples of unstructured data include text, mobile activity, social media posts, Internet of Things (IoT) sensor data, among others. Their benefits involve advantages in format, speed and storage, while liabilities revolve around expertise and available resources:

• Native format:  Unstructured data, stored in its native format, remains undefined until needed. Its adaptability increases file formats in the database, which widens the data pool and enables data scientists to prepare and analyze only the data they need.
• Fast accumulation rates:  Since there is no need to predefine the data, it can be collected quickly and easily.
• Data lake storage:  Allows for massive storage and pay-as-you-use pricing, which cuts costs and eases scalability.
• Requires expertise:  Due to its undefined or non-formatted nature, data science expertise is required to prepare and analyze unstructured data. This is beneficial to data analysts but alienates unspecialized business users who might not fully understand specialized data topics or how to utilize their data.
• Specialized tools:  Specialized tools are required to manipulate unstructured data, which limits product choices for data managers.
• MongoDB :  Uses flexible documents to process data for cross-platform applications and services.
• DynamoDB :  (link resides outside ibm.com) Delivers single-digit millisecond performance at any scale through built-in security, in-memory caching and backup and restore.
• Hadoop :  Provides distributed processing of large data sets using simple programming models and no formatting requirements.
• Azure :  Enables agile cloud computing for creating and managing apps through Microsoft’s data centers.
• Data mining :  Enables businesses to use unstructured data to identify consumer behavior, product sentiment and purchasing patterns to better accommodate their customer base.
• Predictive data analytics :  Alert businesses of important activity ahead of time so they can properly plan and accordingly adjust to significant market shifts.
• Chatbots :  Perform text analysis to route customer questions to the appropriate answer sources.

While structured (quantitative) data gives a “birds-eye view” of customers, unstructured (qualitative) data provides a deeper understanding of customer behavior and intent. Let’s explore some of the key areas of difference and their implications:

• Sources:  Structured data is sourced from GPS sensors, online forms, network logs, web server logs,  OLTP systems , among others; whereas unstructured data sources include email messages, word-processing documents, PDF files, and others.
• Forms:  Structured data consists of numbers and values, whereas unstructured data consists of sensors, text files, audio and video files, among others.
• Models:  Structured data has a predefined data model and is formatted to a set data structure before being placed in data storage (for example, schema-on-write), whereas unstructured data is stored in its native format and not processed until it is used (for example, schema-on-read).
• Storage:  Structured data is stored in tabular formats (for example, excel sheets or SQL databases) that require less storage space. It can be stored in data warehouses, which makes it highly scalable. Unstructured data, on the other hand, is stored as media files or NoSQL databases, which require more space. It can be stored in data lakes, which makes it difficult to scale.
• Uses:  Structured data is used in machine learning (ML) and drives its algorithms, whereas unstructured data is used in  natural language processing  (NLP) and text mining.

Semi-structured data (for example, JSON, CSV, XML) is the “bridge” between structured and unstructured data. It does not have a predefined data model and is more complex than structured data, yet easier to store than unstructured data.

Semi-structured data uses “metadata” (for example, tags and semantic markers) to identify specific data characteristics and scale data into records and preset fields. Metadata ultimately enables semi-structured data to be better cataloged, searched and analyzed than unstructured data.

• Example of metadata usage:  An online article displays a headline, a snippet, a featured image, image alt-text, slug, among others, which helps differentiate one piece of web content from similar pieces.
• Example of semi-structured data vs. structured data:  A tab-delimited file containing customer data versus a database containing CRM tables.
• Example of semi-structured data vs. unstructured data:  A tab-delimited file versus a list of comments from a customer’s Instagram.

Recent developments in  artificial intelligence  (AI) and machine learning (ML) are driving the future wave of data, which is enhancing business intelligence and advancing industrial innovation. In particular, the data formats and models that are covered in this article are helping business users to do the following:

• Analyze digital communications for compliance:  Pattern recognition and email threading analysis software that can search email and chat data for potential noncompliance.
• Track high-volume customer conversations in social media:  Text analytics and sentiment analysis that enables monitoring of marketing campaign results and identifying online threats.
• Gain new marketing intelligence:  ML analytics tools that can quickly cover massive amounts of data to help businesses analyze customer behavior.

Furthermore, smart and efficient usage of data formats and models can help you with the following:

• Understand customer needs at a deeper level to better serve them
• Create more focused and targeted marketing campaigns
• Track current metrics and create new ones
• Create better product opportunities and offerings
• Reduce operational costs

Whether you are a seasoned data expert or a novice business owner, being able to handle all forms of data is conducive to your success. By using structured, semi-structured and unstructured data options, you can perform optimal data management that will ultimately benefit your mission.

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