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Ethical Considerations in Research | Types & Examples

Published on October 18, 2021 by Pritha Bhandari . Revised on June 22, 2023.

Ethical considerations in research are a set of principles that guide your research designs and practices. Scientists and researchers must always adhere to a certain code of conduct when collecting data from people.

The goals of human research often include understanding real-life phenomena, studying effective treatments, investigating behaviors, and improving lives in other ways. What you decide to research and how you conduct that research involve key ethical considerations.

These considerations work to

  • protect the rights of research participants
  • enhance research validity
  • maintain scientific or academic integrity

Table of contents

Why do research ethics matter, getting ethical approval for your study, types of ethical issues, voluntary participation, informed consent, confidentiality, potential for harm, results communication, examples of ethical failures, other interesting articles, frequently asked questions about research ethics.

Research ethics matter for scientific integrity, human rights and dignity, and collaboration between science and society. These principles make sure that participation in studies is voluntary, informed, and safe for research subjects.

You’ll balance pursuing important research objectives with using ethical research methods and procedures. It’s always necessary to prevent permanent or excessive harm to participants, whether inadvertent or not.

Defying research ethics will also lower the credibility of your research because it’s hard for others to trust your data if your methods are morally questionable.

Even if a research idea is valuable to society, it doesn’t justify violating the human rights or dignity of your study participants.

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Before you start any study involving data collection with people, you’ll submit your research proposal to an institutional review board (IRB) .

An IRB is a committee that checks whether your research aims and research design are ethically acceptable and follow your institution’s code of conduct. They check that your research materials and procedures are up to code.

If successful, you’ll receive IRB approval, and you can begin collecting data according to the approved procedures. If you want to make any changes to your procedures or materials, you’ll need to submit a modification application to the IRB for approval.

If unsuccessful, you may be asked to re-submit with modifications or your research proposal may receive a rejection. To get IRB approval, it’s important to explicitly note how you’ll tackle each of the ethical issues that may arise in your study.

There are several ethical issues you should always pay attention to in your research design, and these issues can overlap with each other.

You’ll usually outline ways you’ll deal with each issue in your research proposal if you plan to collect data from participants.

Voluntary participation means that all research subjects are free to choose to participate without any pressure or coercion.

All participants are able to withdraw from, or leave, the study at any point without feeling an obligation to continue. Your participants don’t need to provide a reason for leaving the study.

It’s important to make it clear to participants that there are no negative consequences or repercussions to their refusal to participate. After all, they’re taking the time to help you in the research process , so you should respect their decisions without trying to change their minds.

Voluntary participation is an ethical principle protected by international law and many scientific codes of conduct.

Take special care to ensure there’s no pressure on participants when you’re working with vulnerable groups of people who may find it hard to stop the study even when they want to.

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Informed consent refers to a situation in which all potential participants receive and understand all the information they need to decide whether they want to participate. This includes information about the study’s benefits, risks, funding, and institutional approval.

You make sure to provide all potential participants with all the relevant information about

  • what the study is about
  • the risks and benefits of taking part
  • how long the study will take
  • your supervisor’s contact information and the institution’s approval number

Usually, you’ll provide participants with a text for them to read and ask them if they have any questions. If they agree to participate, they can sign or initial the consent form. Note that this may not be sufficient for informed consent when you work with particularly vulnerable groups of people.

If you’re collecting data from people with low literacy, make sure to verbally explain the consent form to them before they agree to participate.

For participants with very limited English proficiency, you should always translate the study materials or work with an interpreter so they have all the information in their first language.

In research with children, you’ll often need informed permission for their participation from their parents or guardians. Although children cannot give informed consent, it’s best to also ask for their assent (agreement) to participate, depending on their age and maturity level.

Anonymity means that you don’t know who the participants are and you can’t link any individual participant to their data.

You can only guarantee anonymity by not collecting any personally identifying information—for example, names, phone numbers, email addresses, IP addresses, physical characteristics, photos, and videos.

In many cases, it may be impossible to truly anonymize data collection . For example, data collected in person or by phone cannot be considered fully anonymous because some personal identifiers (demographic information or phone numbers) are impossible to hide.

You’ll also need to collect some identifying information if you give your participants the option to withdraw their data at a later stage.

Data pseudonymization is an alternative method where you replace identifying information about participants with pseudonymous, or fake, identifiers. The data can still be linked to participants but it’s harder to do so because you separate personal information from the study data.

Confidentiality means that you know who the participants are, but you remove all identifying information from your report.

All participants have a right to privacy, so you should protect their personal data for as long as you store or use it. Even when you can’t collect data anonymously, you should secure confidentiality whenever you can.

Some research designs aren’t conducive to confidentiality, but it’s important to make all attempts and inform participants of the risks involved.

As a researcher, you have to consider all possible sources of harm to participants. Harm can come in many different forms.

  • Psychological harm: Sensitive questions or tasks may trigger negative emotions such as shame or anxiety.
  • Social harm: Participation can involve social risks, public embarrassment, or stigma.
  • Physical harm: Pain or injury can result from the study procedures.
  • Legal harm: Reporting sensitive data could lead to legal risks or a breach of privacy.

It’s best to consider every possible source of harm in your study as well as concrete ways to mitigate them. Involve your supervisor to discuss steps for harm reduction.

Make sure to disclose all possible risks of harm to participants before the study to get informed consent. If there is a risk of harm, prepare to provide participants with resources or counseling or medical services if needed.

Some of these questions may bring up negative emotions, so you inform participants about the sensitive nature of the survey and assure them that their responses will be confidential.

The way you communicate your research results can sometimes involve ethical issues. Good science communication is honest, reliable, and credible. It’s best to make your results as transparent as possible.

Take steps to actively avoid plagiarism and research misconduct wherever possible.

Plagiarism means submitting others’ works as your own. Although it can be unintentional, copying someone else’s work without proper credit amounts to stealing. It’s an ethical problem in research communication because you may benefit by harming other researchers.

Self-plagiarism is when you republish or re-submit parts of your own papers or reports without properly citing your original work.

This is problematic because you may benefit from presenting your ideas as new and original even though they’ve already been published elsewhere in the past. You may also be infringing on your previous publisher’s copyright, violating an ethical code, or wasting time and resources by doing so.

In extreme cases of self-plagiarism, entire datasets or papers are sometimes duplicated. These are major ethical violations because they can skew research findings if taken as original data.

You notice that two published studies have similar characteristics even though they are from different years. Their sample sizes, locations, treatments, and results are highly similar, and the studies share one author in common.

Research misconduct

Research misconduct means making up or falsifying data, manipulating data analyses, or misrepresenting results in research reports. It’s a form of academic fraud.

These actions are committed intentionally and can have serious consequences; research misconduct is not a simple mistake or a point of disagreement about data analyses.

Research misconduct is a serious ethical issue because it can undermine academic integrity and institutional credibility. It leads to a waste of funding and resources that could have been used for alternative research.

Later investigations revealed that they fabricated and manipulated their data to show a nonexistent link between vaccines and autism. Wakefield also neglected to disclose important conflicts of interest, and his medical license was taken away.

This fraudulent work sparked vaccine hesitancy among parents and caregivers. The rate of MMR vaccinations in children fell sharply, and measles outbreaks became more common due to a lack of herd immunity.

Research scandals with ethical failures are littered throughout history, but some took place not that long ago.

Some scientists in positions of power have historically mistreated or even abused research participants to investigate research problems at any cost. These participants were prisoners, under their care, or otherwise trusted them to treat them with dignity.

To demonstrate the importance of research ethics, we’ll briefly review two research studies that violated human rights in modern history.

These experiments were inhumane and resulted in trauma, permanent disabilities, or death in many cases.

After some Nazi doctors were put on trial for their crimes, the Nuremberg Code of research ethics for human experimentation was developed in 1947 to establish a new standard for human experimentation in medical research.

In reality, the actual goal was to study the effects of the disease when left untreated, and the researchers never informed participants about their diagnoses or the research aims.

Although participants experienced severe health problems, including blindness and other complications, the researchers only pretended to provide medical care.

When treatment became possible in 1943, 11 years after the study began, none of the participants were offered it, despite their health conditions and high risk of death.

Ethical failures like these resulted in severe harm to participants, wasted resources, and lower trust in science and scientists. This is why all research institutions have strict ethical guidelines for performing research.

If you want to know more about statistics , methodology , or research bias , make sure to check out some of our other articles with explanations and examples.

  • Normal distribution
  • Measures of central tendency
  • Chi square tests
  • Confidence interval
  • Quartiles & Quantiles
  • Cluster sampling
  • Stratified sampling
  • Thematic analysis
  • Cohort study
  • Peer review
  • Ethnography

Research bias

  • Implicit bias
  • Cognitive bias
  • Conformity bias
  • Hawthorne effect
  • Availability heuristic
  • Attrition bias
  • Social desirability bias

Ethical considerations in research are a set of principles that guide your research designs and practices. These principles include voluntary participation, informed consent, anonymity, confidentiality, potential for harm, and results communication.

Scientists and researchers must always adhere to a certain code of conduct when collecting data from others .

These considerations protect the rights of research participants, enhance research validity , and maintain scientific integrity.

Research ethics matter for scientific integrity, human rights and dignity, and collaboration between science and society. These principles make sure that participation in studies is voluntary, informed, and safe.

Anonymity means you don’t know who the participants are, while confidentiality means you know who they are but remove identifying information from your research report. Both are important ethical considerations .

You can only guarantee anonymity by not collecting any personally identifying information—for example, names, phone numbers, email addresses, IP addresses, physical characteristics, photos, or videos.

You can keep data confidential by using aggregate information in your research report, so that you only refer to groups of participants rather than individuals.

These actions are committed intentionally and can have serious consequences; research misconduct is not a simple mistake or a point of disagreement but a serious ethical failure.

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Ethical challenges of researchers in qualitative studies: the necessity to develop a specific guideline

Mahnaz sanjari.

1 Nursing PhD Candidate, School of Nursing and Midwifery, Tehran University of Medical Sciences, Tehran, Iran

Fatemeh Bahramnezhad

Fatemeh khoshnava fomani, mahnaz shoghi.

2 Assistant Professor, School of Nursing and Midwifery, Iran University of Medical Sciences, Tehran, Iran

Mohammad Ali Cheraghi

3 Associate Professor, School of Nursing and Midwifery, Tehran University of Medical Sciences, Tehran, Iran.

Considering the nature of qualitative studies, the interaction between researchers and participants can be ethically challenging for the former, as they are personally involved in different stages of the study. Therefore, formulation of specific ethical guidelines in this respect seems to be essential. The present paper aimed to discuss the necessity to develop explicit guidelines for conducting qualitative studies with regard to the researchers’ role. For this purpose, a literature review was carried out in domestic and international databases by related keywords.

Health care providers who carry out qualitative research have an immense responsibility. As there is no statistical analysis in qualitative studies, the researcher has to both evaluate what he or she observes and to interpret it. Providing researchers with the necessary skills and applying stringent supervision can lead to better extraction of reliable information from qualitative studies. This article presents a debate in order to illustrate how researchers could cover the ethical challenges of qualitative studies and provide applicable and trustworthy outcomes.

Researchers face ethical challenges in all stages of the study, from designing to reporting. These include anonymity, confidentiality, informed consent, researchers’ potential impact on the participants and vice versa. It seems of paramount importance that health care providers, educators and clinicians be well informed of all the different aspects of their roles when acting as qualitative researchers. Hence, these adroit roles need to be well defined, and the use of practical guidelines and protocols in all stages of qualitative studies should be encouraged.


In the recent millennium, the constant trend of change in the demands of the community as well as transforming the trend of knowledge production has highlighted the necessity for researchers to adopt a more comprehensive approach. Increasingly, many academic disciplines are utilizing qualitative research (QR) as the qualitative method investigating the why and how of the process of a developed concept ( 1 , 2 ). Qualitative research is sometimes defined as interpretive research, and as interpretations can be incorrect or biased, the findings may be controversial ( 3 ). However, qualitative research is not only useful as the first stage of quantitative research, but can also play a key role in ‘validating’ it or in providing a different viewpoint on the same social phenomena ( 4 ).

Qualitative studies tend to use methods that result in text production rather than numerical outputs. Given that the researcher is considered to be the research instrument, and the plan of inquiry needs to be developed and altered as the study progresses, a qualitative researcher cannot depend upon traditional approaches to address certain concerns such as bias and credibility. Therefore, learning from a series of mistakes is often considered an integral part of qualitative research ( 5 , 6 ).

In this study, a literature review was carried out in international electronic databases including PubMed, Web of Sciences, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Scopus, Ebsco, EMBASE and Science Direct without any time limitation, using the search terms “qualitative research”, “researchers’ role”, “ethical challenges” and “ethical guidelines”. These keywords were also searched on national electronic databases including Scientific Information Database (SID), Iran Medex and Medical Articles Library (Medlib) using the same strategy.

Authors of the present article endeavor to shine a light on the ethical issues affecting researchers and propose strategies to face the ethical challenges of qualitative studies, so as to provide applicable and trustworthy outcomes. This could be the basis for the formulation of specific ethical guidelines in this regard.

An overview on qualitative research in health care

Up to the 1970s, qualitative research was solely employed by anthropologists and sociologists. During the 1970s and 1980s, however, it was favored by various disciplines and experts of different branches of science and humanity such as health care, psychology , nursing, management, political science , education, and communication studies ( 2 , 7 ).

Qualitative research has been conducted in the field of nursing in order to identify, describe and explain related concepts, experiences and phenomena and to develop the nursing knowledge. Nursing professionals simultaneously introduced qualitative research to their peers. Since 1970, qualitative research has been performed to achieve the concepts of patient care and other main perceptions in the nursing profession. Qualitative studies provide nurses with sensitivity to the lived experiences of individuals from different nursing care aspects ( 4 , 8 ).

Role of researchers in qualitative studies

In the case of nurses who perform qualitative research, ethical issues are raised when the nurse-patient relationship in the research area leads to some degree of therapeutic communication for the participants ( 9 ). Thus, nurse researchers must be aware of the impact of the questioning on the participants, and in order to decrease such harmful effects on human subjects, the “reflexive approach” is recommended ( 10 ).

In qualitative studies researchers are often required to clarify their role in the research process ( 11 ). In the QR procedure the researcher is involved in all stages of the study from defining a concept to design, interview, transcription, analysis, verification and reporting the concepts and themes. Therefore, whenever instruments are involved in qualitative research, a human being will be an integral part of the process ( 12 ).

It is argued that humans have increasingly become the “instrument of choice” for naturalistic research due to certain characteristics: they are highly responsive to environmental stimuli, have the ability to interact with the situation, pull together different pieces of information at multiple levels simultaneously, and perceive situations holistically; moreover, they are able to process findings the instant they become available, can present immediate feedback, and feel unusual responses. Nevertheless, researchers need to improve the abilities that make them appropriate human instruments and consequently, their interpersonal skills are of major importance in natural settings and study processes ( Table 1 ) ( 13 , 14 ).

Researcher’s role in qualitative methods at a glance

Ethical challenges in qualitative studies:

The researcher-participant relationship.

The relationship and intimacy that is established between the researchers and participants in qualitative studies can raise a range of different ethical concerns, and qualitative researchers face dilemmas such as respect for privacy, establishment of honest and open interactions, and avoiding misrepresentations ( 19 ). Ethically challenging situations may emerge if researchers have to deal with contradicting issues and choose between different methodological strategies in conflict arises. In such cases, disagreements among different components such as participants, researchers, researchers’ discipline, the funding body and the society may be inevitable ( 20 , 21 ). Some important ethical concerns that should be taken into account while carrying out qualitative research are: anonymity, confidentiality and informed consent ( 22 ).

According to Richards and Schwartz’ findings ( 22 ), the term ‘confidentiality’ conveys different meanings for health care practitioners and researchers. For health care practitioners, confidentiality means that no personal information is to be revealed except in certain situations. For researchers, however, the duty of confidentiality is less clear and involves elaboration of the form of outcome that might be expected from the study ( 22 , 23 ).

The researcher must endeavor to minimize the possibility of intrusion into the autonomy of study participants by all means. When highly sensitive issues are concerned, children and other vulnerable individuals should have access to an advocate who is present during initial phases of the study, and ideally, during data gathering sessions. It is sometimes even necessary that the researcher clarify in writing which persons can have access to the initial data and how the data might be used ( 24 , 25 ).

Informed consent has been recognized as an integral part of ethics in research carried out in different fields. For qualitative researchers, it is of the utmost importance to specify in advance which data will be collected and how they are to be used ( 26 ). The principle of informed consent stresses the researcher’s responsibility to completely inform participants of different aspects of the research in comprehensible language. Clarifications need to include the following issues: the nature of the study, the participants’ potential role, the identity of the researcher and the financing body, the objective of the research, and how the results will be published and used ( 27 ).

Informed consent naturally requires ongoing negotiation of the terms of agreement as the study progresses ( 26 ). Many people consider it necessary to participate in research that their peers, community and/or society may benefit from. Therefore, qualitative health researchers need to clarify that the research they carry out will benefit science and can contribute to the improvement of health policy ( 5 ).

Research design

The qualitative method is utilized to explain, clarify and elaborate the meanings of different aspects of the human life experience. Therefore, researchers can interpret people’s experiences because they are involved in human activities. The principle of ‘no harm’ to participants ought to be considered by researchers, who should be aware of the potential harms that might be inflicted upon study subjects. Obviously, sometimes a conflict between the right to know (defended on the basis of benefits to the society) and the right of privacy (advocated based on the rights of the individual) may happen ( 27 , 28 ).

There are several effective strategies to protect personal information, for instance secure data storage methods, removal of identifier components, biographical details amendments and pseudonyms (applicable to names of individuals, places and organizations) ( 27 ). Researchers have the responsibility of protecting all participants in a study from potentially harmful consequences that might affect them as a result of their participation. It is getting increasingly common for research ethics committees to seek documented proof of consent in a written, signed, and ideally, witnessed form. Researchers can only do their best to protect their respondent’s identity and hold the information strictly confidential as there would be no guarantee for it otherwise ( 29 ). Furthermore, in investigations of sensitive topics where written consent puts the informants at risk, audio recorded oral consent would be more appropriate ( 30 ).

Development of personal relationships with participants may be inevitable while collecting certain data. Therefore, researchers should seriously consider the potential impact they may have on the participants and vice versa, and details of such interactions should be clearly mentioned in research proposals ( 23 ). Overall, the role of the researcher as (a) stranger, (b) visitor, (c) initiator, (d) insider-expert or other should be well defined and explained ( 3 ). As Brenner quoted Kvale state that, preparing an ethical protocol can cover issues in a qualitative research project from planning through reporting ( 30 ).

Data gathering and data analysis

In qualitative research, data are collected with a focus on multifaceted interviews and narratives to produce a description of the experiences. The researchers, therefore, play the role of a mediator between the experiences of the respondents and the community of concerned people ( 28 , 31 ). The post-interview comment sheet could assist the researcher to note the feelings of informants, as well as interpretations and comments that occurred during the interview ( 32 ).

Data collection needs to be as overt as possible, and findings should be recorded. Although there is no guarantee of absolute confidentiality, openly recording field notes assists participants to decide what they wish to have on the record. In health care research, the problem may be even more exaggerated as the researcher is sometimes the health provider as well ( 33 ).

In comparison with other research methods, ethnography has singular characteristics. When a researcher aims to study the culture of certain people, living amongst them is inevitable. This method of collecting data is a subject of debate from an ethical point of view. Long presence of the researcher amongst people of a particular culture necessitates informed consent. Participants should always be aware of the information that has been obtained and is being recorded, and consent to it. Sometimes this cannot be achieved easily and conflicts may happen, as in studies of cultural and ethnic characteristics ( 18 ).

The physical presence of the researchers within the culture requires them to be responsible for their role and potential consequences on the field. For instance, when criminals or a group of war veterans suffering from a disease are the subject of a study, the risks involved in living amongst them should be considered. Ethnographers must be vigilant about any distractions stemming from close interactions that can be potentially harmful to participants in the long run ( 33 , 34 ). Researchers can benefit from supervision sessions directed at learning, mentoring and skill development, all of which can foster their ability to carry out research without risking their health. Adequate professional supervision (which may be outside of the university) can be of service to researchers in dealing with the potential stress associated with the study ( 35 – 37 ).

In order to gain explicit data, ethnographers need to know the role of instrument details. There are eleven steps defined in ethnography which are meant to assist researchers. These steps include participant observation, ethnographic record, descriptive observation, taxonomic analysis, selected observation, componential analysis, discovering the cultural theme, cultural inventory, and finally writing ethnography ( 38 , 39 ).

Researchers should always be aware of the precise reason for involvement in a study in order to prevent undesirable personal issues. The probability of exposure to vicarious trauma as a result of the interviews needs to be evaluated. Interviewers should be properly scheduled to provide the researcher with sufficient recovery time and reduce the risk of emotional exhaustion, while allowing ample time for analysis of the objective and emotional aspects of the research. It is also necessary for the researcher to be familiar with signs of extreme fatigue and be prepared to take necessary measures before too much harm is done ( 40 – 42 ).

In qualitative studies, researchers have a great responsibility and play many different roles. It is argued that qualitative research that deals with sensitive topics in depth can pose emotional and other risks to both participants and researchers. Clear protocols for dealing with distress should be in place so that both parties involved in research can use them if necessary. It is not usually easy to predict what topics are likely to lead to distress, and researchers should therefore receive sufficient training in predicting traumatic situations.

Preventive measures for researchers who carry out sensitive qualitative studies should include official arrangements for a peer support program consisting of a list of researchers who are involved, or a constellation of researcher support activities aiming at improving psychological fitness in the form of a professional confidence building module. Other such measures include offering adequate supervision to provide opportunities for self-development and self-care, and facilitating the process of self-reflection and self-monitoring.

Strategies for emotional distancing need to be considered and adopted if the research topic or participants have the potential to be emotionally challenging. An appropriate planning should be in place before the commencement of the fieldwork, and it must be perfectly clear how the study should be conducted and what level of relationship development is necessary. Measures must also be taken so that levels of self-disclosure, objective displays of emotion during the interviews, and strategies to end the relationships are well defined and communicated.

One of the most prominent tasks of qualitative researchers is to minimize the flaws in observation and endeavor to gain truthful knowledge. Therefore, it is necessary for researchers to continuously update their investigation skills in terms of methodology and find novel techniques to better carry out studies in the field of health and sociology.

As explained before, qualitative research is carried out in natural settings, which requires researchers to work in close collaboration with other members of the team and under direct supervision to discuss and resolve issues as they arise. Therefore, development of practical strategies and communicating them to researchers can be of great benefit and assist them in conducting more perceptive qualitative studies. It is noteworthy that such research should be directed towards making a difference in people’s lives, improving care delivery in different settings and at all levels, and providing a framework for health sciences without any ethical disturbances.

As a result of the extensive body of research in the field of medical sciences, patients comprise a large proportion of the public who are frequently subjects of studies. Research Ethics Committees are formed to provide independent advice to participants, researchers, funders/sponsors and healthcare organizations on the extent to which research proposals comply with universally endorsed ethical standards.

In the history of social and medical science, there have been a few research studies that seriously injured people, and many more in which their welfare was not sufficiently protected. Nations and research associations have taken steps to prevent hurtful and intrusive research. To return to the matter of privacy, the researcher should not rely solely on the informant to identify possible intrusion, but needs to work at anticipating it in advance. Confidentiality does not necessarily preclude intrusion, as anonymity by itself is not enough to protect a person’s privacy or prevent disclosure of personal issues. Investigators should refrain from soliciting private information that is not closely related to the research question.

Considering the aforementioned challenges, it is recommended to conduct further research in order to provide meticulous and explicit ethical protocols, guidelines and codes with respect to qualitative studies.


The authors would like to offer special thanks to Dr. Ali Tootee for his assistance in the language editing of this article.

UK Statistics Authority

Statistics for the Public Good

Ethical considerations associated with Qualitative Research methods


This high-level guidance has been developed by the UK Statistics Authority’s Centre for Applied Data Ethics (CADE), and the UK Government Data Quality Hub (DQHub), based at the Office for National Statistics (ONS). The guidance can be used as a practical resource to help researchers identify different ethical issues when conducting qualitative research.  

This guidance is not exhaustive but aims to support researchers navigating the ethical issues surrounding qualitative research projects (particularly in relation to primary data collection). It brings together existing literature on qualitative research methods and their ethical concerns. Links to further resources are provided if you would like to read about aspects in more detail.  

The guidance has been created for researchers using qualitative methods within the ONS . However, the ethical considerations discussed, and the mitigations for these, can be more widely applied to all types of qualitative research.  

The guidance is divided into several parts.    

  • An introduction to qualitative research and why ethics matters in this space.   
  • An overview of some of the ethical considerations associated with qualitative research methods, and some potential mitigations for these issues. This includes an overview of some of the qualitative methods used within the ONS.  
  • An ethics checklist which summarises the main points covered in this guidance.    
  • A list of helpful links to further resources.   

Book cover

Qualitative Methodologies in Organization Studies pp 195–213 Cite as

Ethics in Qualitative Research

  • Sylwia Ciuk 4 &
  • Dominika Latusek 5  
  • First Online: 01 December 2017

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In this chapter, we explore a number of ethical questions and ethical dilemmas that can arise at different stages of the research process. Rather than attempting to provide an answer to these or a full overview of the ethical issues encountered by researchers, we aim to sensitize the reader to some of the complexities involved in trying to do qualitative research in an ethically sensitive manner. We see ethics not as a uniform set of rules or a formal institutional requirement but rather as an integral element of research praxis. We therefore consider a number of ethical questions that are likely to arise at different stages of the research process and alert the reader to some ethically important moments that they might encounter. We start by looking at some ethical questions linked to the research design. We then turn to discussing ethical challenges associated with negotiating access, trying to obtain informed consent from participants as well as maintaining and managing relationships with them. We conclude by discussing ethical issues in relation to data presentation.

  • Research ethics
  • Research process
  • Informed consent
  • Data presentation

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Sylwia Ciuk

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Ciuk, S., Latusek, D. (2018). Ethics in Qualitative Research. In: Ciesielska, M., Jemielniak, D. (eds) Qualitative Methodologies in Organization Studies. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-319-65217-7_11

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Ethics in Qualitative Research: Controversies and Contexts

  • By: Martyn Hammersley & Anna Traianou
  • Publisher: SAGE Publications Ltd
  • Publication year: 2012
  • Online pub date: December 23, 2015
  • Discipline: Anthropology
  • Methods: Sensitive topics , Research ethics , Privacy
  • DOI: https:// doi. org/10.4135/9781473957619
  • Keywords: autonomy , ethics of care , freedom , intrinsic value , knowledge , regulations , risk Show all Show less
  • Print ISBN: 9780857021410
  • Online ISBN: 9781473957619
  • Buy the book icon link

Subject index

All social researchers need to think about ethical issues. Their salience has recently been increased by the pressures of ethical regulation, particularly in the case of qualitative research. But what are ethical issues? And how should they be approached? These are not matters about which there is agreement. Ethics in Qualitative Research explores conflicting philosophical assumptions, the diverse social contexts in which ethical problems arise, and the complexities of handling them in practice.

The authors argue that the starting point for any discussion of research ethics must be the values intrinsic to research, above all the commitment to knowledge-production. However, the pursuit of inquiry is rightly constrained by external values, and the book focuses on three of these: minimising harm, respecting autonomy, and protecting privacy. These external values are shown to be far from unequivocal in character, often in conflict with one another (or with the commitments of research), and always subject to situational interpretation and practical judgment. Nevertheless, it is contended that in the present challenging times it is essential that qualitative researchers uphold research values.

Martyn Hammersley is Professor of Educational and Social Research at The Open University.

Anna Traianou is Senior Lecturer in the Department of Educational Studies, Goldsmiths, University of London.

Front Matter

  • About the Authors
  • Introduction
  • Chapter 1 | What Is Ethics?
  • Chapter 2 | The Research Ethos
  • Chapter 3 | The Risk of Harm
  • Chapter 4 | Autonomy and Informed Consent
  • Chapter 5 | Privacy, Confidentiality and Anonymity

Back Matter

  • Conclusion: Challenging Moralism

Ethics in Qualitative Research: A Practical Guide

Profile image of Safary Wa-Mbaleka

2019, International Forum

Qualitative research continues to grow around the world. More and more scholars and institutions of higher education continue to embrace it. Publications must continue to be on practical ways of conducting qualitative research in general and conducting it especially ethically. This paper is focused primarily on practical ways of enhancing ethical practices in qualitative research. While many qualitative research books and articles discuss ethical considerations, it is good to have a paper that synthesizes effective strategies to enhance ethics in a much more practical way. This paper goes from the definition of ethics to the importance of ethical practices and to the implementation of practical considerations before, during, and after data collection in qualitative research. This paper is not meant to be exhaustive; however, it should be a good guide for qualitative researchers who wish to avail of practical strategies for good ethical practices.

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Qualitative Research Design: Start

Qualitative Research Design

what are qualitative research ethics

What is Qualitative research design?

Qualitative research is a type of research that explores and provides deeper insights into real-world problems. Instead of collecting numerical data points or intervening or introducing treatments just like in quantitative research, qualitative research helps generate hypotheses as well as further investigate and understand quantitative data. Qualitative research gathers participants' experiences, perceptions, and behavior. It answers the hows and whys instead of how many or how much . It could be structured as a stand-alone study, purely relying on qualitative data or it could be part of mixed-methods research that combines qualitative and quantitative data.

Qualitative research involves collecting and analyzing non-numerical data (e.g., text, video, or audio) to understand concepts, opinions, or experiences. It can be used to gather in-depth insights into a problem or generate new ideas for research. Qualitative research is the opposite of quantitative research, which involves collecting and analyzing numerical data for statistical analysis. Qualitative research is commonly used in the humanities and social sciences, in subjects such as anthropology, sociology, education, health sciences, history, etc.

While qualitative and quantitative approaches are different, they are not necessarily opposites, and they are certainly not mutually exclusive. For instance, qualitative research can help expand and deepen understanding of data or results obtained from quantitative analysis. For example, say a quantitative analysis has determined that there is a correlation between length of stay and level of patient satisfaction, but why does this correlation exist? This dual-focus scenario shows one way in which qualitative and quantitative research could be integrated together.

Research Paradigms 

  • Positivist versus Post-Positivist
  • Social Constructivist (this paradigm/ideology mostly birth qualitative studies)

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CMU Libraries is committed to helping members of our community become data experts. To that end, CMU is offering public facing workshops that discuss Qualitative Research, Coding, and Community Engagement best practices.

The following workshops are a part of a broader series on using data. Please follow the links to register for the events. 

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Using Community Data to improve Outcome (Grant Writing)

Survey Design  

Upcoming Event: March 21st, 2024 (12:00pm -1:00 pm)

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Join us for an event to improve, build on and expand the connections between Carnegie Mellon University resources and the Pittsburgh community. CMU resources such as the Libraries and Sustainability Initiative can be leveraged by users not affiliated with the university, but barriers can prevent them from fully engaging.

The conversation features representatives from CMU departments and local organizations about the community engagement efforts currently underway at CMU and opportunities to improve upon them. Speakers will highlight current and ongoing projects and share resources to support future collaboration.

Event Moderators:

Taiwo Lasisi, CLIR Postdoctoral Fellow in Community Data Literacy,  Carnegie Mellon University Libraries

Emma Slayton, Data Curation, Visualization, & GIS Specialist,  Carnegie Mellon University Libraries

Nicky Agate , Associate Dean for Academic Engagement, Carnegie Mellon University Libraries

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Qualitative Research Methods

What are Qualitative Research methods?

Qualitative research adopts numerous methods or techniques including interviews, focus groups, and observation. Interviews may be unstructured, with open-ended questions on a topic and the interviewer adapts to the responses. Structured interviews have a predetermined number of questions that every participant is asked. It is usually one-on-one and is appropriate for sensitive topics or topics needing an in-depth exploration. Focus groups are often held with 8-12 target participants and are used when group dynamics and collective views on a topic are desired. Researchers can be participant observers to share the experiences of the subject or non-participant or detached observers.

What constitutes a good research question? Does the question drive research design choices?

According to Doody and Bailey (2014);

 We can only develop a good research question by consulting relevant literature, colleagues, and supervisors experienced in the area of research. (inductive interactions).

Helps to have a directed research aim and objective.

Researchers should not be “ research trendy” and have enough evidence. This is why research objectives are important. It helps to take time, and resources into consideration.

Research questions can be developed from theoretical knowledge, previous research or experience, or a practical need at work (Parahoo 2014). They have numerous roles, such as identifying the importance of the research and providing clarity of purpose for the research, in terms of what the research intends to achieve in the end.

Qualitative Research Questions

What constitutes a good Qualitative research question?

A good qualitative question answers the hows and whys instead of how many or how much. It could be structured as a stand-alone study, purely relying on qualitative data or it could be part of mixed-methods research that combines qualitative and quantitative data. Qualitative research gathers participants' experiences, perceptions and behavior.

Examples of good Qualitative Research Questions:

What are people's thoughts on the new library? 

How does it feel to be a first-generation student attending college?

Difference example (between Qualitative and Quantitative research questions):

How many college students signed up for the new semester? (Quan) 

How do college students feel about the new semester? What are their experiences so far? (Qual)

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Foley G, Timonen V. Using Grounded Theory Method to Capture and Analyze Health Care Experiences. Health Serv Res. 2015 Aug;50(4):1195-210. [ PMC free article: PMC4545354 ] [ PubMed: 25523315 ]

Devers KJ. How will we know "good" qualitative research when we see it? Beginning the dialogue in health services research. Health Serv Res. 1999 Dec;34(5 Pt 2):1153-88. [ PMC free article: PMC1089058 ] [ PubMed: 10591278 ]

Huston P, Rowan M. Qualitative studies. Their role in medical research. Can Fam Physician. 1998 Nov;44:2453-8. [ PMC free article: PMC2277956 ] [ PubMed: 9839063 ]

Corner EJ, Murray EJ, Brett SJ. Qualitative, grounded theory exploration of patients' experience of early mobilisation, rehabilitation and recovery after critical illness. BMJ Open. 2019 Feb 24;9(2):e026348. [ PMC free article: PMC6443050 ] [ PubMed: 30804034 ]

Moser A, Korstjens I. Series: Practical guidance to qualitative research. Part 3: Sampling, data collection and analysis. Eur J Gen Pract. 2018 Dec;24(1):9-18. [ PMC free article: PMC5774281 ] [ PubMed: 29199486 ]

Houghton C, Murphy K, Meehan B, Thomas J, Brooker D, Casey D. From screening to synthesis: using nvivo to enhance transparency in qualitative evidence synthesis. J Clin Nurs. 2017 Mar;26(5-6):873-881. [ PubMed: 27324875 ]

Soratto J, Pires DEP, Friese S. Thematic content analysis using ATLAS.ti software: Potentialities for researchs in health. Rev Bras Enferm. 2020;73(3):e20190250. [ PubMed: 32321144 ]

Zamawe FC. The Implication of Using NVivo Software in Qualitative Data Analysis: Evidence-Based Reflections. Malawi Med J. 2015 Mar;27(1):13-5. [ PMC free article: PMC4478399 ] [ PubMed: 26137192 ]

Korstjens I, Moser A. Series: Practical guidance to qualitative research. Part 4: Trustworthiness and publishing. Eur J Gen Pract. 2018 Dec;24(1):120-124. [ PMC free article: PMC8816392 ] [ PubMed: 29202616 ]

Saldaña, J. (2021). The coding manual for qualitative researchers. The coding manual for qualitative researchers, 1-440.

O'Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014 Sep;89(9):1245-51. [ PubMed: 24979285 ]

Palermo C, King O, Brock T, Brown T, Crampton P, Hall H, Macaulay J, Morphet J, Mundy M, Oliaro L, Paynter S, Williams B, Wright C, E Rees C. Setting priorities for health education research: A mixed methods study. Med Teach. 2019 Sep;41(9):1029-1038. [ PubMed: 31141390 ]

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The Top 5 Ethical Considerations in Qualitative Research

what are qualitative research ethics

Qualitative research is a valuable tool for understanding human behavior, experiences, and perspectives. It can be used in a variety of fields including sociology, psychology, education, and business. However, like all research, qualitative research requires careful ethical considerations to ensure that it is conducted in a manner that is respectful, fair, and responsible. This article outlines the top five qualitative research ethics to consider. 

what are qualitative research ethics

Informed Consent 

Informed consent is one of the most important qualitative research ethics to consider in qualitative research. Informed consent means that participants are fully informed about the purpose and nature of the research, the procedures involved, any potential risks or benefits, and how their data will be used. Participants must have the right to refuse to participate or to withdraw from the study at any time. Market Researchers must also obtain written consent from participants and ensure that they understand their participation is voluntary.

In some cases, obtaining informed consent can be challenging. For example, in studies involving vulnerable populations, such as children, obtaining informed consent can be particularly difficult. They may need to consider obtaining written consent from guardians, such as parents or caregivers. Researchers must always be sensitive to the needs and limitations of their participants and find ways to obtain informed consent that are appropriate and respectful. 

Confidentiality and Privacy 

Confidentiality and privacy are essential qualitative research ethics to consider and are often protected by law. Participant’s personal information and responses must always be kept confidential and private. Researchers must take steps to protect the confidentiality of their participants by using pseudonyms or other identifiers such as ID numbers, and by storing data securely. They must also ensure that their research does not invade the privacy of participants by respecting their right to refuse to answer certain survey questions or to have certain information shared. 

In some cases, confidentiality and privacy can be particularly challenging. For example, in studies involving sensitive topics, researchers must take extra precautions to protect the confidentiality of their participants and maintain their trust. They may need to use more secure methods of quality data collection, such as encrypted online surveys or face-to-face interviews conducted in private locations. 

what are qualitative research ethics

Respect for Participants 

Respect for participants is another important ethical consideration in qualitative research. Researchers must be sensitive to the needs, values, and beliefs of their participants, and always treat them with dignity and respect. This means that researchers must be aware of their own biases and assumptions to avoid imposing their own beliefs on their participants. They must also be sensitive to cultural and linguistic differences to find ways to communicate effectively with participants who may have different backgrounds or experiences. 

In addition, researchers must be mindful of the power dynamics involved in research. Participants may feel pressure to answer more positively or to provide the answers they think the researcher wants to hear. Researchers must be careful to ensure that their research is conducted in a manner that is fair and respectful. 

Lastly, researchers must be careful not to overburden their participants with lengthy or intrusive data collection methods. They must also be mindful of the potential for researcher bias in data collection and analysis and take steps to minimize its impact.

Data Collection and Analysis 

Data collection and analysis are essential components of qualitative research, but they also raise concerns in regard to qualitative research ethics. Researchers must ensure that their methods of data collection and analysis are appropriate and valid and that they do not manipulate or alter the data in any way to convey a different story. They must also be transparent about their methods and ensure their research is replicable. 

Use of Findings 

The final ethical consideration in qualitative research is the use of findings. Researchers must use their findings in a responsible and respectful manner to ensure that they are not used to harm or stigmatize participants or groups. They must also be transparent about the limitations of their findings and avoid making sweeping generalizations that may not be supported by the findings.

In addition, researchers must consider the potential impact of their findings on policy and practice. They should use their findings to inform evidence-based decision-making and communicate their results in a clear and accessible manner to stakeholders, policymakers, and the public. By doing so, they can ensure that their research is contributing to positive change and improving the lives of those affected by the issues being studied. Ultimately, conducting ethical qualitative research requires a thoughtful and reflective approach that values the perspectives and experiences of participants, and produces findings that are meaningful and impactful.

Conducting ethical qualitative research requires a commitment to upholding the rights and dignity of participants, while also producing valuable and valid findings. The top five qualitative research ethics to consider include:

  • Obtaining informed consent
  • Protecting confidentiality and privacy
  • Showing respect for participants
  • Conducting appropriate data collection and analysis
  • Using findings responsibly. 

By prioritizing these considerations, researchers can ensure that their research is conducted in a respectful, fair, and responsible manner and produces findings that can contribute to positive and more informed change in society.

About InnovateMR – InnovateMR is a full-service sampling and ResTech company that delivers faster, quality insights from business and consumer audiences utilizing cutting-edge technologies to support agile research. As industry pioneers, InnovateMR provides world-class end-to-end survey programming, targeted international sampling, qualitative and quantitative insights, and customized consultation services to support informed, data-driven strategies, and identify growth opportunities. Known for their celebrated status in customer service and results, InnovateMR combines boutique-level service with extensive global reach to achieve partner success.

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What is Research Ethics?

Research ethics is, broadly, a set of norms for conduct when undertaking research activity. Typically, however, major research institutions and agencies define research ethics as a set of principles for researchers. Some common principles are as follows:

  • Scientific and Social Value - Research is designed to answer specified research question(s). Along these lines, research should adhere to their stated aims and contribute to the scientific body of knowledge on a topic; where appropriate, research should also benefit participants through contributions to the scientific record.
  • Scientific Validity  - Experiments and studies should be designed to get an understandable answer to their questions. This means researchers should consider whether their questions have answers, if their results will be valid, and if their designs follow accepted methodologies.
  • Informed Consent  - Researchers working with human participants should accurately describe research activities to potential participants, including methods, risks, benefits, and alternative options and allow each individual to make a voluntary decision on whether or not to participate.
  • Appropriate Risk-Benefit Ratio  - Uncertainty about the risks of research activity may vary over time for a study; however, at each step of an experiment researchers should minimize the risks and maximize the benefits associated with their work.
  • Respect for Participants  - For those working with human subjects participant privacy, decisions, and debriefing should be of the utmost importance. This means researchers should prioritize keeping shared information confidential and private, respect participants' rights to change their minds, and share developments and findings from the research with all involved.
  • Peer Review  - The scientific community should hold research plans, activities, and products to the highest standards, having peers of researcher(s) ensuring that each step minimizes conflicts of interest and potential risks for those involved.

Key Considerations for Research Ethics

  • Who benefits from the products of research? What resources does the research consume? Is there a way to widen the applicability of the research?
  • Who/what are the funding sources for research? What are the motives for supporting the research?
  • Where and how are the tools for research (lab equipment, supplies, computers) being produced? Is the production process harmful to the communities making the tools?
  • What are the risks and benefits for those involved (especially participants) in the research?
  • Is the research methodology sound? Will peers in the field see it as valid?

Recommended Resources

Connections between Social Justice and Scientific Research. (2019, September 10). Environmental Center. https://www.colorado.edu/ecenter/connections-between-social-justice-and-scientific-research

Guiding Principles for Ethical Research. (2016, March 16). National Institutes of Health (NIH). https://www.nih.gov/health-information/nih-clinical-research-trials-you/guiding-principles-ethical-research

Responsible and Ethical Conduct of Research (RECR). (n.d.). National Science Foundation. Retrieved October 27, 2023, from https://www.nsf.gov/od/recr.jsp

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  • http://orcid.org/0000-0003-4808-3880 Andrew Booth 1 , 2 ,
  • Isolde Sommer 3 , 4 ,
  • Jane Noyes 2 , 5 ,
  • Catherine Houghton 2 , 6 ,
  • Fiona Campbell 1 , 7
  • The Cochrane Rapid Reviews Methods Group and Cochrane Qualitative and Implementation Methods Group (CQIMG)
  • 1 EnSyGN Sheffield Evidence Synthesis Group , University of Sheffield , Sheffield , UK
  • 2 Cochrane Qualitative and Implementation Methods Group (CQIMG) , London , UK
  • 3 Department for Evidence-based Medicine and Evaluation , University for Continuing Education Krems , Krems , Austria
  • 4 Cochrane Rapid Reviews Group & Cochrane Austria , Krems , Austria
  • 5 Bangor University , Bangor , UK
  • 6 University of Galway , Galway , Ireland
  • 7 University of Newcastle upon Tyne , Newcastle upon Tyne , UK
  • Correspondence to Professor Andrew Booth, Univ Sheffield, Sheffield, UK; a.booth{at}sheffield.ac.uk

This paper forms part of a series of methodological guidance from the Cochrane Rapid Reviews Methods Group and addresses rapid qualitative evidence syntheses (QESs), which use modified systematic, transparent and reproducible methodsu to accelerate the synthesis of qualitative evidence when faced with resource constraints. This guidance covers the review process as it relates to synthesis of qualitative research. ‘Rapid’ or ‘resource-constrained’ QES require use of templates and targeted knowledge user involvement. Clear definition of perspectives and decisions on indirect evidence, sampling and use of existing QES help in targeting eligibility criteria. Involvement of an information specialist, especially in prioritising databases, targeting grey literature and planning supplemental searches, can prove invaluable. Use of templates and frameworks in study selection and data extraction can be accompanied by quality assurance procedures targeting areas of likely weakness. Current Cochrane guidance informs selection of tools for quality assessment and of synthesis method. Thematic and framework synthesis facilitate efficient synthesis of large numbers of studies or plentiful data. Finally, judicious use of Grading of Recommendations Assessment, Development and Evaluation approach for assessing the Confidence of Evidence from Reviews of Qualitative research assessments and of software as appropriate help to achieve a timely and useful review product.

  • Systematic Reviews as Topic
  • Patient Care

Data availability statement

No data are available. Not applicable. All data is from published articles.

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:  http://creativecommons.org/licenses/by-nc/4.0/ .


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Rapid Qualitative Evidence Synthesis (QES) is a relatively recent innovation in evidence synthesis and few published examples currently exists.

Guidance for authoring a rapid QES is scattered and requires compilation and summary.


This paper represents the first attempt to compile current guidance, illustrated by the experience of several international review teams.

We identify features of rapid QES methods that could be accelerated or abbreviated and where methods resemble those for conventional QESs.


This paper offers guidance for researchers when conducting a rapid QES and informs commissioners of research and policy-makers what to expect when commissioning such a review.


This paper forms part of a series from the Cochrane Rapid Reviews Methods Group providing methodological guidance for rapid reviews. While other papers in the series 1–4 focus on generic considerations, we aim to provide in-depth recommendations specific to a resource-constrained (or rapid) qualitative evidence synthesis (rQES). 5 This paper is accompanied by recommended resources ( online supplemental appendix A ) and an elaboration with practical considerations ( online supplemental appendix B ).

Supplemental material

The role of qualitative evidence in decision-making is increasingly recognised. 6 This, in turn, has led to appreciation of the value of qualitative evidence syntheses (QESs) that summarise findings across multiple contexts. 7 Recognition of the need for such syntheses to be available at the time most useful to decision-making has, in turn, driven demand for rapid qualitative evidence syntheses. 8 The breadth of potential rQES mirrors the versatility of QES in general (from focused questions to broad overviews) and outputs range from descriptive thematic maps through to theory-informed syntheses (see table 1 ).

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Glossary of important terms (alphabetically)

As with other resource-constrained reviews, no one size fits all. A team should start by specifying the phenomenon of interest, the review question, 9 the perspectives to be included 9 and the sample to be determined and selected. 10 Subsequently, the team must finalise the appropriate choice of synthesis. 11 Above all, the review team should consider the intended knowledge users, 3 including requirements of the funder.

An rQES team, in particular, cannot afford any extra time or resource requirements that might arise from either a misunderstanding of the review question, an unclear picture of user requirements or an inappropriate choice of methods. The team seeks to align the review question and the requirements of the knowledge user with available time and resources. They also need to ensure that the choice of data and choice of synthesis are appropriate to the intended ‘knowledge claims’ (epistemology) made by the rQES. 11 This involves the team asking ‘what types of data are meaningful for this review question?’, ‘what types of data are trustworthy?’ and ‘is the favoured synthesis method appropriate for this type of data?’. 12 This paper aims to help rQES teams to choose methods that best fit their project while understanding the limitations of those choices. Our recommendations derive from current QES guidance, 5 evidence on modified QES methods, 8 13 and practical experience. 14 15

This paper presents an overview of considerations and recommendations as described in table 2 . Supplemental materials including additional resources details of our recommendations and practical examples are provided in online supplemental appendices A and B .

Recommendations for resource-constrained qualitative evidence synthesis (rQES)

Setting the review question and topic refinement

Rapid reviews summarise information from multiple research studies to produce evidence for ‘the public, researchers, policymakers and funders in a systematic, resource-efficient manner’. 16 Involvement of knowledge users is critical. 3 Given time constraints, individual knowledge users could be asked only to feedback on very specific decisions and tasks or on selective sections of the protocol. Specifically, whenever a QES is abbreviated or accelerated, a team should ensure that the review question is agreed by a minimum number of knowledge users with expertise or experience that reflects all the important review perspectives and with authority to approve the final version 2 5 11 ( table 2 , item R1).

Involvement of topic experts can ensure that the rQES is responsive to need. 14 17 One Cochrane rQES saved considerable time by agreeing the review topic within a single meeting and one-phase iteration. 9 Decisions on topics to be omitted are also informed by a knowledge of existing QESs. 17

An information specialist can help to manage the quantity and quality of available evidence by setting conceptual boundaries and logistic limits. A structured question format, such as Setting-Perspective-Interest, phenomenon of-Comparison-Evaluation or Population-Interest, phenomenon of-Context helps in communicating the scope and, subsequently, in operationalising study selection. 9 18

Scoping (of review parameters) and mapping (of key types of evidence and likely richness of data) helps when planning the review. 5 19 The option to choose purposive sampling over comprehensive sampling approaches, as offered by standard QES, may be particularly helpful in the context of a rapid QES. 8 Once a team knows the approximate number and distribution of studies, perhaps mapping them against country, age, ethnicity, etc), they can decide whether or not to use purposive sampling. 12 An rQES for the WHO combined purposive with variation sampling. Sampling in two stages started by reducing the initial number of studies to a more manageable sampling frame and then sampling approximately a third of the remaining studies from within the sampling frame. 20

Sampling may target richer studies and/or privilege diversity. 8 21 A rich qualitative study typically illustrates findings with verbatim extracts from transcripts from interviews or textual responses from questionnaires. Rich studies are often found in specialist qualitative research or social science journals. In contrast, less rich studies may itemise themes with an occasional indicative text extract and tend to summarise findings. In clinical or biomedical journals less rich findings may be placed within a single table or box.

No rule exists on an optimal number of studies; too many studies makes it challenging to ‘maintain insight’, 22 too few does not sustain rigorous analysis. 23 Guidance on sampling is available from the forthcoming Cochrane-Campbell QES Handbook.

A review team can use templates to fast-track writing of a protocol. The protocol should always be publicly available ( table 2 , item R2). 24 25 Formal registration may require that the team has not commenced data extraction but should be considered if it does not compromise the rQES timeframe. Time pressures may require that methods are left suitably flexible to allow well-justified changes to be made as a detailed picture of the studies and data emerge. 26 The first Cochrane rQES drew heavily on text from a joint protocol/review template previously produced within Cochrane. 24

Setting eligibility criteria

An rQES team may need to limit the number of perspectives, focusing on those most important for decision-making 5 9 27 ( table 2 , item R3). Beyond the patients/clients each additional perspective (eg, family members, health professionals, other professionals, etc) multiplies the additional effort involved.

A rapid QES may require strict date and setting restrictions 17 and language restrictions that accommodate the specific requirements of the review. Specifically, the team should consider whether changes in context over time or substantive differences between geographical regions could be used to justify a narrower date range or a limited coverage of countries and/or languages. The team should also decide if ‘indirect evidence’ is to substitute for the absence of direct evidence. An rQES typically focuses on direct evidence, except when only indirect evidence is available 28 ( table 2 , item R4). Decisions on relevance are challenging—precautions for swine influenza may inform precautions for bird influenza. 28 A smoking ban may operate similarly to seat belt legislation, etc. A review team should identify where such shared mechanisms might operate. 28 An rQES team must also decide whether to use frameworks or models to focus the review. Theories may be unearthed within the topic search or be already known to team members, fro example, Theory of Planned Behaviour. 29

Options for managing the quantity and quality of studies and data emerge during the scoping (see above). In summary, the review team should consider privileging rich qualitative studies 2 ; consider a stepwise approach to inclusion of qualitative data and explore the possibility of sampling ( table 2 , item R5). For example, where data is plentiful an rQES may be limited to qualitative research and/or to mixed methods studies. Where data is less plentiful then surveys or other qualitative data sources may need to be included. Where plentiful reviews already exist, a team may decide to conduct a review of reviews 5 by including multiple QES within a mega-synthesis 28 29 ( table 2 , item R6).

Searching for QES merits its own guidance, 21–23 30 this section reinforces important considerations from guidance specific to qualitative research. Generic guidance for rapid reviews in this series broadly applies to rapid QESs. 1

In addition to journal articles, by far the most plentiful source, qualitative research is found in book chapters, theses and in published and unpublished reports. 21 Searches to support an rQES can (a) limit the number of databases searched, deliberately selecting databases from diverse disciplines, (b) use abbreviated study filters to retrieve qualitative designs and (c) employ high yield complementary methods (eg, reference checking, citation searching and Related Articles features). An information specialist (eg, librarian) should be involved in prioritising sources and search methods ( table 2 , item R7). 11 14

According to empirical evidence optimal database combinations include Scopus plus CINAHL or Scopus plus ProQuest Dissertations and Theses Global (two-database combinations) and Scopus plus CINAHL plus ProQuest Dissertations and Theses Global (three-database combination) with both choices retrieving between 89% and 92% of relevant studies. 30

If resources allow, searches should include one or two specialised databases ( table 2 , item R8) from different disciplines or contexts 21 (eg, social science databases, specialist discipline databases or regional or institutional repositories). Even when resources are limited, the information specialist should factor in time for peer review of at least one search strategy ( table 2 , item R9). 31 Searches for ‘grey literature’ should selectively target appropriate types of grey literature (such as theses or process evaluations) and supplemental searches, including citation chaining or Related Articles features ( table 2 , item R10). 32 The first Cochrane rQES reported that searching reference lists of key papers yielded an extra 30 candidate papers for review. However, the team documented exclusion of grey literature as a limitation of their review. 15

Study selection

Consistency in study selection is achieved by using templates, by gaining a shared team understanding of the audience and purpose, and by ongoing communication within, and beyond, the team. 2 33 Individuals may work in parallel on the same task, as in the first Cochrane rQES, or follow a ‘segmented’ approach where each reviewer is allocated a different task. 14 The use of machine learning in the specific context of rQES remains experimental. However, the possibility of developing qualitative study classifiers comparable to those for randomised controlled trials offers an achievable aspiration. 34

Title and abstract screening

The entire screening team should use pre-prepared, pretested title and abstract templates to limit the scale of piloting, calibration and testing ( table 2 , item R11). 1 14 The first Cochrane rQES team double-screened titles and abstracts within Covidence review software. 14 Disagreements were resolved with reference to a third reviewer achieving a shared understanding of the eligibility criteria and enhancing familiarity with target studies and insight from data. 14 The team should target and prioritise identified risks of either over-zealous inclusion or over-exclusion specific to each rQES ( table 2 , item R12). 14 The team should maximise opportunities to capture divergent views and perspectives within study findings. 35

Full-text screening

Full-text screening similarly benefits from using a pre-prepared pretested standardised template where possible 1 14 ( table 2 , item R11). If a single reviewer undertakes full-text screening, 8 the team should identify likely risks to trustworthiness of findings and focus quality control procedures (eg, use of additional reviewers and percentages for double screening) on specific threats 14 ( table 2 , item R13). The Cochrane rQES team opted for double screening to assist their immersion within the topic. 14

Data extraction

Data extraction of descriptive/contextual data may be facilitated by review management software (eg, EPPI-Reviewer) or home-made approaches using Google Forms, or other survey software. 36 Where extraction of qualitative findings requires line-by-line coding with multiple iterations of the data then a qualitative data management analysis package, such as QSR NVivo, reaps dividends. 36 The team must decide if, collectively, they favour extracting data to a template or coding direct within an electronic version of an article.

Quality control must be fit for purpose but not excessive. Published examples typically use a single reviewer for data extraction 8 with use of two independent reviewers being the exception. The team could limit data extraction to minimal essential items. They may also consider re-using descriptive details and findings previously extracted within previous well-conducted QES ( table 2 , item R14). A pre-existing framework, where readily identified, may help to structure the data extraction template. 15 37 The same framework may be used to present the findings. Some organisations may specify a preferred framework, such as an evidence-to-decision-making framework. 38

Assessment of methodological limitations

The QES community assess ‘methodological limitations’ rather than use ‘risk of bias’ terminology. An rQES team should pick an approach appropriate to their specific review. For example, a thematic map may not require assessment of individual studies—a brief statement of the generic limitations of the set of studies may be sufficient. However, for any synthesis that underpins practice recommendations 39 assessment of included studies is integral to the credibility of findings. In any decision-making context that involves recommendations or guidelines, an assessment of methodological limitations is mandatory. 40 41

Each review team should work with knowledge users to determine a review-specific approach to quality assessment. 27 While ‘traffic lights’, similar to the outputs from the Cochrane Risk of Bias tool, may facilitate rapid interpretation, accompanying textual notes are invaluable in highlighting specific areas for concern. In particular, the rQES team should demonstrate that they are aware (a) that research designs for qualitative research seek to elicit divergent views, rather than control for variation; (b) that, for qualitative research, the selection of the sample is far more informative than the size of the sample; and (c) that researchers from primary research, and equally reviewers for the qualitative synthesis, need to be thoughtful and reflexive about their possible influences on interpretation of either the primary data or the synthesised findings.

Selection of checklist

Numerous scales and checklists exist for assessing the quality of qualitative studies. In the absence of validated risk of bias tools for qualitative studies, the team should choose a tool according to Cochrane Qualitative and Implementation Methods Group (CQIMG) guidance together with expediency (according to ease of use, prior familiarity, etc) ( table 2 , item R15). 41 In comparison to the Critical Appraisal Skills Programme checklist which was never designed for use in synthesis, 42 the Cochrane qualitative tool is similarly easy to use and was designed for QES use. Work is underway to identify an assessment process that is compatible with QESs that support decision-making. 41 For now the choice of a checklist remains determined by interim Cochrane guidance and, beyond this, by personal preference and experience. For an rQES a team could use a single reviewer to assess methodological limitations, with verification of judgements (and support statements) by a second reviewer ( table 2 , item R16).

The CQIMG endorses three types of synthesis; thematic synthesis, framework synthesis and meta-ethnography ( box 1 ). 43 44 Rapid QES favour descriptive thematic synthesis 45 or framework synthesis, 46 47 except when theory generation (meta-ethnography 48 49 or analytical thematic synthesis) is a priority ( table 2 , item R17).

Choosing a method for rapid qualitative synthesis

Thematic synthesis: first choice method for rQES. 45 For example, in their rapid QES Crooks and colleagues 44 used a thematic synthesis to understand the experiences of both academic and lived experience coresearchers within palliative and end of life research. 45

Framework synthesis: alternative where a suitable framework can be speedily identified. 46 For example, Bright and colleagues 46 considered ‘best-fit framework synthesis’ as appropriate for mapping study findings to an ‘a priori framework of dimensions measured by prenatal maternal anxiety tools’ within their ‘streamlined and time-limited evidence review’. 47

Less commonly, an adapted meta-ethnographical approach was used for an implementation model of social distancing where supportive data (29 studies) was plentiful. 48 However, this QES demonstrates several features that subsequently challenge its original identification as ‘rapid’. 49

Abbrevations: QES, qualitative evidence synthesis; rQES, resource-constrained qualitative evidence synthesis.

The team should consider whether a conceptual model, theory or framework offers a rapid way for organising, coding, interpreting and presenting findings ( table 2 , item R18). If the extracted data appears rich enough to sustain further interpretation, data from a thematic or framework synthesis can subsequently be explored within a subsequent meta-ethnography. 43 However, this requires a team with substantial interpretative expertise. 11

Assessments of confidence in the evidence 4 are central to any rQES that seeks to support decision-making and the QES-specific Grading of Recommendations Assessment, Development and Evaluation approach for assessing the Confidence of Evidence from Reviews of Qualitative research (GRADE-CERQual) approach is designed to assess confidence in qualitative evidence. 50 This can be performed by a single reviewer, confirmed by a second reviewer. 26 Additional reviewers could verify all, or a sample of, assessments. For a rapid assessment a team must prioritise findings, using objective criteria; a WHO rQES focused only on the three ‘highly synthesised findings’. 20 The team could consider reusing GRADE-CERQual assessments from published QESs if findings are relevant and of demonstrable high quality ( table 2 , item R19). 50 No rapid approach to full application of GRADE-CERQual currently exists.

Reporting and record management

Little is written on optimal use of technology. 8 A rapid review is not a good time to learn review management software or qualitative analysis management software. Using such software for all general QES processes ( table 2 , item R20), and then harnessing these skills and tools when specifically under resource pressures, is a sounder strategy. Good file labelling and folder management and a ‘develop once, re-use multi-times’ approach facilitates resource savings.

Reporting requirements include the meta-ethnography reporting guidance (eMERGe) 51 and the Enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) statement. 52 An rQES should describe limitations and their implications for confidence in the evidence even more thoroughly than a regular QES; detailing the consequences of fast-tracking, streamlining or of omitting processes all together. 8 Time spent documenting reflexivity is similarly important. 27 If QES methodology is to remain credible rapid approaches must be applied with insight and documented with circumspection. 53 54 (56)

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Supplementary materials

Supplementary data.

This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

  • Data supplement 1

Contributors All authors (AB, IS, JN, CH, FC) have made substantial contributions to the conception and design of the guidance document. AB led on drafting the work and revising it critically for important intellectual content. All other authors (IS, JN, CH, FC) contributed to revisions of the document. All authors (AB, IS, JN, CH, FC) have given final approval of the version to be published. As members of the Cochrane Qualitative and Implementation Methods Group and/or the Cochrane Rapid Reviews Methods Group all authors (AB, IS, JN, CH, FC) agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

Competing interests AB is co-convenor of the Cochrane Qualitative and Implementation Methods Group. In the last 36 months, he received royalties from Systematic Approaches To a Successful Literature Review (Sage 3rd edition), honoraria from the Agency for Healthcare Research and Quality, and travel support from the WHO. JN is lead convenor of the Cochrane Qualitative and Implementation Methods Group. In the last 36 months, she has received honoraria from the Agency for Healthcare Research and Quality and travel support from the WHO. CH is co-convenor of the Cochrane Qualitative and Implementation Methods Group.

Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

Provenance and peer review Not commissioned; internally peer reviewed.

Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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  • Open access
  • Published: 16 February 2024

Co-producing an online patient public community research hub: a qualitative study exploring the perspectives of national institute for health research (NIHR) research champions in England

  • Eleanor Hoverd 1 ,
  • Sophie Staniszewska 2 ,
  • Jeremy Dale 1 ,
  • Rachel Spencer 1 ,
  • Anne Devrell 3 ,
  • Dena Khan 3 ,
  • Carrol Lamouline 3 ,
  • Sanya Saleem 3 &
  • Pam Smith 3  

Research Involvement and Engagement volume  10 , Article number:  26 ( 2024 ) Cite this article

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Patient and Public Involvement and Engagement (PPIE) should be embedded as part of researchers’ everyday practice. However, this can be challenging. Creating a digital presence for PPIE as part of Higher Education Institutes’ (HEIs) infrastructure may be one way of supporting this. This can support how information is made available to patients and members of the public, but relatively little is known about how HEIs can best do this. Our aim was to develop a university website for patients and members of the public to learn about ways to get actively involved in research and be able to access the results of health and social care research.

This project involved working as partners with five National Institute for Health and Care Research (NIHR) Research Champions. NIHR Research Champions are volunteers who raise awareness and share experiences about health and social care research. Content of a prototype Patient Public Community Research Hub website was co-produced with the Research Champions, and then 15 NIHR Research Champions from across England were asked for their views about the website.

The information collected told us that the Patient Public Community Research Hub was viewed as being beneficial for increasing visibility of PPIE opportunities and sharing the findings of studies though needs further work: to make the information more user-friendly; to improve the methods for directing people to the site and to create new ways of connecting with people. It provides a foundation for further co-development and evaluation. A set of recommendations has been developed that may be of benefit to other HEIs and organisations who are committed to working with patients and members of the public.

Plain language summary

Sharing the results of health and care research studies with patients and members of the public could be improved. In many cases, patients and members of the public do not receive the results of studies they have taken part in. As well, it should also be easy for patients and members of the public to find out about opportunities to get involved with researchers in the development of their research. Universities have an important role to play in providing opportunities for patients and members of the public to be involved in the development of research studies, as well as sharing the findings of their studies. Creating an online patient public community research hub for this purpose was co-produced with National Institute for Health and Care Research (NIHR) Research Champions. The aims of this research were to find out what research volunteers within the National Institute for Health Research (NIHR), in the UK, would like to find on a university website about health and care research. This research aimed to understand how best to raise awareness about how people can get involved in research. It also aimed to understand how best to share information about research, with patients and members of the public, from a university website. Five NIHR Research Champions from diverse ethnic and cultural backgrounds (including younger and older people) helped to develop a set of webpages on a university website, called the Patient Public Community Research Hub. Once the initial online hub was created, online interviews were held with another 15 NIHR Research Champions. The interviews were to help the researcher to understand what they thought about the Patient Public Community Research Hub. The results from the interviews were analysed and grouped into themes. The themes helped to tell us what NIHR Research Champions felt patients and members of the public would want to see on the Patient Public Community Research Hub and what areas needed improving. A co-produced set of recommendations was created with the NIHR Research Champions who helped to shape the Patient Public Community Research Hub. The recommendations are for researchers, other organisations, or services to use. These recommendations along with the findings may help to improve how information gets shared about the results of research and ways in which patients and members of the public can get involved.

Peer Review reports

Higher Educational Institutes (HEIs) have a crucial role to play in fostering Patient Public Involvement and Engagement (PPIE) in health and social care research [ 1 , 2 , 3 , 4 ]. This is needed at institutional, departmental, project and individual researcher levels to ensure PPIE is embedded at this organisational level of the health and care research system and the results of health and care research results are made publicly available [ 5 ]. PPIE encompasses raising awareness of, and enabling involvement in health and social care research[ 6 ]. Ensuring PPIE is rooted in academic practice and within the infrastructure of HEIs is known to be challenging [ 6 ]. Creating ways to support an infrastructure that incorporates PPIE within HEIs, through constructing space for improving knowledge about health and social care research, as well as opportunities for becoming involved may improve engagement[ 7 ]. Evidence is lacking about how HEIs’ websites can support this process. Better understanding is required of what patients and members of the public want and need [ 8 ].

The UK policy paper ‘Saving and Improving Lives: The Future of UK Clinical research delivery’ (Gov.uk 2021) commits to creating a patient-centred research environment, making it easy to participate in health and social care research studies. Ideally, this should include creating a patient-centred online research environment. The National Institute for Health and Care Research (NIHR) Centre for Engagement and Dissemination (CED) has worked with public contributors to develop an improvement plan focussing on partnership working, based upon the original priorities set out in the ‘Going the Extra Mile’ report[ 9 ]. ‘Going the Extra Mile’ was a review of patient and public involvement in research in the NIHR, which is the main funding body for health and social care research in the UK, setting out a clear goal that by 2025 all patients and members of the public should be aware of and have the choice to take part in health and social care research [ 9 ]. One of the five key areas for improvement identified was around online engagement.

It is important to understand how patients and members of the public may access involvement and engagement opportunities about health and social care research online [ 10 , 11 ]. Evidence in the online communications field suggest that websites should be developed according to the unique needs of those they wish to engage with. It is unclear how successful current methods have been [ 12 , 13 , 14 ].

In the project described here, we worked with a stakeholder group of NIHR Research Champions who are volunteers with experience of Patient Public Involvement Engagement (PPIE) to develop the initial content of an online community research hub embedded within Warwick Medical School’s Unit of Academic Primary Care webpages [ 15 ]. The Patient Public Community Research Hub can be found at https://warwick.ac.uk/ppch . It seeks to promote PPIE opportunities and to improve accessibility to the findings of studies completed by this unit [ 16 ]. We then sought to evaluate what NIHR Research Champions felt ought to be part of the Patient Public Community Research Hub and whether it met their needs.

This study aimed to answer the following questions:

What would NIHR Research Champions like to find on the Patient Public Community Research Hub?

How does the Patient Public Community Research Hub raise awareness about PPIE opportunities and share information about health and social care research, to meet the needs of users?

The findings were intended to provide deeper insight into what is important to include in an online Patient Public Community Research Hub for sharing information about research [ 14 , 17 , 18 ], and to generate recommendations for other HEIs, or research organisations who may host such hubs.

Initial development of the hub

A co-production group of five NIHR Research Champions met virtually via Microsoft Teams on four occasions (NIHR 2023). NIHR Research Champions are individuals who may be patients, may have taken part in a health and social care research study before, and have some understanding of the health and social care research process (NIHR 2023). They are involved in various research processes including: reviewing and developing research materials, providing feedback on research grant applications, developing research questions and projects with researchers, promoting research opportunities to members of the public.

The NIHR Research Champions met for hour-long meetings, approximately every six weeks, from the beginning of September 2020 over a period of six months to co-create the initial content of the Patient Public Community Research Hub webpages. The group represented older and younger adults, with three people from diverse ethnic and cultural backgrounds. Co-production is a way of working in equal partnership with patients and the public, sharing responsibility and power [ 19 ]. Through a series of virtual discussions, the group identified topics that were felt to be important to include on the webpages. This included information about local studies, local researchers, general research information, PPI opportunities, patient stories and information on any events. A brief scoping exercise that entailed looking at information provided about PPI in health and care research locally, was undertaken as a starting point, to consider what the basic requirements may be for building a Patient Public Community Research Hub . The top six HEIs who achieved excellence in quality of health and care research according to the most recent Research Excellence Framework (REF) results were selected for the exercise [ 20 ]. The information on these HEI webpages provided general information about PPI, with links to newsletters and local opportunities which helped to gain an understanding of the type of information being shared. None were found to share findings of local research in Plain Language.

An initial prototype was created, allowing the group to be “walked” through the layout and information. Further amendments were made before agreeing that the webpages were ready to be tested through interviews with a wider group of NIHR Research Champions. This approach enabled the NIHR Research Champions to shape the hub from the outset [ 19 ]. Details of their input is described further under the analysis sub-section. Members of the group were reimbursed for their time as per NIHR CED guidance [ 21 ].

Design and setting

Study interviews and meetings were held virtually, and recorded via Microsoft Teams, as discussions with the co-production group and recruitment began during the COVID-19 pandemic when social distancing was required. A qualitative approach was used with ‘think aloud’ interviews, followed by semi-structured interviews one week later [ 22 ]. Think aloud interviews allow the participant to share their thoughts about their experience and reactions when undertaking a set of tasks, in their own environment [ 23 ]. It is a method that helps to identify usability issues [ 23 ]. This information was built upon using semi-structured interviews as a follow-up method [ 24 ]. A topic guide created a structure for the interview discussions, through enabling some flexibility for spontaneity to gather a richer understanding of each individual’s thoughts, feelings and perceptions about an area in which they have some knowledge, or previous experience [ 25 ]. Appendix A presents the topic guide used for semi-structured interviews. The study was approved by University of Warwick’s Biomedical Scientific Ethics Committee (BSREC 151/19-20).

Participants and recruitment

Once the co-development of the prototype of the hub had been completed, 15 NIHR Research Champions were recruited via invitation through the Clinical Research Network (CRN) West Midlands Patient Public Involvement and Engagement (PPIE) leads and via a national website peopleinresearch.com [ 26 ]. The CRN West Midlands is one of fifteen Local CRNs supporting delivery of health and social care research in coordination with the NIHR [ 27 ]. PPIE leads are employed by the CRN West Midlands as research delivery staff who co-ordinate PPIE activities and groups, including NIHR Research Champions. Two PPIE leads were contacted via email with a participant information leaflet, invitation letter and sample consent form to share with their respective PPIE groups of NIHR Research Champions.

All potentially eligible participants who expressed an interest, consented to taking part following discussion of the project and informed consent according to Good Clinical Practice (GCP) guidelines [ 28 ]. Each NIHR Research Champion was interviewed twice, with no participants dropping out.

Data collection

Think aloud interviews lasted no longer than 30 min and enabled participants to ‘walk through’ the webpages of an early prototype of the Patient Public Community Research Hub , to share their thoughts, attitudes and perceptions about the proposed online community research hub. These were followed one week later, by a semi-structured interview lasting up to an hour, to better understand their views and priorities.

Each interview was transcribed verbatim using Microsoft Teams transcription in addition to playing back recordings to correct any anomalies. Analysis was conducted using framework analysis with themes and sub-themes created deductively from the areas of interest articulated by participants and literature review, and inductively where new themes and sub-themes were identified from the transcripts and in discussion with the co-production group [ 29 ]. All authors met to discuss the thematic categories and the co-production group validated final themes through discussion. All quotes are anonymised.

Participants in the study included a diverse range of individuals from the age of 16 years through to early elderly, all of whom had experience of working with health and social care researchers as NIHR Research Champions in England. Six of the interviewees represented people from diverse ethnic and cultural backgrounds in the UK, two of them were young persons from the CRN West Midlands Young Persons Advisory Group (YPAG).

Overall, NIHR Research Champions felt that having a local platform like the Patient Public Community Research Hub would be beneficial to patients and members of the public, though it was important that any local platforms, connect and signpost to national platforms too e.g., Be Part of Research . NIHR Research Champions believed that opportunities to be involved in health and social care research are not visible to patients and members of the public. Presenting these opportunities at a local level may help to embed PPIE within university infrastructures and increase visibility. It may also help to demonstrate to patients and members of the public why PPIE is necessary, how individuals are involved, the impact their involvement has had and what the findings of the research were, which NIHR Research Champions report as not always being fed-back. Four core themes were identified as being important to an online Patient Public Community Research Hub: content; usability; signposting and connectedness (Table  1 ). These themes indicated what was acceptable, as well as areas that required further improvement, with real-world examples provided in the following sections.

Theme 1: content

Think aloud and semi-structured interviews revealed that participants felt that content on the Patient Public Community Research Hub should include the local health and social care research projects and their findings, general information about health and social care research, opportunities to get involved and information about events. Participants identified three key aspects that they thought were important to consider when further developing the content of a Patient Public Community Research Hub : the use of research and technical language, preferences for what should be included and limiting the amount of written text.

Research language

Participants felt that information about health and social care research displayed on the hub may not be well understood by the general public. Some felt that people would need to be ‘research literate’ to understand general information about research because information about research can sometimes be full of jargon and scientific terms that can hinder communication and understanding [ 30 ]. This was seen as a major barrier to the public accessing information from the hub. While the participating NIHR Research Champions felt that they usually understand ‘research language’, but other people who are not regularly involved may not have that same understanding.

‘ If people can understand the language being used, they will be more likely to feel like they can be part of research. ’ Participant 2, Think Aloud Interview

Many felt that information about health and social care research itself including Plain Language Summaries that were on the hub were generally too complex for most people to understand.

‘ You talk about the NIHR which obviously somebody like myself has heard of, but if I knew nothing about research, it would tell me nothing .’ Participant 5, Think Aloud Interview

Preferences for content

Participants felt that there is a wide lack of awareness amongst the public about how they can be involved in research, with a suggestion that more talks or webinars by researchers with the public are needed. Some felt that a move away from more traditional methods of dissemination such as Plain Language Summaries (PLS) to more creative ways of sharing the findings of health and social care research was needed, with a preference for visual information, such as videos and infographics.

‘It can go above and beyond just lay summaries. I’m always keen to think about other ways for dissemination and whether this is the right place to start thinking about, you know, like performing arts again as a kind of visual medium to disseminate research results. It is something that I think is quite underused and could be used a lot more. Or you know, even things like sort of photography or art .’ Participant 7, Semi-structured Interview

Some participants also spoke of their dislike for the term “lay summaries”.

‘ I’ll be honest, I don’t like the term lay summaries, but that’s just personal. It’s widely used. Yeah, I just find it personally a little condescending .’ Participant 8, Semi-structured Interview

General information like newsletters about local health and social care research studies are valued and should be easily located as part of the Patient Public Community Research Hub . Several participants suggested that the hub should provide a link to a glossary of terms as a helpful reference, to improve understanding ‘research language’. Some also suggested that they would like to see the hub share opportunities to talk about potential research ideas with health and social care researchers at universities.

Theme 2: usability

Usability was about creating a user-friendly interface to improve accessibility to PPIE opportunities and increase transparency of findings. Usability focussed on how participants navigated the hub and its audio-visual aspects.

The use of colour and brighter images was felt to be more attractive, especially to younger audiences, with an opportunity to interact in an enjoyable way. The lack of bright images and colour was felt to contribute to an un-inviting, academic feel.

‘ It needs to be more visual, and it needs to be direct if you’re trying to maybe engage with the public and of different ages, especially younger ages, might appreciate some brighter colours .’ Participant 5, Think Aloud Interview

There was a strong preference for a more informal, visual look to the webpages.

‘ It looks like it’s going to be hard work to read through and find something of relevance to you, whereas if they were little pics and icons with the links to give you some kind of inkling what they’re about .’ Participant 4, Think Aloud Interview. ‘ It’s a well-known saying a picture paints 1000 words, but it does, in terms of cognitive accessibility and reducing cognitive load .’ Participant 6, Semi-structured Interview

Theme 3: signposting

Signposting refers to the way in which patients and the public are directed to local and national opportunities about PPIE. Participants felt this is best done by maximising visibility through existing, trustworthy sites e.g., charities. Many reported suspicion over websites, sites, text messages that are not associated with familiar organisations such as the NHS. In addition, providing opportunities for learning and engaging with researchers was felt to be an important element in encouraging people to visit the Patient Public Community Research Hub.

‘ If there could be some sort of collaboration or link with the NHS so that people can get directed to it from an existing NHS web infrastructure, which might be quite good .’ Participant 14, Semi-structured Interview

Participants felt that offering training opportunities and live webinars would encourage people to visit the site, as well as ensuring that it is refreshed with new information based upon feedback from visitors to the site. In order to encourage people to return to the Patient Public Community Research Hub, it was suggested that regular updates through joining a mailing list may be helpful.

Participants questioned how under-served communities such as individuals from diverse ethnic and cultural backgrounds, or homeless people may find, and be included in the hub, suggesting that it is important to consider the local context of a population.

‘ I think trying to broaden engagement amongst the wider population is a challenge definitely, so I think straight away you could potentially be excluding by having an online space. People who aren’t confident using it, don’t want to use it, can’t afford to use it..uh, online information is not easily accessed for members of the traveller community. There are a lot of different groups that can’t access online information so straightaway there is a potential exclusion .’ Participant 8, Semi-structured Interview

Theme 4: connectedness

Connectedness emerged as an important theme around wanting to connect with researchers and how this may be facilitated by the hub. Developing a means of connection with members of the public through the webpages of the hub was viewed as one of the most important areas to address with challenges around digital poverty, cynicism around the internet and the negative impact that online communication can sometimes create.

Some participants highlighted the importance of belonging and what it feels like to be involved with health and social care research. Some participants expressed how this may feel in terms of sharing ownership.

‘ It’s like joining a family . ‘Participant 1, Semi-structured Interview ‘ The patients feel like they are part of the team’ Participant 15, Semi-structured Interview

It was viewed as important to be able to see people’s faces on webpages about health and social care research, adding to the approachability of the research. Images of people should feature on the landing page to the hub.

‘The first thing you see is a friendly face. ’ Participant 12, Think aloud Interview

Participants also liked seeing photographs of other patients and members of the public, accompanied by their stories.

One participant highlighted that establishing relationships that consider the needs of patients and members of the public is an important aspect of engagement.

‘ It’s about respectful relationships well ahead of the research .’ Participant 5, Semi-structured Interview

This study provides valuable understanding about what is likely to be important in developing a virtual Patient Public Community Research Hub, and highlights the importance of carefully considering the structure, content and format of information included in order that it is useable and of interest to patients and members of the public. There was some dislike of the term “lay summary” and a preference for findings of studies to be shared in more interactive formats. Images and videos may help engagement and creating an accessible feel. Linking the Patient Public Community Research Hub from other trusted sites e.g., NHS, or charities, was suggested as being a potential way to signpost people to it. Generally, it was viewed that an online space like this is valuable to patients and members of the public but requires iterative development to keep it updated and engaging.

The information on the webpages was initially determined by a co-production group of NIHR Research Champions with the intention of further co-creation and development based upon the findings of the study. Key recommendations based upon what the participating NIHR Research Champions perceived as being most important are shown in Table  2 .

Further development of an online community research hub

The four key themes identified: content, usability, signposting and connectedness may guide reflection of further development of online community research hubs and will be discussed.

In addressing content, there needs to be a clear understanding of who the hub is for, what it is for and how it can be used. The hub needs to provide information relevant to a local context as well as additional, more general information about health and social care research in a way that is visually attractive, interactive and uses minimal text. Images and bright colours may have the potential to enable engagement and involvement as they are important elements to stories, which can make scientific research more engaging [ 31 ].

The second point relates to usability. It is critical for online web platforms to be easy to use, memorable, engaging and should invoke positive feelings in the user [ 32 ]. NIHR Research Champions also indicated that ensuring usability is inclusive is critical. More needs to be done to tailor a hub around the specific requirements of different communities [ 33 ]. It is recognised that online resources may exclude some groups and therefore, should not be the only method used to engage with patients and members of the public, although there are ways to adapt and make platforms more flexible for a wider range of users [ 13 , 32 ].

Colour palettes should be carefully considered to ensure they do not reduce accessibility to the webpages [ 34 ]. Sensitivity to cultural differences such as the meaning behind different colours, gestures and formatting should be explored in further research with a more diverse group of users [ 32 ]. It is very important for users who are less confident with digital technology, or have limited educational backgrounds, that information is clear and kept to a minimal, to help with attention and understanding [ 34 ]. Providing audio with subtitles, ensuring interfaces are kept simple with user-tested methods for remembering information can create wider accessibility [ 32 ].

Thirdly, signposting to the Patient Public Community Research Hub between, and from, trusted organisations, was important with participants reporting that linking the hub via an existing NHS website, or GP practices would provide credence to the site. Using clear, consistent images that represent trusted health care organisations; e.g., the NHS logo is known to reduce anxiety and stress by patients and members of the public, as it prevents confusion and provides reassurance that a service is genuine and more importantly, is there to look after them [ 35 , 36 ].

Finally, the need for HEIs to engage with communities which focusses more on building trust and mutual benefit is growing. For example, the Health Determinants Research Collaboration (HDRC) Coventry, England, is building a research infrastructure, working with people in Coventry to better understand their needs and health priorities [ 37 ]. However, there is a limit with what has been achieved to date related to a lack of infrastructure and a lack of perceived value in investing in building relationships with communities [ 38 , 39 ]. Creating a sense of belonging was important to NIHR Research Champions in this study and it is critical to think of solutions to improving the relationship of HEIs with patients and members of the public and the role of hubs in doing this. An example of creating connectedness with communities is from the work of True et al. (2021) who report ‘ institutions don’t hug’ but through using photographs and stories to share findings of research this can lead to social connectedness which was especially true in their study with US Veterans – a community that has had negative experiences of healthcare [ 39 ]. From an online perspective, using images that include human faces has been shown to increase engagement on social media platforms such as Instagram, presenting an opportunity to HEIs to showcase its researchers as “ warm, relatable human beings ”[ 40 ].However, it is potentially challenging to consider how to increase connectedness between patients, members of the public and health and care researchers online, as the needs and wants of consumers are continuously evolving, so online approaches to building relationships must keep the pace [ 41 ].Despite the potential challenges, improving connectedness has been shown to improve trust, an attribute of connectedness [ 42 ].

Trust is a crucial aspect of health and care research nurtured through positive relationships and transparency of information communicated to participants in studies, as well as patients and members of the public [ 43 ]. The UK’s Health Research Authority “ We make it easy to do research that people can trust strategy 2022–2023 ” encourages researchers, research departments and institutions to make it easier for patients and members of the public to become involved in research and share their findings. A Patient Public Community Research Hub provides a mechanism for doing so at a unit, or department level. Researchers and research institutions must demonstrate their trustworthiness, which is particularly important for building relationships with under-served communities [ 44 ]. Creating a web-platform to improve connectedness with patients and members of the public could support this strategy, though further research is needed to understand how this may impact on trust.

Increasing numbers of HEIs have dedicated online spaces with information about Patient Public Involvement and Engagement (PPIE) though there is further scope to develop these spaces to be more useful and engaging for patients and the public. However, additional resource to build and maintain such platforms is likely needed. The findings of our study will help to shape current, digital platforms that aim to raise awareness about opportunities for involvement and engagement in health and social care, as well as contributing to advice for researchers about how to best share information of findings. However, this core issue around connectedness warrants further exploration with a diverse range of populations to understand what it means to patients and the public to be connected with HEIs and health and care researchers.

Strengths and limitations

A strength of this study is that it was co-produced with NIHR Research Champions who brought a wide range of experience, prior knowledge and understanding of health and social care research. Some brought experience of being part of a Young Persons Advisory Group at a Children’s hospital, whilst others had the experience of working with Clinical Research Networks to raise awareness about studies, some have been co-applicants, involved in reviewing and developing research materials for studies and one individual has experience of chairing a large network of NIHR Research Champions working closely with senior leaders in a research delivery organisation. This strength, however, is also a limitation in that this group are more research aware and interested than most patients and members of the public. In addition, the group were a mixture of previous professionals and university students (one a PhD student) and so were unrepresentative of the wider population. In addition, there was a small sample size though it was not designed to achieve saturation across the diverse range of individuals that may use a Patient Public Community Research Hub. Future research in this area, co-produced with more specific groups of individuals such as those from Black, Asian or ethnic minority communities, or individuals with learning difficulties would improve understanding of the requirements necessary to ensure a webspace such as this is inclusive. However, there were also methodological strengths of this study through using think aloud interviews followed by semi-structured interviews to consider how a hub may work for patients and members of the public. These methods also meant deeper insight could be sought into how members of the public may approach, engage with and use a hub like this. The study was conducted at one site though may be applicable to other HEIs and health and care organisations wishing to engage with patients and members of the public.

The Patient Public Community Research Hub offers a starting point for future research around the benefits of engaging with patients and the public in an online environment for health and care research. The findings from this study may aid in the development of future patient and public websites, particularly for researchers who need to build their own websites for studies or for HEIs and organisations developing websites for this purpose. Further evaluation of the usability and usefulness of such platforms would advance understanding about their use (Additional file 1 and 2 ).

To produce a resource that is likely to be more widely accessed and used, further modification to the content, methods for signposting and more creative approaches for connecting with people through further co-development and evaluation are required. An online community research hub needs to be engaging and needs to bring the human-side of research to its pages through including more images, stories, interactive elements and opportunities to speak to health and care researchers. Other HEIs and research organisations developing online PPIE sites may benefit from considering the recommendations proposed through this project.

Availability of data and materials

The datasets used and analysed during the current study are available from the corresponding author on reasonable request.


Centre for engagement and dissemination

Clinical research network

Higher educational institute

Health research authority

National institute for health and care research

Patient public involvement and engagement

Patient public involvement

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We would like to thank Helen McGowan, Primary Care Research Projects Officer, Unit of Academic Primary Care, Warwick Medical School, for her support in building the webpages for the Patient Public Community Hub. EH would like to thank the patient public authors who formed the co-production group, for their contribution to the content of the Patient Public Community Hub, ongoing commitment throughout the project and for improving the quality of the research as well as creating recommendations.

This work was supported by a National Institute for Health Research (NIHR), HEE/NIHR ICA Programme Pre-doctoral Clinical Academic Fellowships grant number NIHR 300317. SS is part funded by the NIHR Applied Research Collaboration in the West Midlands, the NIHR Health Protection Research Unit in Gastrointestinal Infections and Health Protection Research Unit in Genomics and Enabling Data.

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Academic Primary Care, Warwick Medical School, Warwick University, Gibbet Hill Rd, Coventry, CV4 7AL, England

Eleanor Hoverd, Jeremy Dale & Rachel Spencer

Warwick Medical School, Warwick Research in Nursing, Warwick University, Coventry, England

Sophie Staniszewska

University of Central London, London, England

Anne Devrell, Dena Khan, Carrol Lamouline, Sanya Saleem & Pam Smith

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EH was the lead researcher. AD, CL, DK, PM, SS contributed to the initial content of the Patient Public Community Hub, critically reviewing and editing the manuscript. JD, SS and RS critically reviewed and edited the manuscript. EH was responsible for the initial design, interviews and drafting of the manuscript. All authors read and approved the final manuscript.

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Correspondence to Eleanor Hoverd .

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Ethics approval and consent to participate.

Ethics approval was sought and approved from Biomedical Scientific Research Ethics Committee, Clinical Trials Unit, Warwick Medical School, Coventry, UK (BSREC 151/19–20 AM01). Written Informed e-consent was obtained from all participants who took part in the research, in accordance with ICH E6 (R2) Good Clinical Practice (GCP).

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All stakeholders and participants consented to the findings being presented anonymously in research articles.

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SS is Co-editor in Chief of Research Involvement and Engagement. None of the other co-authors have any competing interests.

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GRIPP 2 Reporting Checklist.

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Plain Language Summary.

Appendix A: indicative Guide for semi-structured, individual interview

Introduction: Thank you for taking part in the think aloud interview for the online community space on the Unit of Academic Primary Care webpage last week. This space is intended to be an area where local researchers can share opportunities for members of the public to find out about getting involved and engaging in health research. This might include opportunities to comment on the design of health and care research studies, or even be involved in co-producing research. There may be opportunities to participate in health research studies. The online space also aims to provide lay summaries of local health research findings. Following on from your experience of navigating around the online community space, I would like to ask you some questions to get a better understanding of how you found it.

What are your views on the online community space generally? Prompts: Tell me more Why do you think that what might help with that issue?

Who do you think will use this online community space to find out about health research, and why would they do that?

What do you like best about the site’s appearance and format, what would you change?

Are there things you find less helpful about the online community space?

What do you think would be the best ways to raise people’s awareness of this community space, and to attract them to look at it?

How might this online community space help you or your community in other ways? How else could we use it?

Final Are there any other comments you would like to make?

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Hoverd, E., Staniszewska, S., Dale, J. et al. Co-producing an online patient public community research hub: a qualitative study exploring the perspectives of national institute for health research (NIHR) research champions in England. Res Involv Engagem 10 , 26 (2024). https://doi.org/10.1186/s40900-024-00556-4

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Accepted : 06 February 2024

Published : 16 February 2024

DOI : https://doi.org/10.1186/s40900-024-00556-4

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Research Involvement and Engagement

ISSN: 2056-7529

what are qualitative research ethics

Ethics and Qualitative Research Review the American Psychological...

Ethics and Qualitative Research

Review the American Psychological Association's (APA) " Ethical Principles of Psychologists and Code of Conduct. "

Describe a hypothetical research situation related to your area of specialization and discuss three of the many research-related ethical considerations explained in this document that you feel should be addressed.

Answer & Explanation

In the field of behavior analysis, ethical considerations are paramount to ensure the welfare and rights of participants, particularly vulnerable populations such as children with autism. Let's delve deeper into the hypothetical research scenario of studying a behavior intervention for reducing aggressive behavior in these children.

Informed Consent: Obtaining informed consent involves providing detailed information about the study to the parents or legal guardians of the children. This information should include the purpose of the study, the procedures involved, potential risks and benefits, and their right to withdraw from the study at any time without consequence. Given the sensitive nature of the study, it's essential to ensure that the consent process is thorough and that parents fully understand what their participation entails. Additionally, considering the communication challenges that may exist for children with autism, researchers should employ alternative methods, such as visual aids or simplified language, to facilitate understanding.

Confidentiality: Maintaining confidentiality is critical to protect the privacy of participants and their families. Researchers should take measures to ensure that any data collected is stored securely and that identifying information is removed or anonymized. This includes using unique identifiers for participants in place of their names and storing data in encrypted, password-protected files. Furthermore, researchers should clearly explain to participants and their families how their data will be used and reassure them that their information will be kept confidential.

Avoiding Harm: The well-being of participants is paramount in any research study, particularly when working with vulnerable populations. In the case of studying a behavior intervention, researchers must ensure that the intervention is safe and appropriate for the children involved. This may involve conducting a thorough risk assessment and monitoring participants closely for any signs of distress or adverse effects. Researchers should also have a plan in place to address any harm that may occur, including providing access to support services or terminating the study if necessary.

By addressing these ethical considerations in the research study, researchers can conduct their work in a manner that is respectful, responsible, and aligned with the principles of behavior analysis. This not only protects the rights and welfare of participants but also ensures the integrity and credibility of the research findings.

To provide a detailed and comprehensive answer to the question regarding ethical considerations in a behavior analysis research study, follow these steps:

Understand the Research Scenario: Begin by understanding the hypothetical research situation provided. In this case, the scenario involves studying a behavior intervention for reducing aggressive behavior in children with autism.

Review the APA Ethical Principles: Familiarize yourself with the American Psychological Association's "Ethical Principles of Psychologists and Code of Conduct," paying particular attention to sections relevant to research ethics.

Identify Three Ethical Considerations: Select three ethical considerations from the APA guidelines that are pertinent to the research scenario. In this case, you might choose considerations related to informed consent, confidentiality, and avoiding harm.

Apply the Considerations to the Scenario: Describe how each selected ethical consideration would apply to the research scenario. For example, explain how informed consent would be obtained from parents or legal guardians, how confidentiality would be maintained, and how harm to participants would be avoided.

Provide Justification and Examples: Support your discussion with explanations and examples to illustrate how each ethical consideration is essential in ensuring the welfare and rights of participants in the research study.

Reflect on the Impact: Consider the broader implications of addressing these ethical considerations, such as the impact on the validity and credibility of the research findings, as well as the ethical responsibilities of the researcher.

Conclude with Recommendations: Conclude your response by emphasizing the importance of adhering to ethical guidelines in research and provide recommendations for researchers conducting similar studies in the future.

By following this approach, you can provide a well-structured and thoughtful response that addresses the ethical considerations inherent in conducting research in behavior analysis.

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