research on service user involvement

• Research article
• Open access
• Published: 25 October 2014

Service user involvement: impact and participation: a survey of service user and staff perspectives

• Edward Omeni 1 ,
• Marian Barnes 2 ,
• Dee MacDonald 2 ,
• Mike Crawford 3 &
• Diana Rose 1  

BMC Health Services Research volume  14 , Article number:  491 ( 2014 ) Cite this article

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Over the last 20 years governments around the world have promoted user involvement in an effort to improve the quality of health services. Despite the growing emphasis placed on user involvement in England, there is a paucity of recent studies looking at how service users and professionals perceive the outcomes of user involvement policies. This study aimed to examine the overall levels of participation in service user involvement in mental health services among professionals and service users and ascertain their views on the impact of involvement activity on various areas of service delivery.

A cross-sectional survey of service users and providers within community mental health services. The sampling was carried out across three mental health Trusts, two serving people living in inner-city areas and a third covering a mixed rural/urban population. A questionnaire with closed and open ended questions was used to gather the responses of service users and frontline professionals. As a mixed methods study, the analysis consisted of both quantitative and qualitative approaches.

Three hundred and two service users responded to the survey with a response rate of 48%. One hundred and forty three frontline mental health professionals, 26.8% of those approached submitted questionnaires. Almost half of service users (N=138, 45.7%,) and healthcare professionals (N=143, 55.9%) reported having been involved in some form of user involvement activity. Although there were some differences in the responses of service users and frontline professionals, both groups reported that service user involvement was having a positive impact.

Conclusions

The findings show that, within the three mental health trusts examined in this study, service user involvement has become widespread and is perceived by both staff and service users to be a good policy. The study had some important limitations. The questionnaire used was based on existing literature, however it was not subjected to psychometric testing. In addition, response rates were low, particularly among professionals. Despite the limitations, the findings are encouraging, offering important of insight into views and experiences of service users and healthcare staff. Further studies are needed to assess and investigate the topic on a national level.

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In the last three decades governments across Europe and North America have placed increased emphasis on service user involvement and its role in the planning and delivery of healthcare services. User involvement has been promoted by the World Health Organisation and several countries have developed legislation strengthening the influence of service users and giving them greater control over the services they receive [ 1 ]-[ 4 ]. This has been especially true in mental health.

A number of studies have highlighted the benefits of user involvement. It has been credited for improving the information and accessibility of services [ 5 ]. Improvements have also been observed in the coordination of care and in the relationships between clinicians and those receiving treatment [ 6 ]-[ 9 ]. User involvement has also been associated with positive clinical outcomes, such as improved self esteem and confidence, as well as therapeutic benefits resulting from increased social interaction [ 10 ].

Despite this rapid increase in awareness, service user involvement has struggled to overcome significant challenges associated with translating the rhetoric of empowerment and participation into practice [ 11 ].

Several studies have examined how user involvement is conducted in health services [ 12 ]-[ 16 ]. Research has shown that service users have found it difficult to influence service providers and have a real impact on decision-making across all levels of service delivery. Kent and Read [ 12 ] suggested that service user involvement may be progressing faster at the level of individual treatment than at a wider organisational level. Similar findings were made by Storm et al. [ 13 ], who studied service provider perspectives on service user involvement in the Norwegian context. The authors surveyed 184 service providers’ examining reports of user involvement at the individual and departmental levels of community mental health centres. They concluded that service user involvement was occurring on an individual level and service users were involved in decisions about their own treatment; however, there was still considerable progress to be made in involving service users at a departmental level.

Other studies have highlighted issues, such as staff and organisational resistance, as significant barriers to effective user involvement [ 2 ],[ 17 ]-[ 19 ]. In a study evaluating the outcomes of a service user involvement initiatives, Storm et al. [ 20 ] suggests that service user involvement initiatives may not always translate into perceived improvements to services and increased satisfaction with care. Similarly, service improvement initiatives designed to increase awareness of user involvement and enhance participation are not always effective in influencing professional knowledge, practice or attitudes towards user involvement [ 21 ]. Researchers and activists have warned against the dangers of `tokenism’ and service users frequently reported limited if any benefit from their involvement in services [ 2 ],[ 22 ]. In a 2002 UK based study, carried out by Rutter et al. [ 23 ], only 6 out of 25 representatives of service user groups were satisfied with the outcomes of their participation in involvement activity.

Regardless of these challenges, in the last 20 years, UK mental health Policy has continued to promote service user involvement. Successive governments have emphasised the involvement of service users as a means of increasing the acceptability and quality of services [ 24 ]-[ 26 ]. The 1990 NHS and Community Care Act established formal requirements for service user involvement in the planning of services. The New Labour government continued these developments with the 1999 National Service Framework for Mental Health [ 4 ] which positioned service user involvement as one of its central tenets. Developments such as the 2001 Social Care Act, further consolidated the increased focus on user involvement by setting out requirements for all NHS organisations to ensure active participation in treatment decision-making, as well as the planning and evaluation of services. In recent years the coalition government has continued to make changes in the structure of the NHS, emphasising strategies which may give people more choice and control over how their support needs are met [ 27 ].

Despite the rapid growth and mainstreaming of user involvement in recent years, the impact of these policies on the experiences and perceptions of mental health service users and providers has rarely been examined. Given this relative paucity of recent empirical research it is important to understand how the concept of user involvement is perceived by service users and frontline mental health professionals.

This study examines the overall levels of participation in service user involvement across three mental health trusts in the UK. The study also explores the views of service users and professionals on the impact of service user involvement on various areas of service delivery. The main research questions were:

What are the overall levels of participation in service user involvement initiatives among service users and frontline professionals (social workers and psychiatric nurses)?

What are the perceptions of service users and mental health professionals on the impact of service user involvement on key areas of service planning and delivery?

What positive and negative aspects do service users and mental health professionals associate with service user involvement?

In addition, the following hypotheses were examined:

Social Workers are more likely to participate in user involvement and associate benefits with user involvement than psychiatric nurses

High levels of service user involvement are more difficult to achieve in mostly rural, compared to mostly urban areas.

We conducted a cross-sectional survey of service users and professionals within community mental health services. The survey was carried out in three mental health trusts covering a combined area of over 4.5 million residents, of whom around 220,000 are in contact with mental health services. The two inner city Trusts (A and B) service a younger and more ethnically diverse population with greater mental health needs than in other parts of England [ 28 ]. Trust C covered a larger, predominantly rural area. The characteristics of each of the study locations are summarised in Table  1 .

The sampling of the three trusts was conceptual with all study locations selected on the basis of their characteristics. Both collective and individual forms of involvement were of interest, as well as the impact of factors, such as organisational change and service reorganisation, topical concerns considering the significant changes in the structure of the NHS implemented by the UK coalition government since 2010. Trust A had been undergoing significant service reorganisation. Trust B had also undergone recent restructuring and had begun placing significant emphasis on service user representation on the Trust Board. A third location (Trust C) , was added to include the perspectives of service users and staff living in rural areas, as rurality may impact on the nature and outcomes of user involvement. Trust C encompassed an area of about 1,500 square miles including 2 county councils, one city council and three separate social services authorities. The rural setting and size create a number of logistical problems, such as overcoming the difficulty of geographic dispersal and creating opportunities for service users to meet amongst themselves and trust officials and third sector providers.

Based on data obtained from trust managers, all three organisations held similar strategic approaches to user involvement. Structures of service user involvement were present at individual, service and organizational level. Each trust had service user representatives on their boards. The numbers of governors in the three trusts studied were:

Trust A: 39 total, 26 elected (of whom 9 are Service Users), 13 appointed.

Trust B: 36 total, 25 elected (of whom 7 are Service Users), 11 appointed

Trust C: 41 total, 27 elected (of whom 12 are Service Users), 14 appointed.

In addition, all of the trusts continued to commission a small number of user led organizations for the purposes of consultancy, monitoring and providing additional services such as vocational courses, advocacy and peer support.

Data collection

Fieldwork began in July 2011 and was completed in April 2012. A questionnaire with closed and open ended questions was used to collect the responses of both service users and frontline professionals. Professionals were invited to participate using a self-completion online questionnaire, while service users were approached directly by a member of the research team. A different method was adopted for both groups as we aimed to include a wide range of service users including those who may not have had regular internet access.

The survey addressed the respondents’ experience of participating in user involvement initiatives as well as their views about the impact of various forms of user involvement activity. The data collection research team consisted of 5 members including 3 research assistants from the Mental Health Research Network. Survey interviews with service users were carried out on a 1 to 1 basis. The duration of each interview was between 10 to 20 minutes. During the initial phase of the interview respondents were screened for eligibility and provided with information about the study. Verbal consent was sought before proceeding with the survey questions. Considerable care was taken to avoid exerting pressure when eliciting responses from the survey participants. Participants were assured about the anonymity of their information and were encouraged to express themselves freely and independently when completing the questionnaire. Some respondents preferred to give verbal responses to the open ended questions of the survey. In order to minimise the possibility of misinterpretation, the researchers transcribed the responses verbatim, and gave the participant the opportunity to review the transcribed text and request changes if necessary.

Professionals were contacted by email one week prior to the distribution of the electronic survey, giving them the opportunity to review the informational material and opt out of receiving the electronic questionnaire. Basic demographic information was collected but no respondent could be identified.

We aimed to collect responses from 100 service users and 42 frontline professionals (21 Community Psychiatric Nurses and 21 Social Workers) per Trust.

Broad criteria for the selection of service users were applied. These consisted of the following: (a) People above the age 18 years and (b) attending community mental health services for the purpose of treatment and/or assessment. Service users in inpatient settings were not included in the sampling for this study. A purposive sampling method was used and service user participants were recruited from community mental health clinics and local day centres and community based substance misuse services. Quotas were not applied for the recruitment distributions across age groups, gender, ethnicity or diagnosis. It was hoped that by identifying service users through ordinary clinical settings, such as waiting rooms in outpatient clinics it would be possible to obtain the views of a wide range of people attending services in the sampled trusts.

The sampling frame for the survey of frontline mental health professionals was drawn up using data from the human resources departments of each Trust. The survey was targeted at social workers and psychiatric nurses, the main professional groups in community mental health services in England. We were interested in their views, seeing them as relevant informants considering their day-to-day involvement with service users and participation in a wide range of activities including therapeutic work, care planning and management. (The survey was part of a wider research project which included in depth interviews with psychiatrists, senior clinicians, managers and commissioners. These findings will be reported elsewhere.)

Emails were sent to a random sample of psychiatric nurses and social workers asking them to complete the on-line survey. Due to the lower than expected response rate a number of Social Workers and Psychiatric Nurses were approached in person and asked to complete a paper version of the questionnaire. This was based the follow up recruitment of professionals who reported not being able to access the questionnaire electronically due to firewall issues affecting a small number of computers in Trust A and B (n= 41). A further 7 participants were recruited following visits to mental health clinics, which had not been covered in the original sampling for the study.

We predicted that social workers would be more likely than community psychiatric nurses to (1) have participated in service user involvement initiatives and (2) associate a positive benefit with such activity. There is support in the literature for this [ 12 ] and user involvement is a mandatory part of social work education. The sample size was based on the ability to test the hypothesis of a difference in mean outcome scores between two independent groups; social workers and community psychiatric nurses. We therefore estimate the sample size to be able to detect a standardised effect size of 0.5, considered a medium effect size. To be able to detect at least this magnitude of a difference with 80% power at the 5% level of significance (2-sided) we needed 63 participants in each group and this corresponds to 21 in each group per Trust as given above.

Questionnaire design

The survey questionnaire was based on a core set of questions derived from reviews of the literature conducted by Rose et al. [ 29 ] and Crawford et al. [ 5 ]. The survey design also built on the findings generated from the Rose et al’s [ 30 ] user led study investigating the perceptions of activist and non-activist service users on the outcomes of user involvement.

The questionnaire consisted of 3 parts.

Section 1 of the questionnaire contained a series of examples of user involvement activities and service users were asked to identify which, if any, forms of involvement they had participated in. Participants were asked about their involvement in the following areas.

Involvement in running day services

Involvement in running residential services

Involvement in changing in-patient wards

Involvement in appointing staff

Involvement in training staff

Involvement in managing services

Involvement in evaluating services

Involvement in researching services

Involvement in commissioning services

They were also given the option of stating ‘non involvement’ in any of the areas of service user involvement activity, as well as, a free text box to identify other areas of service user involvement they may have experienced.

Based on a modified template of the service user questionnaire Section 1 of the survey targeting professional included the same list of user involvement activities. Instead of personal participation, professionals were asked to identify areas where they had direct experience of involving service users.

Section two of the questionnaire measured service user and staff perceptions about the impact of service user involvement within different contexts of mental health service delivery. Using a five point Likert scale both professional and service user participants could rate the impact as: 1. strongly positive, 2 slightly positive 3 (Having) No Impact, 4 Slightly negative, 5 Strongly negative. Participants were also given the option of answering ‘I Don’t Know’ to any of the questions. The questions focused on the 9 areas of service user involvement listed in Section one of the questionnaire. In addition participants were asked about the overall impact of user involvement. The questions in section two of the questionnaire were presented as follows:

What impact have users had when they have been involved in day services?

What impact have users had when they have been involved in residential services?

What impact have users had when trying to make changes on inpatient wards?

What impact have users had when they have been involved in appointing staff?

Section two of the questionnaire also included a series of open-ended questions. Participants were asked to identify the positive and negative impact of user involvement activity. Those who were unwilling or unable to write their responses in the open ended text box sections of the questionnaire could give a verbal response. In such cases, answers were transcribed by the interviewing researcher.

In Section three of the questionnaire service user participants were asked to provide additional details, including their age (in age bands), ethnicity and gender. Service users were asked additional information about their diagnosis and length of time they had been in contact with mental health services. Mental health professionals were also asked about their professional background (social work, nursing) and length of employment within mental health services.

Data analysis

The analysis of quantitative data involved calculating the frequency and distribution of survey responses. Descriptive statistics were used to: (1) examine the extent of participation in different types of user involvement activities and (2) determine the total proportion of service users and staff who felt that involvement was having a positive impact. All quantitative data analysis was conducted using SPSS (version 20). We used a binary logistic regression to examine factors associated with whether or not service users and front-line professionals had been involved in user involvement activities. Diagnostic categories were omitted from the list of predictor variables due to the low response rate associated with this question in the survey. The dichotomous dependent variable was calculated as the response given by professionals and service users, to the question of whether or not they have had been involved in user involvement activity (yes/no). We used the ‘Enter’ method to perform a standard regression analysis in which the relationship between explanatory variables and the main outcome is adjusted for the impact of all other variables in the model.

A thematic content analysis was used in the review of the data from the open ended sections of the questionnaire [ 31 ]. The analysis was inductive, although it drew on what is already known about the positive and negative outcomes of service user involvement [ 5 ]-[ 10 ]. Responses were read several times by the primary researchers to identify codes and themes. The overarching focus was to examine the positive and negative aspects of service user involvement and encapsulate the responses of study participants to facilitate further analysis. Coding was completed using the qualitative data analysis programme NVIVO [ 32 ].

The study was given ethical approval by the National Research Ethics Service Committee London (Bentham number 11/LO/0584). Agreement was sought with each participating Trust to conduct the survey. Detailed information was given to each participant about the study and its purpose. In the case of professionals the information was provided in written form due to the online recruitment strategy. In the case of service users, verbal information was provided together with supplementary information sheet. Participation in the study was voluntary and respondents could withdraw from completing the questionnaire at any time.

Participants

Three hundred and two service users agreed to participate in the survey. Most participants (n=201, 66.6%) were recruited from community mental health and recovery clinics, with 86 (28.5%) recruited from day centres and 14 (4.6%) from community based substance misuse services. Ninety five professionals submitted a completed online questionnaire. A further 48 members of staff were approached directly by a member of the research team and completed a paper version of the questionnaire. The total recruitment figures including the response rates within each of the sampled Trusts are presented in Table  2 . The descriptive statistics of our sample of service users and professionals are listed in Table  3 .

Levels of involvement and reported impact

Of the 302 surveyed service users 138, (45.7%) reported having been involved in some form of user involvement work. Participation levels among professionals were similarly high with 55.9% of the 143 mental health professionals reporting experience in at least one form of user engagement activity. The number and percentage of service users and mental health professionals involved in one or more areas of user involvement are presented in Table  4 . Table  5 shows the proportion of patients and staff who had been involved in specific activities and had reported a positive impact of the area of user involvement they had experienced.

Both social workers and community psychiatric nurses associated positive benefits with service user involvement in mental health services. Over 70% in both groups felt that user involvement was having a strong or slight positive impact. In contrast, a small minority of professionals felt that user involvement was a negative or no influence. Professional perceptions about the overall impact of service user involvement on mental health services are presented in Figure  1 .

Professional perceptions about the overall impact of service user involvement on mental health services. *Results are broken down by professional group.

Levels of reported positive impact of user involvement differed across the three trusts. Overall, 70% of service user participants in Trust A and 70.2% in Trust B reported an overall positive impact of user involvement compared to participants in the non metropolitan trust (Trust C), of whom only 51.9% felt that user involvement was having a positive impact. Levels of participation across the various areas of user involvement were also significantly lower in Trust C.

Predictors of service user involvement

The results of the logistic regression examining factors which predict professional and service user participation in user involvement are shown in Table  6 . The model shows the professionals in the age group `34 and under’ are more likely than other age groups to be involved in service user involvement. White professionals were associated with a higher likelihood of being involved in user involvement activity. In terms of professional background, social work professionals were more likely to be involved than community psychiatric nurses. Increasing length of employment was a further predictor associated with service user involvement. Among service user participants, increasing length of contact with services and gender were associated with a higher likelihood of participating in involvement initiatives, with men being more likely to have experienced user involvement activities than women. In terms of ethnicity, service users from BME backgrounds were more likely to be involved user involvement initiatives than white service users.

Service users in Trust A were associated with a higher likelihood of being involved in user involvement activity, while service users in Trust C were least likely. As for professionals, participants in Trust C were the most likely to be involved and professionals in Trust B the least likely.

Benefits and drawbacks of service user involvement reported by service users and staff

Table  7 shows the advantages and disadvantages of service user involvement as reported by service users and staff. The results are derived form the qualitative analysis of responses to the open ended survey questions, which elicited people’s insights on the positive and negative aspects of user involvement. Ninety seven (32.1%) service users and 67 (46.9%) mental health professionals provided written or verbal comments in response to these questions.

Advantages of service user involvement

Overall, 35 service users and 26 professionals identified user involvement in decision making as the important outcome and this was the response most frequently highlighted as a positive benefit of user involvement. Professionals seemed to frame this particular benefit in terms of service user `empowerment’. Unlike the professional respondents, references to `empowerment’ were rarely made in the answers given by service users. Instead service users frequently articulated the ability to `exercise control’ and `choice’.

A number of service users and professionals (n= 25; n= 15) described improvement to services as a significant positive outcome of user involvement initiatives. Professional respondents often referred to user involvement as a way of making services more responsive to service user needs. Service users seemed to place less emphasis on this highlighting general service improvement and positive changes to the way service are delivered. Both professional and service user respondents (n= 16, n= 13) identified therapeutic benefits associated with user involvement, as well as the positive impact of engagement activity on self-esteem and overall recovery as a positive benefit of user involvement. In their comments on the benefits of user involvement 11 service users mentioned opportunities for social interaction as a positive aspect of user involvement. Seven mental health professionals identified service users as a valuable source of knowledge, seeing this input as a positive aspect of user involvement.

Negative impact of service user involvement

Both service user and professional respondents generated fewer ideas about the negative impact of user involvement. Service users most frequently referred to tokenism and failure of involvement initiatives to influence change as the main disadvantage of user involvement initiatives (n= 11). In their comments on the negative impacts of user involvement, 8 service users observed that mental health issues may prevent people from taking part in user engagement activity. A number of service users (n= 6) commented on the relatively low status of service user input within mental health service. Service users also highlighted the negative impact of user involvement on the health of those of those who become involved (n= 5). Professionals highlighted the issue of overly negative and unconstructive criticism from campaigners as a negative outcome of user engagement initiatives, with 12 respondents identifying this as a problem. Issues of representativeness were also raised as a negative outcome, with 8 professionals stating that those who become involved may not be representative of the larger population of service users, thus making them unsuitable to speak on behalf of others. In their comments professionals questioned the rationale of identifying service users to represent a wider population of service users particularly if they are `currently well’ articulate and from a background that doesn’t reflect the views of the majority of people receiving services.

Both service users and professionals (n= 9) suggested that user involvement may negatively impact the health and self esteem of those who become involved, citing stress and the high demands associated with user involvement work as a primary cause for this. Tokenistic practices and involvement initiatives that do not lead to change were identified by 6 professionals as a significant negative aspect of service user involvement.

The main purpose of the study was to examine the overall levels of participation in service user involvement across three mental health trusts in the UK. In addition, the study aimed to ascertain the views of service users and professionals on the impact of user involvement on different areas of service delivery. High levels of service user involvement were observed among both professional and service user respondents. Participants who had taken part in user involvement work were likely to report a positive impact of the type of user involvement activity they had experienced. With a significant proportion of the sample recruited from community day centres, service user respondents were most likely to have participated in running day services also reporting a positive impact of user involvement in this area. Service users were also likely to have participated in service evaluation and providing feedback about mental health services. As highlighted by Beresford [ 33 ] in 2002 service user involvement in evaluation was becoming ‘significant and widespread’ within health and social care, with funding providers and service commissioners emphasising the need for evidence that includes service user perspectives.

We found that mental health workers were most likely to have direct experience of user involvement in training, a finding which is reflected in other studies highlighting the mainstream position of user involvement in professional education and training [ 34 ]-[ 37 ]. In addition, a significant majority of professionals felt that service user involvement in training was having a positive impact. Fewer service users had direct experience of user involvement in training. Service users were also less likely than professionals to state that user involvement was having a positive impact in this area. The finding is interesting as it indicates that user involvement in training is highly valued by frontline clinicians with a significant number of professionals having directly experienced user involvement in this area and reporting a positive outcome of such activity. Professionals may be more aware than service users about the positive impact of users on their training and professional education, as service users may not directly see the outcome of their involvement in this area.

A significant number of both professionals and service users had experience in user involvement activity associated with service evaluation, although professionals were more likely than service users to report a positive impact of this form of engagement. This is not surprising as the results of evaluation initiatives, such as the national patient survey, are rarely fed back to patients and professionals may be more aware of the outcomes of service improvement initiatives. Both service users and professionals were least likely to have experience in the area of commissioning services. This may be due to the highly specialised nature of commissioning processes within mental healthcare settings, but it also may reflect the limited opportunities to become involved in his area of user engagement. This is explained further by the findings reported by Storm et al. [ 13 ] who concluded that involvement practices may be evolving faster on the level of individual treatment, as opposed to involvement at a departmental level where considerable progress needs to be made.

Trnobranski [ 38 ] points out that characteristics such as cultural background, age, gender and previous health care experience may influence the extent to which service users are willing to be involved in decisions about their care [ 39 ]. Organisational and professional culture, as well as the approach taken to involving service users may also determine the extent to which various groups of service users can become involved in decision making.

Based on the results of the logistic regression analysis (see Table  6 ) service users who had a longer history of involvement in mental health services were more likely to have experience of user involvement activity. In terms of gender, male service users were more likely to have had experience of service user involvement than female service users. The findings presented here highlight the need for further research focusing on how the approach to gender in mental health service organisation and delivery may influence participation in service user involvement. Ethnicity was also shown to be a predictor for user involvement, with service users from BME backgrounds more likely to have experience in service user involvement activity. This finding is interesting, particularly when considering the context of ongoing concerns about mental health inequalities among minority ethnic groups in England. The results may highlight the increased momentum gained by Black and Minority Ethnic service user-led groups in the two inner city Trusts covered in the study and the growing emphasis placed on involving service user from BME groups [ 40 ].

There was partial support for the first hypothesis of the study. Both groups of professionals were highly positive about service user involvement, however social workers were more likely to have direct experience of user involvement activity (see Table  6 ). In support of our second hypothesis we found that service users in Trust C, a mainly rural location, were less likely to participate in user involvement. When compared to Trust A and B, participation was higher among professionals, however, significantly lower among service users. In addition, only 52% of participants in Trust C felt that user involvement was having a positive impact. Factors, such as the geographical location, transport and the size of the service, may significantly determine how user engagement is experienced by service users and the extent to which they can become involved. This finding emphasises the importance of avoiding a `one size fits all’ approach when implementing user involvement policy and taking account of the environmental characteristics and challenges which may enhance or impede opportunities for involvement.

Similarities were found in the perspectives of users and professionals on the benefits and disadvantages of user involvement activities. Both service users and staff identified positive outcomes of user involvement, such as giving service user a say over how mental health service are delivered. Service users and professionals also highlighted improvements in services as a favourable outcome of involvement activity. Key differences were also identified. While service users identified opportunities for social interaction as a benefit of user involvement, this outcome was not mentioned by professional respondents. The finding is interesting as it underlines a key difference in perspective on the role and advantages of user involvement. As highlighted by Lindow [ 9 ] service providers may have very different priorities on a variety of aspects of service provision. While providers may perceive user involvement as being part of an overall strategy in delivering better and more responsive services, service users may derive personal benefits which are life enhancing in general.

A minority of participants highlighted negative aspects of user involvement. Amongst the disadvantages, professionals highlighted negativity and excessive criticism from service users. The `unrepresentativeness’ of individual service users who engage on behalf of other service users was also mentioned as a negative aspect. Rose et al. [ 41 ] cites this is a common criticism directed at user involvement. Service users who participate in user involvement activities are often labelled as unrepresentative of `ordinary service users’ particularly if involvement is occurring at higher levels, such as participation in strategic or departmental decision making. On the other hand, service users perceived as lacking the skills to participate at higher levels are easily overlooked for being unprofessional or misinformed.

Both service user and professionals highlighted the potential for service user involvement to harm service users. Future research should examine the negative effects of service user involvement on the health and wellbeing of those who take part, in an effort to understand how such problems arise and how they might be prevented in the future.

There is a paucity of recent research assessing the outcomes of user involvement in the UK, in particular following the more recent changes in healthcare, which have further emphasised the central importance of service user involvement in mental health service provision. The findings in this study indicate that user involvement has become widespread and mainstream across the three sampled trusts. Both service users and professionals were satisfied with the outcomes of their participation in user involvement activity. Perceptions and judgements about the impact of user involvement are largely positive, which may indicate that user involvement is perceived by both, service users and professionals, to be a good policy within mental healthcare, worthy of ongoing support and participation.

The findings provide some reason for optimism, particularly when considering the growing emphasis on user involvement across Europe and North America in recent decades. While the growing extent to which service users can exercise control remains encouraging, past studies have warned against the dangers of `tokenism’ highlighting staff and organisational resistance as potential barriers to meaningful involvement and lower levels of participation and awareness of service user involvement at senior organisational levels [ 2 ],[ 13 ],[ 17 ],[ 22 ]. Literature suggests that the involvement of service users at higher decision making levels and the development of user-controlled services are have had a longer history in the USA and Canada [ 42 ],[ 43 ]. While the findings presented in this study point to the mainstreaming and widespread prevalence of service user involvement, it would be prudent to learn from the American and Canadian experience and continue to expand the opportunities through which people can influence and shape the services they receive.

Strengths and limitations

An important strength of the current study lies in its broad perspectives on service user involvement and the diverse range of user involvement mechanisms covered in the study. The design of the questionnaire allowed for a measurement of the level of participation in user involvement, as well as an overview of people’s perceptions on the extent to which various initiatives were having a positive impact. Furthermore participants were able to elaborate on their positive and negative experiences associated with user involvement. The inclusion of professionals, including social work and psychiatric nursing practitioners, added further depth to the study by encompassing multiple viewpoints on the subject, ensuring greater confidence in conclusions drawn from each group of respondents. A further strength of the study was the sampling method. Service users were recruited from ordinary clinical contexts including community mental health clinics, day centres and community based substance misuse services. All participants were recruited and interviewed in person by a member of the research team.

The survey has some important limitations. While the questionnaire we used was based on existing literature, was acceptable to service users and had strong face validity, it was not subjected to formal psychometric testing.

Although service users were asked about their experience of service user involvement in the various areas of user involvement activity, the survey did not address the level of experience of service users. There was a high degree of variation in the interpretation given by service users about the areas of user involvement covered in the survey. For example, many although not all of those who reported experience of user involvement in running day services had not participated in the management of high level decision making within such services but had contributed to in other ways, such as volunteering or had participated in organising groups and activities. Similarly, many of those who reported being involved in service evaluation had simply filled in a questionnaire or submitted a feedback form. However, regardless of the level of service user involvement, service users were optimistic about the positive impact of their engagement in user involvement activity.

Another limitation of the study is possible response bias. Despite researchers asking people to express their thoughts freely we cannot rule out the possibility that some staff and patients felt obliged to give a positive account of any experience of service user involvement activity.

People with an interest in service user involvement may have been both more likely to participate and more likely to express positive views than those with limited experience or interest in the subject. Despite these possible limitations, efforts were made by the research team to include comments (both positive and negative) from those who had not been involved in service user engagement activities.

The poor response rate to the online survey targeting mental health professionals was further limitation. Having only received responses from a small minority of professionals approached to take part in the study, we are uncertain about the extent to which these views can help us understand levels of participation and the views of providers on user involvement. Nonetheless, the responses we obtained regarding the advantages and disadvantages of user involvement offer some insight on the experiences of front line staff working in NHS mental health services.

The study was part of a larger multi-centre investigation. When we drilled down from the survey findings using qualitative, ethnographic methods, the picture was considerably more complex. These findings will be reported elsewhere.

This paper set out to determine the overall levels of service user involvement among professionals and service users within three mental health trusts. The study also examined the views of service users and health care staff on the impact of user involvement on various areas of service delivery. The findings have shown that there is a high level of participation in service user involvement activity and a general endorsement that involvement has a positive impact. The percentage of service users and professionals who reported positive outcomes from activities they have been involved with was high, regardless of the type of activity they had experienced and their level of engagement in user involvement work. The findings suggest that service user involvement has become a mainstream policy across the three trusts examined in the study. Further studies are needed to assess the levels of participation and perceptions of service user involvement on a national level.

Authors’ contributions

DR, MC and MB designed the study. EO and DM collected the data. EO, MC and DR analysed the findings and all authors contributed to the critical appraisal and write up of the paper. All authors read and approved the final manuscript.

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Acknowledgements

This project was funded by the National Institute for Health Research Health Services and Delivery Research (NIHR HS&DR Programme (project number SDO 10/1008/09). Visit the HS&DR Programme website for more information. The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the HS&DR Programme, NIHR, NHS or the Department of Health. DR is supported by a grant to the NIHR BRC at the South London and Maudsley NHS Foundation Trust and the Institute of Psychiatry, King’s College London. We would like to acknowledge the help of Clinical Studies Officers from the Mental Health Research Network in contributing to recruitment for the surveys.

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Omeni, E., Barnes, M., MacDonald, D. et al. Service user involvement: impact and participation: a survey of service user and staff perspectives. BMC Health Serv Res 14 , 491 (2014). https://doi.org/10.1186/s12913-014-0491-7

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Service user reflections on the impact of involvement in research

• Jim Gordon 1 ,
• Sue Franklin 1 &
• Sabrina A. Eltringham 1 , 2  

Research Involvement and Engagement volume  4 , Article number:  11 ( 2018 ) Cite this article

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Public involvement can impact on research, on the public who give advice, on the researchers and the research participants. Evaluating impact is an important part of the research process. Two members of a hospital-based patient research panel and our coordinator have written this paper. Our panel covers a range of rehabilitation and palliative services. These services form the “Therapeutics and Palliative Care Directorate”. We describe how we worked collaboratively with hospital staff and co-produced questionnaires to evaluate the impact of our involvement. We compared the different perspectives of the researchers and panel members on our contribution to the research. We present evidence from these different standpoints, including how our panel made a difference. We found we needed to adapt how we collected the views of the researchers and our members to ensure it was meaningful to our group whilst delivering the wider objective of the hospital. A key finding has been how our involvement has extended into other groups, which has identified opportunities for sharing resources and experience, including areas such as cost effectiveness. Our two-person membership of a high level Board of Academics and Senior Clinicians, which oversees the research we contribute to, has resulted in our opinions influencing the heart of the Directorate’s research strategy. We have learned the importance of a flexible approach as the Directorate changes, and the demands on us grow. This will continue to help us share our own development, successes and experience and extend the benefits from working this way.

Reports about the impact of patient and public involvement in research can be improved by involving patients and research staff more collaboratively to co-produce instruments to measure their involvement. This commentary, written by two members of a hospital-based patient panel and their coordinator for its work, describes how we co-produced instruments to evaluate the impact and effectiveness of our involvement. We present here the results, including our quantitative and qualitative findings, of this patient led evaluation and reflect on how our involvement has made a difference to the research projects and research infrastructure within the hospital in which we operate and on us as a panel.

Existing impact frameworks and guidelines were reviewed. Members co-produced and piloted qualitative questionnaires to identify values associated with patient and public involvement (PPI) from both a researcher and panel member perspective, and collected quantitative metrics to provide descriptive statistics on the type of involvement and activities. Members also produced a comments slip to provide contemporaneous feedback after each meeting.

The panel has reviewed 36 research projects for the Therapeutics and Palliative Care Directorate drawn from speech and language therapy, physiotherapy, occupational therapy, dietetics, podiatry, palliative care services and chaplaincy. Some of the main results of our involvement have been the development of grant applications and making written information more understandable for research participants. Examples of how the Panel made a difference included providing an effective forum for debate by providing practical suggestions to improve research design and identifying potential issues that may not have occurred to the researcher. The panel has had an impact outside of meetings both within the context in which it operates and on the individuals involved. Examples included: influencing the Directorate research agenda, sharing resources with other groups, developing research relationships, and enabling member participation in different roles and settings.

Embedding ourselves within the Directorate research infrastructure has enabled us to adapt to organisational change and actively contribute to the research strategy. There is greater scope for involvement in areas of cost effectiveness and economic evaluation. Increasing member contributions and networking with other groups provides added value as well as cross fertilisation of ideas as part of our widening impact.

Evaluating the impact of our involvement has improved our understanding of what aspects of involvement work best for the panel and the researchers who attend our meetings, and in the different settings that we work in. It has helped us to focus on how we need to develop to maximise our resources going forward.

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Introduction

Patient and Public Involvement (PPI) can have a range of impacts. It can impact on research, on the members of the public who contributed, on the researchers and research participants, and on the wider community [ 1 ]. Increasing evidence about the impact of PPI from the perspective of service users is emerging [ 2 ]. However accounts of impact can be improved by providing more information about the context and mechanism of involvement [ 3 ] and involving service users collaboratively to develop instruments to measure impact [ 4 ]. This commentary describes how members of a patient research panel in a large National Health Service (NHS) Teaching Hospital worked collaboratively with the Trust Research Department and other patient research panels in the hospital to co-produce tools to evaluate the impact of patient involvement from the different perspectives of the researcher and the panel member. We present the results from the evaluation of our panel and discuss how our involvement to date has made a difference to the research projects and research infrastructure within the hospital in which we operate and on us as a panel.

The Therapeutics and Palliative Care Patient Research Panel launched in May 2014 as part of the Directorate’s investment in its research infrastructure and commitment to integrating service users into the research process. The Directorate provides a wide range of diagnostic, rehabilitation and palliative care services, and supports patients with a broad spectrum of acute, chronic and progressive health conditions and diseases. Members were selected based on their direct experience of these services or indirect experience as carers of patients who use these services. These services include speech and language therapy, physiotherapy, occupational therapy, dietetics, psychology, chaplaincy, tissue viability and palliative care services. Many of our members are active users of these services or care for someone who uses these services so their experiences are contemporaneous. The panel meets quarterly, but also offers the facility for members to contribute online for those who can not attend meetings to provide feedback and for researchers the opportunity to have access to the panel between meetings.

The main aim of the panel through face-to-face meetings and providing online feedback between meetings is to ensure that the research being carried out is high quality and patient focused. Members are involved throughout the research process from helping to prioritise research topics; offering feedback on research proposals including applications for ethical approval; providing ideas to improve patient recruitment; to disseminating the findings to the wider public. Another important part of our remit is to raise staff awareness of PPI, our panel, and the value of involving patients and the public in research. We are actively involved in educational and training activities and events. Additionally two members of our panel sit on a high level board of academics and senior clinicians, which oversees the research we contribute to, where they have the opportunity to influence the Directorate’s research strategy.

Evaluating impact is an important part of the research process [ 5 ]. Having contributed to the Directorate’s research for two and half years the panel wanted to know if they had made a difference and felt they had sufficient amount of data to form the basis of an evaluation. As well as being good practice to measure our intervention it was felt an evaluation might improve our involvement by learning from the feedback of researchers as well as our members. The decision to evaluate our activities also coincided with a Trust wide initiative to measure the impact of all its panel activities.

Our co-ordinator attended a meeting with the chairs and co-ordinators of the other hospital patient research panels and the Trust’s Research Department to discuss how the impact of the panels should be measured and evaluated. Existing impact frameworks and guidelines [ 1 , 6 ] were reviewed and we co produced with the other hospital panels and the Research Department separate qualitative questionnaires for panel members and researchers. The aim of the questionnaires was to identify the values associated with PPI from a patient and researcher perspective. It was felt important that as part of the impact framework we should also capture data for example on the frequency and level of our input on research projects. Information in the form of quantitative data was collected by our co-ordinator to provide descriptive statistics on panel membership, type of input into the research process, attendance at local and regional events, and staff educational activities.

Our members piloted the new panel member questionnaire and the researcher feedback questionnaire. We commented individually and collectively and our feedback was taken back to the joint chair and co-ordinator working party. Amendments to both questionnaires were collectively agreed.

Researchers who attend the Therapeutic and Palliative Care panel meetings are asked to complete their questionnaire after each meeting. The panel questionnaire is designed for annual feedback. In addition to the Trust questionnaire our panel also felt it important to introduce a comments slip to be completed at the end of each meeting. This was in response to some members finding it difficult to recall information over twelve months and wanted to be able to implement change more quickly. The comments slip asks panel members what aspects of the meeting did they find most and least rewarding, and how they feel they made a difference.

Quantitative metrics

The Panel has 14 members and has reviewed 36 research proposals between May 2014 and March 2017. A total of 33 researchers attended meetings or approached the panel remotely and a number requested feedback more than once. The main areas which the panel provides input is in the design of studies: recruitment of participants, developing grant applications, reviewing participant materials (for example, information sheets and consent forms), commenting on data collection tools (for example, questionnaires and interview topic guides) and outcome measures (Fig.  1 ).

Type of involvement (May 2014 to March 2017)

Other types of involvement include prioritising topics for future research and providing input at a strategic level, for example by reviewing and commenting on the Directorate research strategy. Changes to the research strategy included refocusing the strategy to more strongly reflect the primary aim of undertaking research for patient benefit, and including patient relevant outcome measures. The Directorate achieved Trust Academic Status in 2016. The review committee acknowledged clear evidence of the panel’s involvement. Other examples of involvement have included being a member of a project’s steering group, attending workshops, and disseminating their work at local, regional and national research and public engagement events. We have also presented at staff education and training events including a “Valuing patients in research” workshop, in which members of the panel presented the patient perspective. This educational event has since been adopted by the Trust Research Department and rolled out as part of their educational programme.

Qualitative data

Researchers were asked what their perceptions were of presenting to the panel before and after the meeting. Most researchers before attending were aware that seeking the opinions of members of the public was an integral and valuable part of the research process and were optimistic about potential insights that may not have occurred to them. One researcher felt “apprehensive about being asked questions I couldn’t answer!” After the meeting researchers stated they felt the comments were constructive and supportive: “It encouraged me to persevere with my application”.

Overall 83% of researchers stated they found the panels comments very useful and 77% made changes as a consequence of the feedback. Eighty four per cent stated they were very satisfied with their experience and 94% said they would definitely use the panel again. Examples of how researchers found the panel’s comments very useful included consideration of the burden to research participants in a study about developing speech recognition software for patients with paralysis on breathing support machines. The panel suggested shortening the length of the voice recordings as part of the software development given potential for participant fatigue, which was favourably received by the research ethics committee. Another example of added value was for a podiatry research study about peripheral arterial disease funded by the National Centre for Sport and Exercise Medicine. The panel suggested changes on how to make the recruitment poster more impactful and altering the way the participant information sheet was written. It was felt some of the language in the information sheet could be less threatening and might put people off participating in the study. The researchers took on board the panel’s advice, changed the participant information sheet and the study achieved its recruitment target. An example given from the minority of researchers who did not find it useful included not having anyone with direct experience of the condition of the topic of their research for a study about a triage system using photographic technology for wound management. Although no panel members had any personal experience one of our members who is carer for her husband who has experience, was able to offer a carer point of view and was subsequently invited to join the project’s steering group.

The most important question for us as panel members and one we ensured was included in both the panel and researcher questionnaires, was how the panel had made a difference. Table  1 summarises the themes and practical examples from the panel and researchers on how the panel has made a difference to the research.

As a panel we felt we enhanced research proposals by identifying issues from a user’s perspective that may not have occurred to researchers. Members felt they improved research studies by proposing suggestions to minimise selection bias of participants, encouraging a wider approach to intervention and outcome measures, and recommending customisation of the recruitment materials to help recruit and retain participants, and the use of more patient friendly language in information sheets. On a personal level some members of our panel felt their involvement had strengthened their knowledge of the research process and enabled them to continue to be part of a professional or academic community, which they had to prematurely withdraw from due to their condition or carer commitments. Other personal benefits included feeling they were giving something back to the National Health Service.

Suggestions on how the panel could be improved included: increasing the diversity of its membership from different social and cultural groups and to target recruitment with direct and indirect experience of different conditions and services to continue to reflect the breadth of patients which the Directorate provides services for. Researchers liked the range of ways they could contact the panel through the co-ordinator and requested if this could extend beyond the panel meeting. A request was made for longer discussion time for certain research items.

Adapting to changes in the context of the research environment

What we choose to say as panel members, and how well we fulfil our role, relates to our ability to know and learn about the organisation and the research context. This has been challenging as the “organisation” has changed around us. The composition of the Directorate’s services has evolved and we are now part of a larger Care Group in the Trust. This has had implications for our workload and the experience and abilities of panel members to remain useful and effective. Adaptation has been successfully achieved through the panel and the Directorate working together through regular consultation on the changing infrastructure and its likely significance for the skills and workload of the panel. Trust staff have adopted a shared information approach and thus fully engaging us in the process as well as research proposal content. For example, the Research Lead for the Directorate attends panel meetings and a regular item of the agenda is scheduled where members can discuss the implications of organisational change with the opportunity to discuss our ability and willingness to respond. The result for us has been heightened motivation and enthusiasm to adapt including our involvement in panel recruitment and adjusting the member mix. Thus all have worked to maintain our panel’s strong cross condition contribution.

Areas for further involvement

In our view much of the findings and metrics in this paper are due to our wide remit. We have been strongly encouraged to question and advise and this has had a significant impact on the measurement and improvement of outcomes likely to be more acceptable, meaningful and understandable for patients. However we also now see greater scope for our panel involvement in strengthening research at the input or research design stage particularly in respect to methodology, especially where this would contribute in the important areas of cost effectiveness and economic evaluation.

These may be more challenging and difficult areas for researchers to bring to the Panel but if consideration of cost and cost-effectiveness are not more frequently part of what researchers consider appropriate for panels - and we find seldom do at present - then we ourselves are not being used to maximum effectiveness. The panel can play a role in ensuring cost-effective approaches or treatments are not missed and are made available to patients. One of the co-authors of this paper has been influenced in this view through simultaneous membership of a PPI group for a study about adaptive design clinical trials and the impact on the economic evaluation of healthcare technologies [ 7 ]. This is also an example where members extend their involvement and create links with other patient panels and cross-fertilise ideas. In going forward we are keen to ensure that such future opportunities are not missed.

Setting the research agenda

The panel has been able to influence the research agenda through representation on the board of academics and senior clinicians and contribution to the Directorate’s Research Strategy 2015–2018. This helped it gain Academic Status. At an inter disciplinary level using a workshop format, we have provided a patient perspective in working with speech and language therapists in narrowing down competing priorities to a manageable number for their future research program. We envisage such strategic contributions developing and expanding. We have been invited to consider producing a panel led view on research and establishing panel generated ideas for a research agenda.

Impact on individuals and the group

The experience has been a very rewarding one in the main. There has been a sense of building working relationships and partnerships between Trust staff and ourselves that have been primarily positive and open. We have concentrated on giving ideas and sharing information as opposed to focusing on what is wrong or appearing to criticise. Without holding back on any concerns, we feel we have gained confidence in contributing constructively. Whilst striving to maintain objectivity, we have appreciated the insight we have been allowed into the challenges of the NHS environment. Finally there is gaining considerable satisfaction in being able to “give something back” through helping staff improve their proposals and secure approval of funding. These reflections are consistent with some of the practices of appreciative enquiry [ 8 ] in particular where stakeholders such as us are engaged to determine change by focusing on what is working well and doing more of it.

Future development and suggestions for improvement

We suggest there is much added value from investment in the panel through maintaining or increasing the contribution some members are able to make outside the panel. This is important for the transference of ideas and knowledge these contributions can create as well as forging mutually beneficial relationships. This includes dissemination through participation in public engagement events and more interaction with researchers and involvement in the research process itself including membership of steering groups for research trials or being a subject or volunteer in a study.

This evaluation has identified the importance attached to maintaining the appropriate gender, age and cultural balance within the panel as well as the diversity of the conditions, which the Directorate serves. We have recognised this as a future priority for us to assist with.

An illustration of the importance the Directorate attaches to our involvement is our representation on the academic board, including the Chair. Although now well established, we see this relationship very much developing in the future: we play a full part in all discussions at Board level and in turn report to the board as PPI progresses and is evaluated. Indeed it was as a result of this that at Board professorial level it was suggested that we write this paper and put it forward for publication as a PPI outcome and discussion document worth sharing with others.

Finally as we gain further experience we anticipate greater value added from patient panels working together to gain maximum benefit from our time commitment and the NHS resource investment in our support. The involvement of our members in other groups has opened up a network of local, regional and national links, which is a vital and reciprocal resource for improving patient focussed research and outcomes, and one which we will continue to foster.

Our involvement in the development of tools to evaluate our impact has helped ensure that measurements are meaningful from a service user perspective, and outcomes important to this group are included. In addition the results from the evaluation has improved our understanding of what aspects of our involvement work best across different contexts in which we operate, whether providing feedback to a researcher about the accessibility of their recruitment materials on a particular researcher project; to influencing the Directorate’s research agenda. It has also highlighted areas for improvement. This will help sharpen our focus on how we need to develop membership and activities to maximise future resource investment in our remit and activities. In addition we feel service user involvement in the provision of advice about cost and other methodological implications important to NHS decision making should be prioritised and that sharing our learning through greater networking with other groups is needed to maximise our own value, effectiveness and the resource justification for PPI.

Abbreviations

National Health Service

Patient and Public Involvement

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Acknowledgements

We would like to thank the members of the Sheffield Teaching Hospitals Therapeutics and Palliative Care Research Panel, Academic Research Lead Professor Sue Pownall and Research Development Officer Dr. Sally Fowler-Davis. We would also like to thank STH Clinical Research Office, and Laura Flight, NIHR Research Methods Fellow, University of Sheffield.

The Panel is funded by the Combined Community and Acute Care Group, Sheffield Teaching Hospitals NHS Foundation Trust. The Panel members volunteer their time freely.

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JG, is Chair of the Therapeutics and Palliative Care Directorate Patient Research Panel and Panel representative on the Academic Board for the Combined Community and Acute Care Group, Sheffield Teaching Hospitals NHS Foundation Trust.

SF, is a member of the Therapeutics and Palliative Care Directorate Patient Research Panel and Panel representative on the Academic Board for the Combined Community and Acute Care Group, Sheffield Teaching Hospitals NHS Foundation Trust.

SAE is Co-ordinator of the Therapeutics and Palliative Care Directorate Patient Research Panel and PhD Fellow at Sheffield Hallam University.

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Gordon, J., Franklin, S. & Eltringham, S.A. Service user reflections on the impact of involvement in research. Res Involv Engagem 4 , 11 (2018). https://doi.org/10.1186/s40900-018-0095-1

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Service user involvement: impact and participation: a survey of service user and staff perspectives

Affiliations.

• 1 Service User Research Enterprise (SURE), Institute of Psychiatry, Psychology and Neuroscience at King's College London, De Crespigny Park, London, SE5 8AF, UK. [email protected].
• 2 School of Applied Social Science, University of Brighton, Mayfield House, Falmer, East Sussex, BN1 9PH, UK. [email protected].
• 3 School of Applied Social Science, University of Brighton, Mayfield House, Falmer, East Sussex, BN1 9PH, UK. [email protected].
• 4 Department of Medicine, Imperial College, Claybrook Centre, Claybrook Road, , Hammersmith, London, W6 8LN, UK. [email protected].
• 5 Service User Research Enterprise (SURE), Institute of Psychiatry, Psychology and Neuroscience at King's College London, De Crespigny Park, London, SE5 8AF, UK. [email protected].
• PMID: 25344210
• PMCID: PMC4212124
• DOI: 10.1186/s12913-014-0491-7

Background: Over the last 20 years governments around the world have promoted user involvement in an effort to improve the quality of health services. Despite the growing emphasis placed on user involvement in England, there is a paucity of recent studies looking at how service users and professionals perceive the outcomes of user involvement policies. This study aimed to examine the overall levels of participation in service user involvement in mental health services among professionals and service users and ascertain their views on the impact of involvement activity on various areas of service delivery.

Methods: A cross-sectional survey of service users and providers within community mental health services. The sampling was carried out across three mental health Trusts, two serving people living in inner-city areas and a third covering a mixed rural/urban population. A questionnaire with closed and open ended questions was used to gather the responses of service users and frontline professionals. As a mixed methods study, the analysis consisted of both quantitative and qualitative approaches.

Results: Three hundred and two service users responded to the survey with a response rate of 48%. One hundred and forty three frontline mental health professionals, 26.8% of those approached submitted questionnaires. Almost half of service users (N=138, 45.7%,) and healthcare professionals (N=143, 55.9%) reported having been involved in some form of user involvement activity. Although there were some differences in the responses of service users and frontline professionals, both groups reported that service user involvement was having a positive impact.

Conclusions: The findings show that, within the three mental health trusts examined in this study, service user involvement has become widespread and is perceived by both staff and service users to be a good policy. The study had some important limitations. The questionnaire used was based on existing literature, however it was not subjected to psychometric testing. In addition, response rates were low, particularly among professionals. Despite the limitations, the findings are encouraging, offering important of insight into views and experiences of service users and healthcare staff. Further studies are needed to assess and investigate the topic on a national level.

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• Patient Participation / statistics & numerical data*
• Patient Satisfaction / statistics & numerical data*
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68 Service User Involvement in Research: Ethics and Values

Jan Wallcraft, University of Birmingham

• Published: 04 March 2015
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This chapter traces the development of service user involvement in research and user-controlled research, from its origins in the early 1990s to the present day where mental health researchers are expected to involve service users. It looks at why service users wanted to be involved in research and their issues of concern, including the effects of treatment, staff attitudes, and human rights. Values in research are linked to the epistemological underpinnings of research, and it is argued that service users’ ways of knowing based on experience are in conflict with mainstream research based on claims of objectivity and neutrality. Service user involvement at all levels from consultation to control is explored with examples. The benefits and problems of working in partnership are explored, and the chapter ends with an assessment of the impact of involvement in research and how it can lead to change.

Introduction: Service Users’ Input to Research in the Twentieth Century

Mental health service user involvement in research (as researchers rather than merely subjects of research) in the UK has been evident for at least 20–25 years, when the service user/survivor movement began to gain momentum with regional and national networks ( Wallcraft and Nettle 2009 ). Beresford (2009) makes a clear distinction between “user-controlled research” and “user involvement in research” (p. 181) and this distinction will be adopted in this chapter.

Although people diagnosed as mentally ill have from time to time spoken out and even set up groups from the seventeenth century onwards ( Wallcraft et al. 2003 ), mental health service user involvement in research is a much more recent phenomenon. As late as the 1980s and early 1990s service users were rarely invited to get involved in mental health research, except as research subjects ( Campbell et al. 1993 ). Some, however, began to do small-scale research, often unpublished or self-published, including small surveys and collections of narratives, and information gathering within service user groups in order to challenge existing forms of knowledge about mental health ( Beresford and Wallcraft 1997 ; Wallcraft 1998 ; Wallcraft and Nettle 2009 ). Some, such as the author, began to carry out mental health research as part of courses of formal study ( Wallcraft 2009 ), or began to gather information and service users’ views as part of campaigning work to develop a collective voice and presence for service users, and to influence policy and service provision ( Pembroke 1994 ; UKAN 1996 ). At this stage, the work was small scale and usually unfunded, with little quality control from academic institutions. Whatever the faults from an academic perspective, the early research often made an impact at the level of consciousness raising among fellow service users and within the voluntary sector because it was addressing problems of importance for service users in an idiom they could relate to.

The early research work covered a range of concerns, such as experiences of mental health crisis, medication and ECT, eating disorders, and self-harm. It built on themes which had been explored in writings by service users since the 1970s in the USA and the UK. For example, Frank (1978) , a survivor of multiple ECT treatments, collected and self-published accounts of shock treatments through the ages, while Chamberlin (1978) wrote about her own experience and of consciousness-raising mental health self-help groups and alternative crisis provision. More writings began to emerge as former patients began to build communities of shared interest which gave them the confidence to participate in society and express their views in ways that would not have been possible in the earlier half of the last century. According to Rogers and Pilgrim (1991) , these groups and networks represented a new social movement (unlike the old social movements based on social class and economic role). This new movement was more about shared identity and experience, and the voicing of painful, formerly shameful, and hidden experiences.

Harper and Speed (2012) characterize the movement as a rights-based struggle for an alternative to the dominant biomedical discourse which kept service users and survivors from the production of knowledge: “Historically, the survivor movement represented an attempt to transform medical dominance. It sought to offer a counter-hegemonic strategy, based on non-medical understandings of emotional distress, informed by social justice and equality” (p. 18). The collective movement helped former patients to share the struggle to be recognized and to fight back against oppression, isolation, and exclusion ( Campbell 1996 , 1999 ): “Legends of oppression met and overcome are important parts of the service user/survivor culture” ( Campbell 1999 , p. 198).

Arising from these communities of shared interest, service users in the USA and UK produced, or helped to produce, collections of narratives ( Sutherland 1976 ; McNeill et al. 1986 ; Susko 1991 ; Read and Reynolds 1996 ; Shimrat 1997 ; Leibrich 1999 ) and books based on personal journeys or collections of shared experiences ( Sutherland 1976 ; McNeill et al. 1986 ; O’Hagan 1993 ; Pembroke 1994 , 2005 ).

Narrative can be a form of research as well as a form of consciousness raising for the service user/survivor movement. The act of eliciting people’s stories can be of value to the person concerned as well as to the researcher and the wider community: “The stigma of mental illness is often cited as one of the most difficult problems that psychiatric patients and former patients have to contend with in their lives … Encouraging the telling and dissemination of the life-stories of mental patients could be an important means of changing this” ( Wallcraft 2002 , p. 106).

Kalathil (2011) found that the process of carrying out narrative research with black women about what helps their recovery from mental distress was in itself seen as helping their recovery:

It is significant that many women found the very act of narrating their stories enabling and considered it part of their recovery process. Indeed, for some, this was the first time they were asked to tell their stories and be given a forum and framework within which to develop and tell their story. This in itself, we believe, is a significant achievement of this project. ( Kalathil 2011 , p. 76)

These stories offer a contrast to the case study approach to recording patients’ histories, with its focus on disease symptoms, lacking social or personal life context. Narrative can give greater understanding of people’s needs and what helps in practice ( Wallcraft 2007 ). The following is from a piece by O’Hagan (2009) , in which she intersperses her own notes made during a hospital admission with her case notes later obtained:

Today I wanted to die. Everything was hurting. My body was screaming. I saw the doctor. I said nothing. Now I feel terrible. Nothing seems good and nothing good seems possible… Flat, lacking motivation. Sleep and appetite good. Discussed aetiology. Cont. LiCarb 250 mg qid. Levels next time. ( O’Hagan 2009 , p. 200)

This small extract shows a complete divergence of issues of concern and value between the patient and doctor; one related to subjective feelings and fears about the future, the other to physical manifestations and levels of medication. There is no communication between the two.

The appearance, from the late 1970s onwards, of growing numbers of individual and collected personal stories began to give a voice to people who were marginalized in society and excluded from mainstream mental health research that was written in the language of psychopathology, clinical psychology, or social psychology.

The first types of user-led research were social surveys: for example, In Pursuit of Wellness in the USA ( Campbell 1989 ), in which 500 service users living in the community were asked about the quality of their lives, and in the UK ( UKAN 1996 ) a national member survey that collected and publicized experiences and views about ECT. Work of this type was carried out entirely in pursuit of values and principles, in the absence of substantial funding or encouragement, to advance the largely silenced perspectives of current or former psychiatric patients.

This early period of unfunded voluntary research and student project work by service users/survivors and voluntary sector user-led initiatives resulted in an exploration of issues of concern for service users which psychiatric or psychosocial researchers were not taking into account. These include the lived experience of receiving services; the sense of disempowerment and often outrage at the treatment people were receiving; the experience of often hurtful attitudes on the part of staff; the lack of concern shown by professionals about the adverse effects of treatment; the lack of choice and information given; and the feelings of having been misrecognized, misheard, and misconstrued which stayed with people often for many years after their first encounters with psychiatric treatment.

In addition to treatment issues, people wanted to recount their life stories before and after diagnosis ( Susko 1991 ; Read and Reynolds 1996 ; Curtis et al. 2000 ). Some people pointed out that their life stories had not been elicited by professionals, and had not been taken into account at any point during diagnosis and treatment—yet these histories often contained experiences of trauma or abuse and mistreatment in childhood and early adulthood which they felt had led to their mental health problems ( McNeill et al. 1986 ).

Additionally, there were experiences more specific to certain groups, such as women, working-class women in particular, black women, black men, Asian people, African and African-Caribbean people, and gay people ( Patel and Fatimilehin 1999 ; Chambers 2009 ; Carr 2013 ). These specific issues seemed to have no fit with diagnostic categories except in a negative way, in that some groups seemed to attract certain particularly unpopular diagnoses with greater frequency ( Fernando 1999 ). Clinical and academic researchers and research bodies appeared to see the diversity of populations as not especially relevant when it came to the scientific logic of psychiatric diagnosis, where the point was to create categories which remained true irrespective of personal characteristics or demographic categories.

Emergence of Service-User-Led Research in the Voluntary Sector

Sweeney (2013) lists watershed moments for the emerging work of service users as researchers when this work was recognized, supported, and funded by nonprofit research bodies. One such key moment was the publication of Have We Got Views for You , a service user evaluation of mental health case management ( Beeforth et al. 1994 ) which directly challenged the routine omission of service user voices from research: “User researchers should be used more widely in the evaluation of services. User researchers bring a new and different perspective, which generates new ideas and constructs and enhances the quality of the whole research process” ( Beeforth et al. 1994 , p. 16). Sweeney (2013) also cites as part of this emergence into the mainstream the work of the User Focused Monitoring team and the Strategies for Living user-led research team ( Faulkner and Layzell 2000 ; Kotecha et al. 2007 ) (at the Sainsbury Centre for Mental Health and the Mental Health Foundation respectively).

The main ethical approach emerging from service users/survivors was one of recognition of the rights and humanity of patients as people, as individuals with particular distinctive life experiences, and also as members of groups and subgroups with a cultural history and shared issues ( Campbell 1999 ). These personal and collective histories were in sharp contrast to the objectivized psychiatric histories contained in people’s case notes.

Different Cultures/Groups with Different Experiences—Are Some Groups “Hard to Reach”?

Initially, the service user/survivor movement in the UK was predominantly white, as inherent racism and unawareness of the extent of racism was as endemic among white service users as it was among the wider society. Wallcraft et al. (2003) , in researching the service user movement, found that most black and minority ethnic (BME) service users they spoke to did not see themselves as belonging to the movement.

Members of the largely white service user movement were slow to recognize that there were other groups who were even more oppressed, suffering as they did not only the social mistrust accruing to being a psychiatric patient but also additional layers of social marginalization as members of ethnic, racial, or religious minorities ( Chambers 2009 ; Essien 2009 ; Trivedi 2009 ): “BME women are physically much more visible than women in white communities, and those with mental health problems suffer double discrimination … when the mental health needs of black people are researched, it usually means black men, and when the mental health of women is researched, it generally means white women” ( Essien 2009 , p. 67–68).

There are, in addition, people with a combination of mental health and physical, sensory, or learning disabilities, or who have additional issues such as problems with alcohol or street drugs ( Staddon 2013 ), and those marginalized because of differences from mainstream heterosexual culture ( Carr 2013 ). These additional complexities of identity, added to the differences of gender, age, and social class meant that those who did form a social movement and begin to insist on involvement in the generation and use of knowledge about mental health could not represent all, or even the majority of patients and service users: “there is no ‘we’ of the service user/survivor population; that is, except where we have all experienced mental distress and dominant mental health discourses” ( Armes 2009 , p. 142).

The description “hard to reach,” however, is often seen to be insulting to those who feel little attempt has been made to do the reaching in the first place; that barriers have instead been placed in their way to prevent them having a voice. Kalathil (2013) argues that the idea of “hard to reach” places the problem within the groups rather than recognizing how they have been marginalized by policies and practices that exclude them: “The problem with using a term like ‘hard to reach’ to define these groups is that it assumes homogeneity within disparate groups and places the problem within the group rather than the approaches used to enable engagement” ( Kalathil 2013 , p. 123).

Kalathil (2013) , citing other work as well as her own, adds that these communities have been called “obstinate, disadvantaged, illiterate, information-poor and chronically uninformed” or, specifically with regard to mental health user involvement, “difficult and separatist” (p. 123). She concludes that there are no communities that are by definition hard to reach, but that there are “practices, prejudices, belief systems and experiences that collude to create the exclusion of some groups from involvement initiatives” ( Kalathil 2013 , p. 131). She also argues (p. 125) that involvement of people from racialized groups needs to take into account the “negative and difficult experiences that people have been through” and not expect all discussions to be positive and collaborative (as set out in Department of Health statements).

Ways of Knowing—Competing Epistemologies in Mental Health Research

The positivist philosophical approach to knowledge is based on a belief that reality can be observed and described objectively. Researchers try to isolate the phenomena being observed—for instance, testing drugs with specified active ingredients and observing their effect on specific disease symptoms. They choose methods such as randomized controlled trials (RCTs) and systematic reviews, which are claimed to take an unbiased approach and which other researchers could replicate with similar results.

Most mental health research is based on this philosophic approach. Although not all mental health research uses these methods, it is the approach which has traditionally been most highly valued, and regarded as producing the most reliable evidence. It therefore receives the greatest share of funding and credence. This approach has also been termed the “biomedical” model of mental health ( Wallcraft 2007 , p. 342). Even before the twenty-first century, emphasis on “evidence-based medicine” through the National Institute for Clinical Excellence (NICE) and government funding of research, psychiatric consultants and teaching hospitals using positivist or biomedical principles of research held most of the power and resources in defining knowledge of the field.

Beresford and Boxall (2013) argue that the whole area of mental health suffers a lack of credibility compared to physical medicine: “each of the key professions involved in mental health—psychiatry, nursing, social work, occupational therapy, and psychology—faces its own difficulties and problems of credibility and authority. None carries with it the strength and authority invested in professions like physical medicine or the law” ( Beresford and Boxall 2013 , p. 80). They argue that this makes professionals more wary of the development of service user knowledge which may “further undermine their academic or ‘expert’ status” (p. 80).

So long as RCTs and systematic reviews of RCTs are the predominant type of research to be funded and regarded as the highest standard of evidence, service users can have little influence on research: “positivist researchers seek one primary outcome, leaving out other possible effects of treatment. There is no opportunity for personal testimony” ( Wallcraft 2013 . p. 200). Thomas and Bracken (2004) argue that positivism “is simply unable to deal with complexity of social and cultural environments” (p. 363).

The French philosopher Foucault (1972) developed an epistemological approach that he termed “the archaeology of knowledge” for unearthing the origins of scientific discourses. This enables a critical re-evaluation of their basic assumptions. Foucault used the development of the knowledge field of “psychopathology” (the biomedical or positivist approach to mental ill health) to demonstrate his “archaeology”: “[Foucault] argues that psychopathology cannot be said to exist as an objective entity independent of the particular interweaving of social, industrial, cultural, religious, legal, professional and political relationships in which the discourse historically emerged and was developed” ( Wallcraft 2002 , p. 18).

Foucault’s approach to discourse enables a range of critiques to the assumptions underpinning positivist, biomedical research. In the twenty-first century, other forms of research are emerging more strongly, some of which adopt participatory and emancipatory principles that are more enabling of service user involvement: “Certainly, participatory methods can go beyond the statistics that record and analyse numbers to include meaningful interactions with those living with a psychiatric diagnosis when we listen to the voices of engaged and involved participants: productive, thinking, feeling, creating, honoring others’ values and choices, and respectfully listening as each person understands his/her own voice” ( Campbell 2013 , p. 131). These forms of research have been more likely to be found in social research and anthropology, but now there are more examples happening in mainstream academic and clinical research such as the Northumbria University care coordination study ( Jones and Hughes 2011 ).

Armes (2009) uses the Foucauldian epistemological approach, arguing that mental health knowledge is relative since it is “framed in language and imagery that does not correctly describe reality” (p. 143). He quotes Foucault’s writings on how during the Enlightenment period in the eighteenth century, a process began where the high social value placed on “reason” led to mad people being treated as the embodiment of “unreason.”

  Webb (2006b) also talks about the need to reclaim language, and about the role of service user academics in challenging traditional discourses of madness, arguing that:

Mad Culture is the expression of a community of people, from all around the world, who have experienced what is often called “madness.” Although madness is usually a pejorative term, Mad Culture reclaims the language of madness to give voice to the subjective experience of it as it is lived and in our own words … Mad Culture asserts the legitimacy of madness, with its own distinct voice, as part of the diversity of what it is to be human … Despite this, and unlike … other social movements, Mad Culture is only just beginning to develop an academic discourse as a vibrant and necessary part of an emerging culture that will no longer remain invisible and silent. ( Webb 2006b , pp. 9–10)

Different Values in Research

The different perspectives of service users and professionals are an indication of different value bases, according to Wallcraft (2007) : “The key values for service user/survivor-led research include a commitment to change, expertise based on personal experience, countering stigma, redressing power imbalances, and desired outcomes such as self-management and recovery of a satisfying life” ( Wallcraft 2007 , p. 349).

Some research led by service users has specifically asked the questions about values in research, including this study by Turner and Beresford (2005) :

We asked people whether they thought that there are particular values and principles which underlie user controlled research. Participants clearly thought that there are. The values and principles which they identified seem to be grounded in those which guide the disabled people’s and service users’ movements more generally … These values and principles include ones of: empowerment; emancipation; participation; equality; antidiscrimination. ( Turner and Beresford 2005 , p. 27)

However well intentioned clinical researchers may be, it is unlikely that they will fully share this set of values and outcomes. According to Turner and Beresford (2005) : “The continued dominance of medically based research associated with positivist values of ‘scientific rigour’ and ‘neutrality,’ are seen by service users to lead to the devaluing of user controlled research, with its emphasis on subjectivity, personal experience and allegiance to disadvantaged groups’ ” (p. ix).

Experience-Based Knowledge versus “Objective” Knowledge

A key aspect of service-user-controlled research and the efforts service users make to be meaningfully involved in research relates to debates about ways of knowing and making meaning. “It formalises the desire of users and survivors to generate our own knowledge about our experiences” ( Sweeney 2013 , p. 1).

  Beresford and Boxall (2013) argue that the role of psychiatric professionals as “knowers” of mental health issues, madness and distress seems to have been conditional on the exclusion of the direct knowledge of service users themselves (p. 80): “One way in which this continues is on the basis of the supposed inferior methodological value of survivor research because it is not based on positivist research values” ( Beresford and Boxall 2013 , p. 80).

A psychiatrist of 20 years standing, Middleton (2013) argues that the idea of mental health difficulties being framed as medical illnesses is historically recent, but has become universally accepted and “defines participants’ roles and power relations in ways that influence their expectations of research” (p. 11). He updates the discourse approach pioneered by Foucault, arguing that the current acceptance that “madness is a collection of illnesses to be treated by professionals as in any other field of medical endeavour has become a dominant public discourse” (p. 13). Using a discourse approach to show the metaphorical, rather than the physically existing, nature of the concepts underpinning psychopathology, allows the opening up of a critical approach to understanding the related power dynamics as constructed but not objectively based.

This approach allows the current power divide between service users and service providers to be seen as resulting from a long-established discourse in which, despite the fact that “madness” and other terms do not have fixed, objective meanings, they are used to “describe and justify the social exclusion and confinement of the disturbing, the threatening or the merely inconvenient” ( Middleton 2013 , p. 12). Middleton updates Foucault by using “sick role” theory to extend the metaphor of “illness” into present time, showing how poorly mental health difficulties fit into the “classic sick role framework” (p. 21), as they are not stable entities which can be easily understood and which appear similarly to different observers. Service user researchers, he argues, are constrained by “sick role” assumptions which infantilize the value of their knowledge alongside “the ‘grown-up’ world of science and clinical trials” (p. 22). He labels this division as an “epistemological fallacy” and argues that all knowledge needs to be co-constructed.

Turner and Beresford (2005) argue that medical dominance encourages the continued reliance on:

a traditional positivist approach to research, based on the valuing of criteria of “neutrality,” “objectivity” and “distance.” This has been associated with an emphasis on quantitative research approaches, particularly randomised controlled trials (RCTs), which have come to be seen as the “gold standard” of research. Emancipatory and user controlled research approaches, with their explicit acknowledgement of subjectivity and bias and their frequent reliance on qualitative research methods tend not to be strongly valued in this context. ( Turner and Beresford 2005 , p. 65)

Sweeney (2013) points out that even in sociological research, which aims to be more qualitative, for example the participant observation of William Foot Whyte and Erving Goffman, the “voices of the marginalized” were only represented “through the lens of detached academic interpretation” (p. 2); in medical sociology, a researcher argued that “lay expertise” was an oxymoron since lay people only had personal experience but no skill in diagnosis or management of illness (pp. 2–3).

Sweeney further argues that experiential knowledge is the “bedrock of survivor research” (p. 4), and that instead of rejecting lay expertise we need to “seek ways of including range and diversity, and of synthesizing individual experiences into collective understandings of commonalities and differences” (p. 5). In this way, she asserts the role of survivor research in “generating our own knowledge” ( Sweeney 2013 , p. 6).

Standpoint theorists argue for basing knowledge and thinking about knowledge in the lives and thoughts of marginalized people. They counter the claims that truly scientific knowledge is only that which uses empirical, objective methods to separate out positive, measurable facts about reality.

Feminist thinkers such as Harding (2002) argue that all knowledge is situated according to a standpoint, even if this standpoint is not openly acknowledged, and that the standpoint of women has been systematically excluded from knowledge production. She argues that openness about standpoints leads to a stronger form of objective knowledge:

Empiricism tries to purify science … by adherence to what it takes to be rigorous methods for the testing of hypotheses … Thought that begins from the lives of the oppressed has no chance to get its critical questions voiced or heard within such an empiricist conception of the way to produce knowledge … Starting off research from women’s lives will generate less partial and distorted accounts not only of women’s lives but also of men’s lives and of the whole social order. ( Harding 2002 , pp. 55–56)

Beresford and Boxall (2013) suggest that: “A mental health service user/survivor standpoint could bring together mental health service users (whatever the aetiology of their accredited or perceived ‘mental illness’ on the basis that their lives have been subjected to … similar ‘solutions’ ” (pp. 77–78). They further argue that: “Adopting standpoint theorists’ criteria for assessing knowledge would indicate that knowledges produced from a service user standpoint should be assessed according to their challenging of injustice, their creation of cultures of resistance, and their transformative potential in the lives of mental health service users” ( Beresford and Boxall 2013 , p. 78).

Armes argues that service users need to reclaim their capacity to reason: “One of the first tasks of a service user/survivor standpoint must be to challenge the ‘reason/unreason’ dichotomy” ( Armes 2009 , p. 145). He argues that service users do apply reason and are aware of chains of reason that lead to loss of hope, for instance. Even “psychotic” experience of oneness with the universe can imply a reasonable belief in spiritual powers at work: “Employing a service-user/survivor standpoint can help to redefine the term ‘madness’ ” ( Armes 2009 , p. 146).

Straughan (2009) is a former service user who took the path of joining the elite circle by gaining a PhD in order to gain the equal status needed to influence change. She argues that research quality is at least as important as standpoint: “Whether it is research from a user perspective or not, research must stand by the quality of the work, not by the quality or meaning of the standpoint alone” ( Straughan 2009 , p. 107). However, Straughan (2009) is concerned that service user research can become marginalized on the basis of the standpoint, if this is the aspect emphasized, rather than by the competence and quality of the work, and proposes that people who do this work should be termed “researcher from a service user standpoint” or simply “researcher” (pp. 116–117).

Survivor researchers such as Russo (2012) argue that survivor-led research opens up the debate about whose beliefs and interests research is serving:

Survivor-controlled research acknowledges the fact that we are all part of the social reality we are exploring and that who we are will always affect our interactions, including those in the research process. The identities of researchers, their knowledge, experiences and beliefs have an effect on all research, not just survivor-controlled projects. However survivor research is transparent about its researchers’ standpoints and willing to work with them instead of pretending that these are neutralized as soon as academic degrees are conferred. Instead of espousing a notion of “scientific distance,” it promotes closeness to the subject as beneficial to the quality of the research. ( Russo 2012 )

Gillard et al. (2013) describe a fully collaborative process, where recognition of the differing standpoints of the university research lead, the clinical research, and the service user researcher were negotiated during the process of a research study, through the willingness of the academic and the clinician to engage in dialogue and step back from controlling the outcomes: “It was only through strenuous dialogue within the team, and through explicit acknowledgement of ‘where we were coming from’ in offering our interpretations, that we managed to move beyond those epistemological tensions and co-produce our analysis” ( Gillard et al. 2013 , p. 65). They argue that through this process of “self-conscious reflection on who we were and our commitment to discursive research” (p. 66), they were able to look critically at the diagnosis of personality disorder, and through a “moral discourse” to co-produce “a new narrative that captures the lived experience of personality disorders in the context of treatment practice and recovery policy in the UK” ( Gillard et al. 2013 , p. 66).

David Webb ( Webb 2006a , 2006b ) broke new ground in experience-based research, writing his PhD thesis as two volumes, one being “Thinking about suicide,” which he terms a “thick phenomenological description” of his first-person experiences of suicidality, and the other being the exegesis or commentary, which “explores and contextualises the narrative within an academic discourse.” Webb describes his method: “First-person research, which is what this thesis represents, is generally not recognised by mainstream suicidology as ‘real’ research, which is the main reason that this thesis must speak to suicidology from outside, rather than from within, the discipline” ( Webb 2006b , p. 5).

Carr (2013) terms research based on personal accounts of experience “autoethnography,” and attests to the power of “personal accounts and narrative artefacts” in contributing to the way in which lesbian, gay, and bisexual (LGB) people see themselves personally and politically. She states however, that it is still rare to find autobiographical accounts by LGB people with mental health problems.

She argues that although autoethnography has been criticized as potentially at risk of self-indulgence and narcissism, it can also be rigorous, theoretical, and analytical. She concludes that: “The methodological principles and framework of autoethnography could offer an important means of capturing individual narratives and collective knowledge and be a useful form of research for service user researchers wanting to challenge ‘oppressive’ structures” ( Carr 2013 , p. 146).

Service Users in Research: From “User Involvement” to “User Control”

In recent years, organizations such as the Mental Health Research Network ( Staley 2013 ) have taken on government pressures to demonstrate involvement and responded to the growing interest in research among service user groups, developing sets of principles and guidance for involvement of service users, carers, and the public in research ( Hanley et al. 2004 ; Pollard and Evans 2013 ). There is general agreement about the importance of involving people from the start, at all levels, and reducing power differentials. In addition, there are the practical issues of funding and recompensing people for their involvement ( Schrank and Wallcraft 2009 ).

However, many research projects fail to involve service users from an early stage of development, fail to build in a sufficient budget or suitable payment and support systems to enable involvement to work, and fail to take on board the suggestions and criticisms of service users. According to an evaluation of involvement in the work of the Mental Health Research Network:

The majority of researchers (40%) are involving service users as members of their trial steering committee/project steering group. There is a great deal of variation in how well this is working. In some projects, service users have had a major impact for example on trial design and recruitment processes. In others their impact has been minimal. Some researchers report finding it difficult to enable service users to contribute to committee meetings … Just under 20% of researchers consult service users at the design stage. ( Staley 2013 , p. 5)

For effective involvement, where service users’ values are incorporated into research, guidance suggests the importance of involving service users at the outset. McGowan et al. (2009) summarize service user research concerns from literature as including involvement in care treatment programs, and in discrimination and rights-related issues. A consultation with service users and carers on their research priorities ( Samele et al. 2007 ) added further issues including GPs and primary care, prevention and mental health promotion, non-medication-based interventions, services for people in crisis and person-centered care planning. On the basis of this research they recommended that “user-centred outcome measures need to be encouraged in all trials of mental health interventions” (p. 23). Training for service users in skills they need in order to be able to take part in research, alongside experienced researchers as equals, is also a feature of good practice ( Schrank and Wallcraft 2009 ). This took place in a research program on care coordination based at Northumbria University ( Jones and Hughes 2011 ) but projects of this nature are still a rarity.

Levels of Involvement

Sweeney and Morgan (2009) identify four levels of involvement in research: consultation, contribution, collaboration , and control . Each of these levels has value, and may be used at different stages of a research process, or can be suitable ways to carry out a particular piece of work.

Consultation with service users at an early stage of thinking about research can help to establish priorities. Minogue (2009) describes consultation as “a means of bringing the service user perspective into the research process” (p. 159) but argues that it should be seen as part of a continuum of involvement, not as a sole method. She adds that it is important to evaluate consultation processes: “Lack of evaluation of the process and impact of involvement and absense of recorded outcomes can be a significant gap in terms of measuring the value of consultation” ( Minogue 2009 , p. 164).

With regard to contribution , Sweeney and Morgan (2009) say that the most obvious example of the “contribution” level is when a service user is employed as a member of a research team and can draw on their personal experiences to influence and inform the work (p. 29).

Collaborative research, as Rose (2009) argues, can be difficult to do well, since power differentials become apparent between service users and academics or professionals in the organizations they work with: “It will usually be the case that the collaboration is unequal and not a true partnership” ( Rose 2009 , p. 177). One way in which unequal collaboration can happen, according to Rose, co-director of SURE (Service User Research Enterprise) at the Institute of Psychiatry, is that service users may be involved in qualitative, rather than quantitative, aspects of research, when it is the quantitative aspects that receive the higher status. However, she reports on a successful collaboration to carry out a systematic review of ECT at SURE (see below, “ Working Together as Equals ”).

In terms of control , service-user-controlled research is described by Turner and Beresford (2005) , Beresford (2009) , and Faulkner (2010) . Beresford (2009) defines user-controlled research as that which is actively controlled by service users and is accessible to them, and that is committed to trying to make changes in line with service users’ rights and needs, i.e. it is generally action-oriented. This form of research is highly valued by service users but is less frequent than service user involvement in research, and levels of actual control may be disputed, for instance, if a user-led research project is situated within a non-user-led organization, such as the Strategies for Living research project ( Faulkner and Layzell 2000 ). This research was funded and run by the Mental Health Foundation (a nongovernmental organization) The research was carried out by service user researchers and supervised by a steering group made up entirely of service users. But the researchers were employees of the organization, which was not user led. While day-to-day responsibility for the project rested with the steering group and the researchers, overall responsibility for the finance and management remained with the organization.

Benefits service users express about user-led research ( Turner and Beresford 2005 ) include its usefulness, since it starts from service users’ shared experiences; the potential to identify new areas that matter to service users; the generation of trust among potential research participants; and the actual benefits that research participants may experience from taking part in research where the relationships are empowering and equal. Faulkner (2010) studied seven user-led research projects (not all mental health), finding that “user-controlled research often arises from within groups of people frustrated by traditional research that overlooks or excludes them” (p. 42).

Examples of user-controlled research looking at issues ignored by the mainstream include the work of Read (2009) , who examined the experience of coming off psychiatric drugs. This work was based on a user-led project Read had previously carried out for Mind ( Read 2005 ). The research was founded on service users’ expressed concerns about the effects of psychiatric medication and the lack of medical support and advice on withdrawal or reduction of medication. The results showed that some people do successfully withdraw from medication with or without medical support, and that it is important that decision-making about prescribing, changing, reducing or withdrawing medication “should be made in a spirit of cautious experimentation, open-mindedness and collaboration, with the service user or patient being respected as the person whose wishes are ultimately paramount” ( Read 2009 , p. 166).

Working Together as Equals

Pollard and Evans (2013) refer to some of the problematic aspects of partnerships between service users and professionals. They suggest that while many articles about public involvement in research are framed in positive terms, this conceals many of the real-life difficulties, “We have much less concrete information about researchers who are sceptical or hostile towards PPI [patient and public involvement] in research” (p. 41). They argue that although it is relatively easy to involve service users in participatory research and qualitative research, it is less straightforward to do so in more positivist research. They refer to the well-reported dangers of power imbalances in research leading to “tokenistic PPI,” but add that another difficulty can be the emotional work required of researchers having to manage the expectations and subsequent disappointment of service user researchers at the slowness of the research process, and the “often little likelihood that findings from a project will be implemented in a service area” ( Pollard and Evans 2013 , p. 44).

According to Staley (2013) , in a review of involvement of service users in the Mental Health Research Network, the challenges reported by researchers seeking to involve service users include: a lack of time and resources, a lack of know-how, problems of recruiting service users and maintaining their involvement, and problems of managing the employment of service user researchers (e.g., supporting their careers after the project ends) ( Staley 2013 , p. 6). Pollard and Evans (2013) also refer to a sense of “moral imperative” felt by researchers to be involved in future development of service users who have taken part in research (p. 48).

However, there are a growing number of case studies of various types of research where partnership between service users and professional researchers from clinical or academic backgrounds has produced good results and useful learning about joint working in research.

Castillo (2010) describes a participatory and emancipatory research project undertaken to develop and evaluate a service (the Haven) for people diagnosed with personality disorders. The Haven’s participatory ethos was built on earlier work between Castillo (2003) and local service users to identify the needs of people labeled as having personality disorders. The service incorporated the following ethos, as described by Castillo:

Not only had The Haven been created around service users’ views, they would also continue to guide its development. Early abusive experiences represent a violation of boundaries and loss of power. Being party to decisions, and in control of developments, means that someone who has lost power in the past is not subject to and dependent on authority figures in order to progress. ( Castillo 2010 , p. 13)

The research group of service users who were themselves using the Haven service worked in partnership with Castillo, the project lead, for five years, and the process is set out in a series of research diaries in an appendix. The 10 people who were at the final meeting had been there from the outset, and the following quotations suggest the fundamental integration between the research process, the outcomes for the project’s clients, and the experiences of the research team:

Becky: It’s been a learning curve. It’s about believing in yourself and having other people believe in you. It’s not just a learning curve about the research project, it’s about how we’ve all changed and grown. Heather L: I enjoyed every minute of it. It was about being understood and helping us to understand each other. I also felt it helped me to remember my BA and academic work. It helped me to think, but it has also helped me to stop dwelling on bad things … Helen P: If all the clients here were still stuck where they were five years ago, how awful would that be … What it’s done for me personally, it’s got me into reading more academic literature. That can be quite a struggle when your head’s like a washing machine, quite a test. Jeff: It was a very productive time. I felt my opinions were really appreciated and that it was a very good project to have been part of, and to have been heard. It was all about self-worth. ( Castillo 2010 , Appendix II, pp. 30–31)

At the other end of the research spectrum Rose et al. (2003) and Fleischmann (2009) report on a partnership between service user researchers and traditional clinical researchers at the Institute of Psychiatry to carry out user-led systematic reviews, beginning with one on ECT. Service user researchers at SURE with lived experience of ECT led the work, and grey literature on service users’ experiences and non-RCT papers were included in the review. A psychologist and a psychiatrist who were not service users contributed their areas of expertise on memory and legal issues. The resulting study, despite its difference from other systematic reviews, which are based mainly on peer-reviewed RCT trials, was accepted as credible by NICE and included in its work to develop new guidelines on ECT. Fleischmann (2009) argues that “it is vital that users and survivors do get involved in systematic reviews as an important and powerful way of grounding reviews in lived experience” (p. 96). Beresford and Boxall (2013) cite this work as evidence that service user researchers have developed new ways of doing quantitative research more consistent with the aims and values of user-controlled research, one which “questions the assumed ‘neutrality’ of traditional RCTs on the basis that their outcome measures are defined by clinicians” (p. 76).

Conclusions

What is the impact of service user involvement in research? There are few studies that have specifically looked at the impact of service user involvement, rather than merely establishing that involvement in research has taken place, as is pointed out by McLaughlin (2010) , who argues that future studies need to look at the process of involvement as well as the impact:

Too often, successful service user involvement has been identified solely in terms of whether service users have contributed to the completion of a research project. This neglects both a focus on outcomes and the types of knowledge claims being made. There is a pressing need for a greater number of outcome studies and a more nuanced approach to the process, identifying where the process has been empowering and participatory and when it has not. ( McLaughlin 2010 , pp. 1605–1606)

Some studies have looked at the process and identified ways in which service users contribute to research, as in a study of service-user-led research ( Turner and Beresford 2005 ) which quoted participants as pointing out how service users draw attention to issues which concern them but which have not been sufficiently researched before:

[a participant] highlighted how user controlled research had already opened up new areas for development. She said: “You get a fresh perspective” (Discussion group C) and pointed to the whole field of alternative approaches, including spirituality and spiritual healing, in which user controlled research has encouraged new interest and developments. Participants pointed to how the NHS has been adopting alternative and complementary approaches to health in the light of the evidence provided by service users. ( Turner and Beresford 2005 , p. 62)

An evaluation of service user involvement (in a wider study which aimed to develop principles and indicators of successful service user involvement in research) found that the process was greatly helped by repeated sessions for joint reflection: “The sessions facilitated the development of trust and commitment as well as provided an opportunity to capture details of the impact of service user researcher involvement that might otherwise have been lost. The structure also offered a forum for mutual learning and the sharing of knowledge” ( Barber et al. 2011 , p. 610).

Beresford (2009) argues that academic research is assessed for its impact mainly in terms of academic citations, and user involvement in research is assessed for its improvement of the quality and outcomes of the research. He argues that these criteria for impact are too narrow, and assessment should also take in the effects of research on policy and on the service users involved. Beresford (2009) further argues that the impact of user-controlled research should be assessed in terms of its own values, including its influence on planning, policy and practice.

Service user involvement in research, and service-user-controlled research is attempting to do, and sometimes succeeding in doing, far more than adding value to existing research. It is challenging the established forms of knowledge and the means of producing knowledge in the field of mental health. It is questioning the underlying concepts, values, and power relationships underpinning knowledge and knowledge creation:

While survivor research is not based on an equivalent of the social model of disability, it does generally challenge medicalised individual models of mental health adopting a more social perspective … This is of value for a subject of research where social and personal factors operate in complex inter-relation and where traditional medicalised research has frequently failed adequately to address all aspects of mental health issues. ( Beresford 2009 , p. 190)

Research funders and academic researchers need to do more than invite service users to sit on panels to discuss research where the assumptions have already been established … Change will require a collaborative approach and a respect for personal experience, which has been absent from the previous 150 years of the development of biomedical psychiatry. ( Wallcraft 2013 , p. 208)

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