Characteristics of achieved sample

The sample was achieved as summarised in Fig. 1. The survey link was accessed by 374 potential respondents. Nearly half (185, 49.5%) completed only the demographics section, discontinuing in some cases, according to anecdotal feedback, because involvement in research did not extend beyond participation. Exclusion of these, and another 24 who reported no service use (n = 3), working outside the UK (n = 2) or no involvement in research (n = 19), gave a sample of 166 whose characteristics are summarised in Table 1.

The sample was predominately female (n = 103, 62.8%) and White British (n = 127, 77.9%). Respondents ranged in age from 21 to 73 years (median 47). With few (n = 22, 13.3%) reporting no formal educational or vocational qualifications, respondents were characteristically tertiary educated and highly trained. Nearly two-thirds (n = 106, 63.9%) reported under- (n = 44) or postgraduate (n = 62) degrees in diverse fields including health, humanities, fine arts, engineering and teaching. Seventeen (10.2%) held research degrees (PhD, MD) and 48 (28.9%) reported qualifications in healthcare fields including medicine, social work, nursing and psychology. Professional and other training reported by respondents was extensive, encompassing counselling, community education and project management. Research-focused training - for example in interviewing skills, software packages, analytic methods, particular study instruments and good clinical practice - was commonly reported. Several respondents reported completing training run by the MHRN or NHS trusts.

Mental health and service use

The sample included service users involved in research and researchers with experience of service use. Most (n = 128) respondents described their mental health and service use, typically reporting long-term severe mental illness, concomitant disability and extensive service use. Although not asked to report diagnoses, many respondents identified themselves as having specific mental illnesses. Those reported were schizophrenia, bipolar affective disorder, personality disorder, major depression, post-traumatic stress disorder and eating disorders. The majority were (or had been) users of public specialist mental health services but use of primary and private services was also reported. Extensive in-patient admissions, often under Mental Health Act 1983 regulations were commonly described. Respondents who included commentary on the perceived quality of services reported positive, negative and mixed experiences. For example, one described experiences as ‘relentlessly negative over two decades’; another noted ‘I found [named service] extremely beneficial… encouraged me to move forward with added confidence… ’.

Self-descriptors

We used the term ‘service user researcher’ in the questionnaire but invited respondents to identify preferred term(s) and to explain their use. Most respondents used a single descriptor (n = 109, 65.7%), sometimes their job title, but 30 used three or more in various combinations, dependent on context. As shown in Table 2, the most commonly used descriptors combined reference to ‘research’ with ‘service use’ or ‘lived experience’ (n = 86, 51.8%) (either ‘service user researcher’ (n = 64, 38.6%) or ‘researcher with lived experience’ (n = 22, 13.3%)). Sixteen (9.6%) respondents always made reference to service user status, whereas 23 identified themselves simply as ‘researchers’. ‘Survivor researcher’ and ‘expert by experience’ were each used by eight respondents. Explanations for choice of term(s) (and responses to other open questions) demonstrated the political, professional and personal complexity inherent in labelling and identification as a service user.

Many respondents reported electing not to disclose service use for fear of ‘having mental health history become my defining feature’ but others regarded the capacity to be open about experience with a receptive audience helpful.

Duration, location, setting, employment status and activity

Reporting a median of 5.8 years involvement (range 0.8-40) respondents were typically experienced researchers; activity of less than a year was uncommon (n = 8) and a substantial majority reported being research active for more than 2 (85%) and 10 years (30%). Most (n = 139, 83.7%) reported activity during the past 12 months, and planning to continue involvement in research (n = 143, 86.1%).

The vast majority of the 163 respondents who provided information about region (n = 153, 93.8%) were research-active within a single strategic health authority or UK region. Most frequently this was London (n = 30, 18.4%), which was among areas identified by each of 10 respondents (6.1%) who reported activity in multiple areas (range 2-11). Although few reported involvement in Northern Ireland (n = 4), substantial proportions were active in Scotland (n = 25, 15.3%) and Wales (n = 23, 14.1%), with every region having at least two respondents.

A quarter of all respondents reported activity across multiple organisational settings in various combinations, with approximately one in ten active in at least four settings. Of the 81 respondents (48.8%) who contributed to research in universities, half were also involved with research in local government and independent settings, or as consultants. The MHRN was nominated as a place of work by nearly a quarter (n = 38, 22.9%) but most of these (33/38) also identified other work places.

As shown in Table 3, in which employment status and sector are summarised, 27 respondents reported self-employment as consultants or researchers (see online Table DS1 for a more detailed version of Table 3). Forty-six (27.7%) reported paid employment as a researcher, with service use a requirement of appointment to the posts held by 20 respondents (12%). Twenty-nine respondents were university-based, with three holding academic posts (for example lecturer). Experience of service use was mandated in 1 academic post and 11 of the other university research posts held by respondents. Experience of service use was also a requirement for 3 of the 4 researchers based in the NHS, and 5 of 13 independent sector researchers. Of the eight students in the sample, two reported holding funding only open to people who had used services.

Twelve respondents (7.2%) reported paid employment in the NHS, local authority or independent sectors, in posts related to service user development that incorporated research functions. Service use was a requirement for appointment to each of these posts.

A total of 73 (44%) respondents reported voluntary involvement in mental health research. Forty-nine (29.5%) of these - who we describe as ‘service user representatives’ - reported no formal paid employment of any kind. The other 24 reported paid employment as academics (n = 9, 5.4%) (working, for example, in law or a biomedical discipline), in non-research posts in NHS mental healthcare (n = 2) or independent sectors (n = 8), or self-employment (n = 5).

Collectively, respondents reported involvement in the full spectrum of research activities, typically as shown in Table 3 undertaking multiple research activities. More than two-thirds (n = 113, 68.1%) reported leadership activities (including study design, project management and funding applications). The majority of these (74/113, 65.5%) were also involved in governance/regulatory activities such as membership of ethics committees and peer review. Most (82/113, 72.6%) also performed advisory roles and (44/113, 38.9%) were additionally involved in data collection, analysis and dissemination, including authorship of articles. Although the activities of respondents not reporting leadership activities (n = 53) were more restricted (range 1-7, median 3) there were no other activities that non-leaders did not report performing. Forty respondents reported concurrent participation in other user involvement activities including advocacy, membership of user forums and organisational governance bodies. Several additionally reported being active politically, working to advance community understanding of mental illness.

Integration of employment-related data and responses to open questions demonstrated that respondents occupied one of six types of roles outlined in the Appendix.

Perspectives on service user involvement in research

Views about user involvement were examined in multiple-choice and open questions. Responses to the latter qualified and contextualised the all but unanimous ‘in principle’ support evident in responses to propositions regarding the right to, and potential benefits of, involvement (Table 4). Respondents wrote of an abiding respect for people categorised as ‘mental patients’ and wanting research to be empowering of, and for, service users. They noted that a particular kind of knowledge and unique insights derived from experience were fundamental to ensuring research achieved the goal of service improvement and life enrichment for people who use services. Indeed, many respondents (n = 28) explicitly attributed their own involvement in mental health research to a ‘passion’ for service and/or social change and commitment to ensuring the interests of service users were central to that change. For some, lived experience legitimised involvement in mental health research. Service use experiences informed views of what worked well and had drawn attention to gaps in evidence, influencing areas of personal interest that became a focus for research.

In contrast to the strong endorsement of user involvement in principle, some equivocation was evident in relation to practice; respondents drew on experience to highlight tensions and difficulties enacting involvement. Of those respondents who stated their views (n = 149), most (123, 83%) agreed that service user researchers are ‘empowered through their active participation in health research’ and two-thirds (n = 99, 66.4%) agreed that non-service user colleagues ‘respect knowledge based on experience’ (Table 4). However, two-thirds agreed that academic mental health research both ‘marginalised service users’ and ‘perpetuates the social exclusion of people with mental illness’. Although half (n = 74, 49.7%) agreed with the proposition that ‘academic researchers value the participation of service users’, more than one in five disagreed (n = 33, 22.1%) and the remaining 28.2% (n = 42) were undecided. Responses to open questions elucidated structural, personal and interpersonal influences on practice and the experience of involvement.

What supports involvement?

Although a small minority of respondents attributed involvement to hard work and/or good fortune, the majority described various personal, professional and social factors as enabling initial or ongoing involvement in research. Support, both emotional and practical, cited by half of respondents was chief among these. Acknowledging that engaging with or employing service users was commonly perceived as risky in academic environments, and that research environments were typically difficult to negotiate, respondents frequently described the sponsorship of a senior researcher or mentor as crucial.

The (earned) respect, encouragement and affirmation of colleagues who appreciated but did not dwell on the difficulties faced, were pivotal. A few respondents reported receiving helpful encouragement from family and health professionals but membership (formal or informal) of a service user/survivor researcher network, comprising like-minded people, was repeatedly described as essential to initiation and maintenance of involvement. Peer networks functioned as critical friends providing moral support, practical advice and peer review.

Several respondents wrote of the importance of being involved in ‘the right type of project in the right type of environment’. Being able to select projects and roles that matched capacity (for example, participating in governance structures/advisory committees rather than collecting data) and afforded flexibility to manage workload were described as enabling participation.

At a personal level, being educated, articulate and assertive, such that sense could be made of the research environment and pitfalls negotiated, were seen as crucial to establishing credibility and acceptance. Self-awareness, capacity to reflect on interpersonal interaction and understanding of group dynamics were considered essential to success as a service user researcher, as was staying well ‘enough’ or having the flexibility to work around periods of ill health. Several respondents wrote of the importance of organisations such as the MHRN, INVOLVE, mental health charities and specified NHS trusts in advancing the cause of user involvement in research and NHS trusts in facilitating access to necessary training, peers and job opportunities. Some, all of whom undertook research in a voluntary capacity, wrote of practical matters including having a flexible ‘real job’, proximity of facilities, ability to travel, and access to and ability to use a computer and the internet.

What challenges involvement?

That expertise grounded in lived experience was not really valued and that different types of expertise were not accorded equal status were recurrent themes. Many respondents whatever their positions, perceived stigma, prejudice and discriminatory behaviour as pervasive and negatively having an impact on the process and experience of involvement.

University environments described as competitive- and outcome-, rather than process-focused, were considered particularly difficult to negotiate by several respondents, including academics.

Respondents described difficulty engaging professionally in ‘business’ when their input was discounted as non-academic, subject to excessive scrutiny for bias or conversely overvalued rather than being subject to critical review.

For respondents whose service user status was known, these difficulties were compounded by the sense that private business was subject to public examination. Respondents described being ‘put on the spot’, expected to share their personal experience in various contexts and experiencing hypervigilance. Colleagues’ (over) concern about their well-being was experienced as intrusive and inhibiting full participation in the ‘workplace’. In these circumstances they described being reluctant to disclose concerns they considered ‘normal’ (for example, after a research interview exploring sensitive issues) for fear of having their response ‘symptomatised’.

Several participants wrote of double binds. Respondents not employed in designated service user roles reported that disclosure of diagnosis and/or experience of service use led to discounting of research expertise, undermining acceptance by non-service user colleagues. In contrast, performing research activity well was sometimes seen to undermine the validity and status of those who self-defined as expert by experience.

Furthermore, developing research expertise and credibility was described as leading to exclusion from the service user community, whereas ‘overexposure’ could lead to dismissal as a ‘usual suspect’ or a ‘non-representative professional-user’ from the research community.

Some concerns related directly to position. Respondents employed as researchers wrote of being challenged by pressure to achieve professionally and work to unrealistic timetables and career prospects. Service user representatives were more commonly concerned with inability to access training and practical difficulties (for example access to essential technology, travelling to meetings held in inconvenient locations and out-of-pocket expenses). The benefits system was described as a major stumbling block, particularly for service user representatives whose involvement was voluntary. Respondents reported that participation in any activity could lead to assessment as having ‘capacity to work’ resulting in loss of benefits, whereas receipt of payments for research activity could involve convoluted reporting and a net loss of income. Consultant/self-employed researchers reported similar difficulties and struggling with the inconsistent flow of work.

Tokenism was reported by several respondents who typically observed a need to retain the traditional research hierarchies and uncertainty around the role of service user researchers and lived experience.

‘I am very aware that service-user endorsement is valuable to academics and researchers. The smart ones have a bank of reliable service users they can call upon to advertise and support their own particular agendas. It is not uncommon to hear a researcher attempt to cover all sins by writing “this was endorsed by our service-user steering committee”. Often this consists of the researchers’ collaborators.’ (Service user representative)

What impact is involvement having?

Respondents typically reported seeing or perceiving an impact of involvement on research process. Whether publicly identified as a service user researcher or not, respondents reported drawing on their experiences (and those of service user peers) to inform role performance. For academic and student researchers, topics, research questions and study design were informed by lived experience. For researchers involved in data collection, the experience of service use was described as underpinning a genuine respect for ‘fellow travellers’ and capacity to connect. This enabled access to ‘hard to reach’ potential participants, and enhanced the quality of data collected because participants ‘felt understood’. Data analysis and interpretation were described as informed by sensitivity and insight developed through service use - ‘adding depth of understanding’. More generally, some respondents wrote of challenging of academics to consider alternate world views, either explicitly or by their presence.

The vast majority of the 125 respondents who completed the question ‘Has involvement in research influenced your use of or attitude to MH [mental health] services?’ reported developing an increased appreciation of the ‘big picture’. They described discovering the diversity of services and service users and constraints and pressures on service delivery. Awareness of the burdens of bureaucracy and the complexity of systems had contributed to renewed respect for service providers. One observed the ‘considerable overlap between service user and staff needs’. These views were concordant with those of the several respondents who reported becoming more ‘realistic’ or ‘pragmatic’ in expectations of services and taking a more proactive approach to their care and treatment.

For a minority, however, involvement in research had affirmed or supported development of a critical position. Awareness of the dominance of medicine, the political nature of ‘madness’ and the stigma of service use, developed through involvement, had made them more wary of services. Critique was also extended in respect of the apparent absence of evidence for many interventions delivered by services and the variable access to interventions.

The question ‘How has involvement affected your mental health?’ was answered by 124 respondents. For a small minority (n = 14) the impact had been predominately negative. These respondents reported that ‘stress’ related to research activity (pressure of work, exposure to personally distressing material and workplace conflict) had undermined confidence and capacity to cope, leading to periods of ill health. However, as other respondents observed, such experiences were not research-specific.

Others (n = 28) reported that involvement had ‘no impact’ or described ambivalent positions.

For the vast majority (n = 80), however, the overall impact of involvement on their mental health had been unambiguously positive. Many wrote that involvement and investment in research activity provided a sense of purpose and belonging, giving meaning to their ‘suffering’, reduced self-stigma and enhanced self-respect. Facing up to the challenges of research was described as leading to discovery of internal resources and development of self-management strategies that promoted mental well-being. Being occupied and active intellectually were considered health-promoting by several and respondents commonly reported deriving a sense of pride in their achievements and developing (or renewing) confidence in their place in community.

The vast majority of respondents (n = 136/149, 91.3%) agreed that ‘all things considered, the active participation of service user researchers improves the quality of mental health research’.