Our systematic reviewer Stephanie, has written a series of three blogs to help explain how we try ensure our reviews ask the 'right' questions. In this final blog of the series, Stephanie reflects on the challenges that are still present in achieving full, fair representation of people from different racial and ethnic backgrounds in priority setting activities.
Inclusion in mental health priority setting
Non-white people are more likely to face mental health difficulties, but are less likely to be included in healthcare research priority setting exercises. In this blog, I want to briefly consider inclusion in relation to mental health research priority setting, and specifically question the challenges that are still present to achieving full, fair representation of people from different racial and ethnic backgrounds.
Full representation of all patient groups is critical, particularly in a multi-cultural society in which peoples’ religious beliefs, cultural norms and life experiences are wide and varied. The NHS seeks to establish a norm of putting patients and the public first, where the maxim ‘no decision about me, without me’ encapsulates an expectation of active, individual patient involvement and patient choice, no matter who you are or where you come from. It has been argued that while we are currently witnessing a ‘super-diverse’ culture within the UK (including varied countries of origin, migration experience, and legal status), we are falling short in the challenge of meeting the needs of such a varied population in terms of health profiles and behaviour.
As I discussed in my previous two blogs, the mental health research agenda has dominantly been shaped and led by groups other than people with lived experience. Although there is undoubtedly a shift in culture, with many researchers engaging in greater levels of patient and public involvement (PPI), co-produced and user-led research, there is still a long way to go in the quest to achieve full inclusion on other demographics, particularly race and ethnicity.
Bearing these issues in mind, can we be confident of equal representation of people participating in mental health research priority-setting exercises? And what are the possible reasons for lack of equal inclusion, particularly on the basis of ethnicity in people with mental health diagnoses? I don’t presume to know firm answers to these questions, but I was jostled to consider these issues more closely after observing a surprising lack of racial diversity in priority-setting exercises first hand.
I worked with a research group that took incredible efforts to engage as many members of the community as possible in their priority setting of digital technology for mental health. When collecting priority questions from the public, although the primary method of gathering uncertainties was performed using SurveyMonkey (an online survey tool), the team were aware that any questions from people less likely to engage in digital tech/ the internet had a high likelihood of being missed. Therefore, along with more pioneering efforts to engage people on the social media sphere (methods included holding a Twitter chat), face-to-face workshops were held to engage people less ‘tech-savvy’ who identified as being less confident with using digital technologies.
Even with these extensive efforts to establish equal representation in demographics and experience with digital tech, the reality was that there were: more women (making up around 70% of respondents); more people who identified as ‘highly confident’ using digital technology (around 80% of respondents); more people aged between 25-54 (around 70%); and more ‘white British or white other’ (88% of respondents) who took part in the initial surveys.
Based on assumption, I was less surprised that more people fell into the 25-54 age bracket, and that the majority of respondents considered themselves ‘highly confident’ using digital tech, given the digital tech topic and the people more likely to be engaged in its use (‘younger’ people). However, I was surprised at the lack of representation of people other than ‘white British/ other white’ in both the surveys and during the final workshop, particularly when the research group had taken extensive efforts to engage as many people from different backgrounds as possible.
I was surprised, because research indicates that black or black British populations are over four times more likely to be subject to detention under the Mental Health Act 1983, more likely to be diagnosed with a mental health problem and more likely to experience poor outcome from treatment.
Could this lack of involvement be related to higher likelihood of disengagement from mainstream mental health services, leading to stigma, social exclusion and deterioration in their mental health?
Is this even an issue related to priority-setting in general, or does the overarching Western social construct of ‘mental health’ prove incompatible with different cultural beliefs?
Does the current mental health care system actually serve to isolate people from different cultural and religious backgrounds further?
Questions far too big and complex to answer in this little blog post. And there are people much better placed than me to provide authority on this subject.
But did I wonder: is this a pattern seen in other physical healthcare priority-setting exercises beyond mental health? From the other mental health-related James Lind Alliance (JLA) priority setting partnerships (PSPs), I was unable to find any explicit demographic data detailed in published outcomes on their website. Not all publications for PSPs present demographic data of their respondents, but from a select few PSPs publications related to physical health that I randomly inspected, respondents to surveys were dominantly identified as ‘white British or white other’, with non-white responders generally making up no more than 20% of respondents (for example, 12.6% defined as ‘black and ethnic minorities’ in the vitiligo PSP; 3.9% defined ‘black, Asian and minority ethnic’ in the miscarriage PSP; and 18% defined ‘black, Asian and minority ethnic groups’ in the Type 2 diabetes PSP).
Having not contacted the research groups who published PSPs without this demographic information, I cannot speculate as to why this data wasn’t reported. PSP research groups may well have witnessed an equal inclusion rate in terms of cultural and religious background (it would be interesting to know). If not, however, it is important that this type of data is recorded and published in order to make transparent who exactly is being reached in prioritisation exercises, as well as who is being missed in order to make sure, as researchers, we can improve our methods of inclusion.
Research prioritisation exercises should absolutely include patient, carers and clinician groups together, on equal footing, to help identify evidence uncertainties that are important for each of these groups. We should also, however, make greater effort to ensure equal participation, or ‘deep inclusion’, on the basis of socio-economic backgrounds, age, gender, sexuality, ethnic and cultural identity. This is not a simple issue. This risk of not achieving full inclusion in such priority setting exercises is that validity and generalizability of any prioritised research questions to the ‘super-diverse’ population will be hampered. Social justice also takes a hit when allocation of resources is affected by research priorities dominated by a majority white population.
We need to broaden our conversations and ask difficult questions, and be ready to hear criticism and frustration on behalf of groups, particularly in the field of mental health, that are still underrepresented in research priority setting, but clearly overrepresented in mental health practice.
Stephanie Sampson, March 2019
At the time of writing Stephanie was a Research Fellow in the Centre for Reviews and Dissemination at the University of York. Steph worked closely with Cochrane Common Mental Disorders as part of an Economic and Social Research Council (ESRC) funded knowledge exchange collaborative with Tees, Esk & Wear Valley (TEWV) and Northumberland, Tyne and Wear (NTW) NHS Trusts.
Previously, Stephanie has worked with the Cochrane Schizophrenia Group at the Institute of Mental Health, University of Nottingham. Before working with CCMD she worked as a research consultant for MindTech’s Digital Technology in Mental Health James Lind Alliance Priority Setting Partnership (PSP), assisting health and social care workers, carers and people with lived experience develop their top ten questions for research.
- Barnett P, Mackay E, Matthews H, Gate R, Greenwood H, Ariyo K, et al. Ethnic variations in compulsory detention under the Mental Health Act: a systematic review and meta-analysis of international data. Lancet Psychiatry. 2019 Apr;6(4):305-317. doi: 10.1016/S2215-0366(19)30027-6. Epub 2019 Mar 4.
- Hollis C, Sampson S, Simons L, Davies EB, Churchill R, Betton V, Butler D, Chapman K, Easton K, Gronlund TA, Kabir T. Identifying research priorities for digital technology in mental health care: results of the James Lind Alliance Priority Setting Partnership. The Lancet Psychiatry. 2018 Oct 1;5(10):845-54
- Memon A, Taylor K, Mohebati LM, et al Perceived barriers to accessing mental health services among black and minority ethnic (BME) communities: a qualitative study in Southeast England BMJ Open 2016;6:e012337. doi: 10.1136/bmjopen-2016-012337
- Pratt B, Merritt M, Hyder AA. Towards deep inclusion for equity-oriented health research priority-setting: A working model. Soc Sci Med. 2016 Feb;151:215-24. doi: 10.1016/j.socscimed.2016.01.018. Epub 2016 Jan 13.
- Redwood S, Gill PS. Under-representation of minority ethnic groups in research — call for action. Br J Gen Pract 2013; 63 (612): 342-343. DOI: 10.3399/bjgp13X668456