Being Inclusive in Public Involvement (PI) in Health Research

Things to think about: for researchers and practitioners

Dr Bella Starling shares her experience and explains the rationale and process behind the creation of the NIHR INVOLVE guidance ‘Being Inclusive in Public Involvement (PI) in Health Research: Things to think about: for researchers and practitioners’. Bella is Director of Public Programmes at Manchester University NHS Trust and a Wellcome Engagement Fellow. Her career has spanned neuroscience, stem cell and genetic research, science writing, biomedical ethics, science policy, public engagement and patient involvement in research, both as a practitioner and strategic adviser. She is passionate about inclusion in, and democratisation of, health research. She currently co-leads a team specialising in inclusive public involvement in research within the Greater Manchester clinical research ecosystem; her Fellowship explores how public engagement can act as a catalyst for social change.

“In my job supporting public involvement within a busy research environment, I am routinely approached by researchers wanting to connect, listen to and work together with people in research. Often, they are keen to be inclusive, aiming to work with people who might not feel listened to in health or health research; but sometimes they don’t know where to start. In the absence of any official guidance, my advice has been guided by my own and others’ experience and knowledge of working with different people in research. Written down in my trusty notebook, my evolving set of advisory notes became the starting point for the guidance attached to this piece.

I began writing this guidance more formally on a train on my way to a funeral. The funeral of someone who was an inspiration to me. An independent and professionally successful woman, an adventurer with a wicked sense of humour, who spent much of her career fighting against prejudice and trying to change the ‘system’. She impressed on me at an early age to be confident of myself, to stand up for what’s right and to keep going. It’s not without irony then, that she felt unable to access healthcare, worrying that she might not be heard, or her concerns dismissed as inconsequential. She did eventually gather up the courage to take herself to the doctors. She died only a few days later.

Exclusion and inclusion in medical science has been a constant preoccupation of my career. Since I can remember, I’ve wanted to improve the accessibility of medical science across the board:

• As a career option;
• Increasing the diversity of people who take part in research, research ‘subjects’
• Supporting science to communication and engage with a wider demographic, and
• Thinking about how it involves people as active partners in its processes more inclusively.

Medical research is a remarkably biased and inequitable practice, for something that is supposed to be objective:

• The medical research workforce is not diverse; recent reports highlight gender inequality at more senior levels in MRC clinical and health research Fellowships, for example, and UK HESA data for Universities show that , in 2016-2017, 85.2% of clinical medicine academic staff identify as White;
• Data from the US indicate that ethnic minorities are underrepresented in clinical trial enrolment (e.g. Hispanics make up 16% of the US population, but only 1% take part in publicly-funded clinical research). Similar data for the UK are harder to find; as data, including from the NIHR, become openly available, we can better understand this situation.
• People from ethnic and lower socioeconomic groups feel far less confident about being treated with dignity and respect in research compared to their White and higher socioeconomic counterparts (35% of ethnic minority respondents feel confident compared to 50% of White respondents)
• Informal science education has been ‘exclusive’, and many audiences are ‘underserved’ by science communication (cf. British Science Association audience map).
• The NIHR has identified as a priority that: “A diverse and inclusive public involvement community is essential if research is relevant to population needs and provides better health outcomes for all” and references the barriers and system-wide issues that need consideration in overcoming barriers to inclusive involvement (NIHR, ‘Going the Extra Mile’).

Many are taking steps to address this inequity, not least EDIS, Wellcome and NIHR. In 2015, I had the privilege of being awarded a Wellcome engagement fellowship to explore how public engagement with health research can act as a catalyst for social change. This guidance draws from the experience and learning of my Fellowship (including some action research projects e.g. The AudioLab). It is informed by a multitude of people and practices including:

• Working with a variety of people from different backgrounds, including young people seeking employment, LGBTQI individuals and communities, ethnic, faith and religious groups, numerous patients with living experience of different conditions; and with youth workers, community organisers, patient groups, libraries, civic groups, and many more…
• A deeper understanding of the contexts, drivers and methods of pre-clinical, clinical and applied health research, participatory research, qualitative research and action research; and how they do (or don’t) include and empower citizens and patients.
• A particular focus on learning from creative and cultural practices, including with storytellers, playwrights and radio producers, and initiatives focused on the arts, health and social change, including for example, work by Contact Theatre.
• Reading relevant research and guidance in policy, social sciences, medical humanities and other fields (though I would have liked to have read more) related to, amongst other topics, health justice, feminist theory, decolonisation, equality, diversity and inclusion.
• Experimenting with place-based approaches (e.g. Breathtaking Lungs)

My musings on my Fellowship and on Diversity and Inclusion in Health Research, which started on the train that dark day, developed into a blog (you can find the original, and other reflections here) which, in turn, got picked up by colleagues at INVOLVE (the National Advisory Group on Involvement in NHS, Public Health and Social Care Research). Together with their Diversity and Inclusion Group, we sought wider consultation from patients, charities, researchers and beyond, on the emerging ‘Top Tips’. Based on the multiple rounds of feedback we received, the thoughts from my original blog have been transformed into the guidance now published by INVOLVE: ‘Being Inclusive in Health Research’.

We hope this guidance will be useful to a wider community of practice. It is intended to be a helpful series of prompts for researchers, and for those whose job it is to support public involvement in health research (e.g. Public engagement practitioners, science communicators, research managers etc). We also hope that it will be useful to public contributors and everyone who makes inclusive research happen.

The evidence base supporting inclusive public involvement in research is in its early stages but is growing – witness the number of publications on the topic in journals such as Research Involvement and Engagement. No doubt, as it should be, this guidance will be superseded by a stronger evidence base. In the meantime, we hope that this will be a useful start.

My personal hope is that this guidance along with many other initiatives such as EDIS, will help, eventually, support an inclusive culture of health and research. One in which researchers don’t need my help any more to navigate inclusive involvement; and one in which my dearly departed friend might have felt more at home in.”