Top ten tips: diversity and inclusion in public involvement in health research

“A diverse and inclusive public involvement community is essential if research is relevant to population needs and provides better health outcomes for all. We have been struck by the degree to which researchers and public contributors have encountered barriers when trying to work with different communities and populations.”

NIHR Going the Extra Mile

Diversity and Inclusion is the name of the game at the moment – in both public involvement and engagement spheres. And rightly so. My train speeds me towards a meeting addressing the above. Usually (and sensibly) meetings such as these result in requests for practical advice targeted at researchers and engagement practitioners. So, in preparation, I’m reflecting on my experiences and mentally composing my Top Ten Tips:

1. Check your power. First and foremost, acknowledge that engagement and involvement in research operate in a historical and current context of (imbalanced) power relationships between people and research. Even more so if your aim is to work with vulnerable, marginalised groups or those who might not currently engage. My mantra? “Check your privilege & balance fairness” was an inspiring provocation by the philosopher Mark Kingwell at a recent conference I attended. Do what you can to understand the politics of power and authority within your engagement context, your role within that context and how to operate sensitively accordingly.

The reasons for doing engagement and involvement might also be influenced by shifting power dynamics between, for example, funders, researchers, public engagement practitioners and institutions. In my view, engagement activities should seek to positively challenge power imbalances; if they are in danger of being swayed by different power players: clarify, question, challenge the ethics of engagement.

2. “Listen and seek agreement”, Mark Kingwell went on to say. The Wellcome Trust‘s recent #ExpertDebate on Twitter revealed that listening is a vital feature of public engagement. For anyone who subscribes to engagement as dialogue and exchange, this is not new. Dialogue simply does not happen without listening: active listening. We have all experienced the situation where people listen, but carry on regardless. Listen carefully. Then act on what you have heard.

3. Consider the politics of place. Where you engage needs careful consideration. I was reminded of this by a recent passionate discussion online, about whether engagement physically located in institutional settings (in this case, on campus) acts as a barrier to participation. Whilst some consider this a myth, citing productive engagement with various groups in campus settings, campus environments can also be unfamiliar, daunting, territorial, sometimes physically inaccessible and expressions of power dynamics (asking someone to ‘come to you’ being an exertion of authority). Emily Dawson has published widely on how architecture and setting can stop some people from feeling like activities are ‘for them’, and thus limiting the diversity of potential audiences. Agreement focused on the need to work with your target audiences to define where and when activities would be most successful. Universities, hospitals, science centres, libraries, community centres, arts venues, the street, online, social media – the list of places to engage is limited only by your imagination.

Moreover, when engaging with research in the complex health sphere, place-based approaches become attractive by focusing on the social and physical environments of communities rather than on the problems or ‘deficits’ faced by individuals. Typically used in areas of deprivation or need, place-based approaches are bottom-up and asset-based, enabling communities to participate, lead and own activities to address complex issues. The relevance and richness of such approaches may yet challenge the orthodoxy of ‘one size fits all’ engagement.

4. Get from A to B, perhaps via Z. Your engagement objectives may be clearly defined, usually around health-related research content. Yet ‘science’ and ‘health and health research’ are often already emotionally laden and exclusive terms; patients with conditions may prefer not to know. Find another way in, one that builds on social identities or interests unrelated to science or research, and curate some conversations (see point 5). Be prepared not to start where you think is the beginning. Be prepared to have some (perhaps uncomfortable) discussions about the weather, poverty, race, discrimination. Find the common ground and then move forwards. Meander like the rivers I see through my train window: stimulate their source, feed their tributaries and let them flow in the knowledge they will reach their destinations.

5. Collaborate. A rich plethora of creative, community, cultural, charitable, civil society and other organisations exist to engage and have a huge amount of knowledge and expertise. Some specialise in working with particular groups. Find them, work with them to mutual benefit, invest in partnerships. Don’t know where to start? That’s where people like me – and other public engagement practitioners can help. I particularly value working with arts-led organisations. Creative methodologies can be particularly helpful to nurture genuine expression, subvert power and catalyse discussion.

6. Invest in people, Part 1: the people you want to work with, to engage. Understand who they are, their hopes, their fears, their likes, their dislikes and why they might not readily get involved in health. Luckily, there are tools out there to help you, like the British Science Association’s Mosaic and Audience Spectrum research and the Arts Council’s Audience Finder tool). Understand that they might already have negative experiences of (not necessarily health) research and that they might already be over-researched. Or that they might have within them existing or undiscovered passions and talents. Take the time to invest in relationships with people and communities.

7. Invest in People, Part 2: public engagement practitioners, leads and facilitators. There are over 200 of us in the NIHR and many more in Universities, other organisations and working freelance. Two meetings of this workforce at the end of 2017 demonstrated what I knew already: first, that we are incredible polymaths; second, that we are also mostly white, female, and often ex-researchers. Is a “fluffy, human” engagement career what women do when they have “failed” at science (not my words)? And what happens when you Google images of science presenters, or examine the gender balance of senior organisational public engagement roles? We know that representations of women and men in science, engineering and technology largely reproduce dominant gender discourses; what about representations in science communication and public involvement?

If you are in a position to:

  • At the very least, invest in diversity and inclusion, and unconscious bias training for all who engage
  • Seek out and support researchers from diverse backgrounds to engage and involve
  • Curate and savour the mix of your wider public involvement team and stakeholders
  • Avoid the disincentive of short-term contracts for public involvement posts or ‘add-on’ responsibilities to existing posts
  • Think creatively about where your talent could come from next. For the past year, I have had the privilege of working with young adults with creative talents from challenging socioeconomic and health backgrounds. I hope to embed their refreshing ideas and perspectives, and offer them real career prospects by embedding (paid) internships for the most promising of them in our team. Others are doing similar work.

8. Evidence, evaluate, reflect. I’m finding that Theory of Change approaches work well here: as much for evaluation as for strategic planning and stakeholder engagement.

9. Act small, think big. It can be daunting to change the world but a small change can make a big difference. Social change can be effected through small acts of kindness. That transformation in confidence, learning and skills that you have nurtured through your engagement, those more diverse voices that you have supported to be heard in health research, within an individual or groups, can lead to further agency of change.

10. Be values based, socially innovate. The risk with Diversity and Inclusion as an agenda for public involvement is that it becomes (yet another) box-ticking exercise. Working within a values-driven framework may help, as could including the principles of social innovation in our work.

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3 thoughts on “Top ten tips: diversity and inclusion in public involvement in health research”

  1. Excellent set of top tips. Thinking back on what we attempted over the years the one thing I would add is to acknowledge the cultural heritage of your participants. We’ve tried to make young people feel more culturally at home than scientists.

    In other scenarios the concepts of engagement, consultation, discussion are fairly alien or at least unpleasant.

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  2. Hi, I’ve been trying to think new thoughts about this but am stuck a bit with my old sarcastic framing, which, for the record is like this:

    Focus on short-term, one-sided relationships
    Make sure “inclusion” work changes little or nothing about your institution & practices
    Don’t involve target audience in planning or policy
    Assume you know what your audience want, i.e. hair braiding workshop in Black History Month
    See if you can use the language of “inclusion” without the practice = saves time & effort!
    Make participation really expensive
    Ensure the only language available is English
    Represent only the “stale, male & pale”

    Sarah Ahmed’s work on “diversity” and institutional brick walls is very informative for thinking about how change can be superficial and damaging, so we have to include something about sincerity and power and change, that goes beyond making superficial claims about social justice that mask more institutional “same old/same old”. I don’t want to suggest change is easy, but I would argue it is necessary! Your point about organisational change was great in that regard:)

    I’m sure there’s so much more to add, but that’s me for now:) emily

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