Being Human (or… Managing Difficult Situations in Public Involvement in Research)

This blog is a personal perspective on an event, written with input and approval from members of the Primary Care Public Involvement Group PRIMER, the main organisers of the event.

“Public involvement in research is all about relationships”, says Carole Bennett (Chair of PRIMER), opening our discussions on ‘Managing Difficult Situations in Public Involvement’. What happens when these relationships – as most do – encounter choppy waters? How do we navigate them? Where do we drop anchor? What provisions do we set sail with?

We’ve all been there, as public contributors, researchers or public involvement practitioners. But we don’t like to talk about it much…

In a carefully and thoughtfully organised morning, our workshop tables, comprised in equal parts of public contributors and researchers, with some creative public engagement practitioners (myself included) begin to identify examples and themes of difficult situations in public involvement in (health-related) research. On our table, these include:

  • The importance of recognising complex power dynamics in public involvement in research,
  • Identifying and dealing with inappropriate behaviour, which can (at times and unfortunately) come from all parties in public involvement,
  • The vital role of clear and open communication, again from all involved,
  • Navigating continuity, chaos and control in public involvement relationships, as well as emotions and boundary setting,
  • The importance of taking steps to anticipate and prevent, as well as manage, difficult situations.

So, what can we do to avoid difficult situations?

Lots of logistical, practical things. Ground rules, agreed methods of communication, clear instructions. Working with trained creative facilitators to enable safe spaces for disruptive conversations. But, most of all, and especially for those who feel constrained by rules and regulations (and let’s face it – rules, regulations and processes are what we do best in research), let’s focus on our values, our motivators, our drivers, our limitations.

Let’s move away from the cultural imperialism of the research environment on public involvement in research. Let’s be human.

Our afternoon discussions creatively focused on fictional but fact-based and highly resonant case studies around:

  • Power dynamics
  • Dealing with emotional issues
  • Social media
  • Becoming unwell
  • Harassment

I can’t possibly capture all the discussions here, and they will be fully reported in due course by the (amazing) organising team*. But guess what came up again?

Being human.

Martin Lodemore, from INVOLVE, summed it up nicely: we need to move towards values and principles that enable researchers to give more of themselves within this work. Processes are important, but values are essential for building relationships based on respect and trust.

Which led me (and others, of course) to think. What if we started our public involvement in research from a different place? What would planning, delivery and training in public involvement in research look like if we started from a place of acknowledgement of power dynamics, mutual empathy and welcoming positive disruption, instead of a place of procedure and public involvement formulae? Moving away from the cultural imperialism of the research process towards being human. Towards being a bit messy, non-linear, emotional, creative; but importantly, with the support and mutual connection a relationship brings, and of course, some agreed boundaries (safe words?). Understanding that our relationship might not always cruise through smooth waters, we might break up on the jagged rocks, but we have a cargo load of humanity on board. Perhaps it’s too scary a place for some.

But we’re on it (with others from the meeting). Watch this space.

*Managing Difficult Situations in PPI was an event held on 7 February 2017, organised by PRIMER, the NIHR Greater Manchester Patient Safety Translational Research Centre, funded by the Social Responsibility team at the University of Manchester

Relationships © Rashid Ibrahim

Should we celebrate the role of women in the public involvement movement?

“Shouldn’t we celebrate the role of women in the public involvement movement; the leadership role they have played in changing the culture of research?” asks Simon Denegri, in his blog marking 100 years of women’s suffrage.

Absolutely, we should. As one of these women, I feel very proud to have championed women, public involvement and engagement in scientific research, and women who work in public engagement and involvement in research.

I’ve been giving a few Women in STEM talks recently, which I’ve greatly enjoyed, and have made me think.

We know that women are chronically underrepresented in science. And many initiatives such as ScienceGrrl promote women’s in science (as I hope I do too). Long may these continue to provide positive female role models and advocate for change. Though I would add: without demanding that women take on unsustainable additional workloads (cf. Athene Donald’s blog about Athena Swan) and without placing too much of the onus on women to change themselves rather than the workplace changing (cf. Royal Society’s Parent Carer recommendations).

We are, by contrast, overrepresented in science communication and public involvement in scientific research roles. A recent survey by the British Science Association showed that, of respondents from the science communication community, 66% were women. As Simon Denegri says, most public involvement leads in the NIHR (myself included) are women. Bravo to each and everyone who succeeds in championing public involvement in sometimes overtly hostile research environments (both to public involvement and to women). Ironically though, public involvement is still dominated by men in its higher echelons both in the NIHR (forgive me, Simon!) and other medical research organisations such as the Wellcome Trust (which is working towards changing this through its Diversity & Inclusion priority area).

However, what I do is sometimes considered – and I quote – “soft and fluffy” and because I “failed at being a scientist”. I know that I am not alone in having experienced these sentiments.

Of course, I can counter this on so many levels. My profession – yes, I count it a profession – requires:

  • In depth knowledge of research processes, methods and governance
  • Detailed knowledge of several specific health research areas
  • Relationship management and facilitation skills
  • People and social skills, working across a range of audiences from the disenfranchised to the highly corporate
  • Clear and accurate communication skills
  • Creative flair and talent to inspire and engage
  • Conflict management
  • Incisive impact and evaluation skills at project, programme and strategic levels
  • Passion, drive and commitment.

Need I go on? I could.

So, to all out there who might draw tenuous (ahem) correlations between “soft and fluffy” skills, gender, and female dominance (I use this word provocatively) in public involvement, beware the message this might send.

Yes, we need more diversity within our public involvement workforce – my impression is that we are mainly white, middle class, heterosexual and cis – but today of all days, let’s celebrate the role of women in the public involvement movement.

Update 7 February 2018:

And here are some women in public involvement that I would like to celebrate:

Leah Holmes, Annie Keane, Suzanne Parsons, Katharine Cresswell, Emily Robinson, Olivia Joseph, Safina Islam, Cassie Wilson, Jahanara Miah, Kerin Bayliss, Jemma Tanswell, Suzie Henderson, Victoria Brown, Erinma Ochu, Kathy Evans, Kate McNulty, Tara Hewitt, Elizabeth Lynch, Athene Donald, Caroline Sanders, Claire Planner, Rebecca Morris, Shoba Dawson, Rebecca Hays, Sally Giles, Sarah Knowles, Ailsa Donnelly, Carole Bennett, Carolyn Gamble, Suzy Bourke, Dawn Perry, Kay Gallagher, Lamiece Hassan, Mary Tully, Sarah Fox, Iqra Choudhry, Paula Wray, Marisha Palm, Meroe Candy, Amy Sanders, Farrah Nazir, Rosie Tooby, Greer Roberts, Sassy Molyneux, Dorcas Kamuya, Noni Mumba, Clare Matterson, Elspeth Mathie, Kath Maguire, Meerat Kaur, Mona Fareh Mohammad, Mags Bradbury, Louca-Mai Brady, Jenny Preston, Philippa Yeeles, Jess Zadik, Tina Coldham, Zoe Gray, Mary-Rose Tarpey, Katherine Cowan, Angela Saini, Amy Vreeke, Brigitte Nerlich, Sheila Pankhurst, Sarah Iqbal, Bobbie Farsides, Francesca Baker, Louise Clifton, Jess Wade, Sarah Allan, Suzy Wilson, Anita Shervington, Delia Muir, Alex Julyan, Cecilia Medupin, Natalie Ireland, Jess Thom, Elizabeth Kimani, Cara Afzal, Melanie Chapman, Chloe Sheppard, Mary Chambers, Katherine Cowan, Margo Horsley, Marieke Navin,  Sarah Chapman, Lauren Couch, Emily Dawson, Esme Ward, Robyn Challinor, Kristina Staley, Sophia Collins, Hannah Robertshaw, Liz Barling, Lisa Jamieson, Rachel Matthews, Jenny Irvine, Irene McGill, Heather Williams, Ruth Ibegbuna, Wendy Mitchell, Nicola Perrin, Rose Dowling, Rita Long, Marina Joubert, Lesley Paterson, Keisha Thompson, Sally Crowe, Sheila Jasanoff, Luisa Massarani, Latha Sekhar and many many more.

As well as some pretty cool dudes: Nathaniel Hall, Simon Denegri, Jim Elliott, Simon Stones, Simon Parry, Alan Higgins, Stuart Eglin, Mat Hickman, Imran Khan, Simon Chaplin, Tom Ziessen, Sam Illingworth, David Gilbert, Lewis Hou, Shane McCracken, Steve Cross, Robin Hoyle, Julian Rayner, Alun Davies and many more too.


Ode to a denier

Inspired by Sam Illingworth’s The Poetry of Science, and based on scientific, social scientific and science communication peer-reviewed publications related to climate change, I wrote this…

Ode to a denier

Our rising tide of experiments and evidence
Provide only fuel to your fossil fire
A warming world? Rubbish, hot air, nonsense,
To you, denier, science is but a liar.
In dying species and acidic seas,
Receding freeze, peak waste, lands, dessicate,
You see dodgy data, experts of guff,
Conspiracy theories.
Explorers are biased, science second rate,
Full of huff and puff – you’re calling our bluff.

Science, of mind this time, maybe untrue too?
Tells me your character correlations:
Male, tough, politically blue through and through,
You’re wary of disarming emotions,
A lover of life’s age-old hierarchies,
You are not naive, as some would have it:
You like the status quo (perhaps their music too)?
“Socially dominant” (technically)
You believe in authority, and submit
Yourself to a God, on your knees, in a pew.

How do I impress you, oh dominant one?
My communication has gone badly:
Facts and figures really don’t fit your fun,
And sorrow for tomorrow isn’t your currency.
So, I’ll appeal to your pride in country and duty,
I’ll listen to you, put myself in your shoes,
I won’t tell you you’re wrong, I’ll regain your trust.
Perhaps through prose and poetry,
I’ll tell you a story and rhyme with your values,
So we don’t all spontaneously self-combust.

Co-production, or what?

Over the last year, I’ve had the privilege to be part of an amazing project called MH2K, putting young people at the heart of mental health policy in Oldham, Greater Manchester.

Briefly, the project was this:

  • First, twenty Citizen Researchers from very different backgrounds volunteered to interrogate mental health facts and figures, research and views to identify the top five mental health challenges facing young people in Oldham;
  • Then, they designed and led 42 roadshows focused on these challenges and their potential solutions, comprised of quizzes, multimedia, discussions and debates, deliberating with nearly 600 other young people from all walks of Oldham life;
  • They synthesised their findings and worked on an equal footing with MH2K’s advisors – people whose jobs are in mental health service delivery, policy, research and engagement – to come up with joint recommendations for the future of mental health in Oldham;
  • Finally, they presented their work to a group of 85 people from 27 organisations at a big celebration event (and many more, beyond, online).

You can read all about the project’s methods, outcomes, recommendations and evaluation here.

Here, I want to focus on why I think the project was so successful (and yes, I’m biased). Here’s a clue: it’s all about the people.

Agents of change, changing agencies
Creating Citizen Researchers as agents of change was a pivotal part of MH2K’s success. A little apprehensive and nervous to begin with, these young researchers flourished because of the project: they learnt more about mental health, they put their faith in some of their ideas about how to combat issues such as stigma, they grew in confidence; with guidance, they developed presentation, listening and basic research skills. Some found that the project helped their recovery following a mental health challenge; others chose to pursue a career in mental health care because of the project. All of them enjoyed themselves; all of them became agents of change.

Importantly, now that MH2K is over, Citizen Researchers will not be left disappear into the ether, nor to teeter on the edge of change. At the outset, Citizen Researchers expressed high expectations for tangible change to occur and for continued involvement beyond the end of the project. MH2K listened: some Researchers will continue to work with Oldham policy-making, charitable and civic organisations, to drive MH2K’s recommendations forward and to shift the ways of Oldham’s agencies to become more inclusive of, and led by, youth.

Diverse young people talking to diverse young people
MH2K’s Citizen Researchers were a truly mixed bunch of 14-25 year olds: Muslim, Christian and atheist, of diverse ethnic heritage, sexualities, learning abilities, and mental health experiences. All shared enquiring minds and a passion for mental health. Young people who took part in the roadshows learnt about mental health and felt listened to too; some changed their beliefs. They opened up to the Citizen Researchers because of who they were: young, their peers, from similar backgrounds. Conversation was informed, frank, and free. Such honesty can be hard to come by when we try to engage people about a difficult topic in a relatively short space of time. But MH2K’s Citizen Researchers nailed it. And Oldham’s mental health horizon is now all the better for it.

Not just diverse young people working together
MH2K assembled a pretty impressive panel of people from varied civic, charitable, healthcare and research organisations to act as advisors for the project and to work hand in hand with the project team and the young people. Because of this process, MH2K’s resulting recommendations benefit from strong buy-in and being approached from all angles. The professional partners in the project report stronger existing collaborations as a result of MH2K, as well as new connections.

A brilliant team
Guided by thinking and methods in youth work, youth leadership and deliberative democracy, the project team were thorough and inclusive from beginning to end. They instilled trust and respect; they worked with empathy, gave space and encouraged expression from others. Importantly, they were able to do so because they planned and appropriately budgeted for a detailed process. Having the commensurate investment of time and energy, as well as knowledge and skills to facilitate engagement was crucial to MH2K’s success.

Co-production or what?
I’ve been asked if MH2K was a co-production project and whether it empowered people. Judge for yourselves. What we did might be called co-creation, co-production, participatory policy-making, participatory decision-making, experience-based co-design, peer-to-peer communication, empowerment. For me, it reinforced the value of lots of different people working together towards a clear and relevant common goal. I’m so proud of the project and all the people involved in it, whether it’s co-production or not.

Some of MH2K’s Citizen Researchers at work

Packing punch

This is a guest blog for Invisible Grail whose mission is to bring inspiration, creativity and authenticity to writing and communication for those who work in higher education. Invisible Grail’s passion is nurturing extraordinary professional writing believing that writing could, and should, have a greater impact for everyone in universities – to influence, persuade, negotiate, engage and connect.

Packing a punch

The Medical Director of a Very Important Healthcare Organisation speaks with emphasis, gravitas and lots of clever diagrams. We’re talking health, science, innovation, evidence, data, patient benefit, public trust. Big words, big concepts.

The room feels heavy under the weight of expectation and yet another PowerPoint presentation. The temperamental projector puts pressure on speakers to perform.

My turn next. A dry swallow as I step up to the imposing podium: “I don’t need the projector, thanks.”

An almost imperceptible reaction: the corner of a mouth smirks surreptitiously, a furtive ocular roll strains microscopic tendons, a guttural clearing rises above huddled heads.

My colleague winks.

A pause, then:

My voice quivers,
In rhythmic semi-quavers,
My hand shakes lightly,
I’m sweating ever so slightly,
The words come flowing,
As I recite my poem.

Another pause, then:

A rumble of thunder drums the air, a round of applause rolls in my ears (the first of the day, might I add). My words oxygenate the room; we are revived, inspired (not my words). There’s even an involuntary tear in one eye (not mine).

I’m relieved, of course, that my poem packs a punch. Although maybe I shouldn’t be: it’s my job, after all, to connect academia and people. “Public Engagement” and “Patient and Public Involvement” with health research, is what I do. These non-descript phrases come with equally helpful acronyms: PE and PPI. Are you thinking sweaty gym kits and dodgy payment insurance? I am.

In reality, I’m a scientist and a lover of the written and spoken word. My team and I work daily to creatively plan, design and explain health research hand in hand with patients, communities and marginalised groups. We use writing, poetry, performance, the art of conversation. Even grime.

Except sometimes, I don’t always practice what I preach. I’ve lapsed into buzzword bingo and strategy-speak with the best of them. Reciting my poem is part of a conscious effort to resist relapse. I’ve recently been reminded that metaphors bridge the known and the unknown, the unimaginable and the imaginable; that they are “as necessary to science, as to poetry*”. Important too for our understanding of science: use a blueprint metaphor to teach the complexity of genetics and school students come away with a more deterministic view than if you use a recipe metaphor**.

Poetry and science are fertile cross-pollinators of one another. The magnificent Ada Lovelace, the world’s first computer programmer, discovered the powerful potential of a calculating engine through ‘poetical science’. Both mould themselves with uncertainty running through their veins; they offer surgical insights into the heart of the matter (whatever that might be). Perhaps they achieve this through a shared precision; perhaps my poem acted as a pacemaker to the room because it transfused abstract concepts with detail, human relationships and the relatable world.

In any case, over lunch, the Medical Director of the Very Important Healthcare Organisation, and several others, ask me if they can share my poem with their colleagues, patients, friends, family.

“Yes, yes, yes, please do,” I answer. “But better still, write your own.”


*Jacob Bronowski, Science and Human Values. 1956
**Heijkoop MEA, The meaning secondary school students ascribe to genomic metaphors. 2013


Don’t talk to me (an evidence-based poem)

Don’t talk to me (an evidence-based poem)

Don’t talk to me about facts and figures,
In a way that gives me medical jitters.

I understand evidence, really I do,
But you don’t make it easy, do you?

A bit less, please, jargonese,
And legalese, in PILs and SPCs*.

On paper so transparently thin,
It’s easily thrown into the bin.

Where’s the benefit information?
A risky business, this medication.

I don’t mean to poo poo your peer review,
It’s just… I don’t trust you.

Especially if you’re big pharma,
Face it: you’ve got bad karma.

Help us to talk to you,
We’ve much to offer, too.

Our words are woven,
With experiences, human.

Medical proof can only get better,
Working together, boxing clever.

Don’t talk to me, without my family,
They’re part of my thinking alchemy.

My brother, my sister, by blood or by water,
My mother, my lover, next door’s daughter.

That queue behind me?
I trust them, implicitly, even when we disagree.

And if I’m in a minority,
The queue is much much longer than three.

Don’t talk at me, speak to me,
Tell me a symptomatic story,

Alive with compassion and care,
Some science too, with creative flair,

One proven in life’s laboratory,
Not given to flights of fantasy.

“The plural of stories is culture”;
Testimonies lend us structure,

Narrative data to inform,
Metaphorical and evidential brainstorms.

Don’t tell me: drugs are the only medicine,
Fine fettle is more than a regular regimen.

A roof over my head, a warm comfy bed,
An honest job, that won’t make me sob.

Food in my bowl,
Food for my soul.

Perhaps most importantly?
My other humans in relation to me.

*PILs are Patient Information Leaflets and SPCs are Summary of Product Characteristics, both found in the sheets contained in packets of medicine.

Why I wrote this poem

In response to my week last week, including:

  • Reading the Academy of Medical Sciences‘s report: “Enhancing the use of scientific evidence”. The report highlighted that: only about a third (37%) of the public trust evidence from medical research, compared to approximately two-thirds (65%) who trust the experiences of their friends and family; people are highly sceptical of the role of the pharmaceutical industry in medical research; communication of evidence, including in patient information leaflets, and reference to risk:benefit ratios of medicines, should be clearer and more accessible; patient involvement in medical research should be significantly strengthened. And related blogs from Simon Denegri & the British Medical Journal.
  • Following the #EvidenceLive conference on Twitter, particularly threads relating to patient stories in healthcare and medical research.
  • Reading a peer-reviewed paper focused on how women rely on their social networks to make healthcare decisions when newly diagnosed with breast cancer.
  • Attending an arts and health event, focused on tackling health inequalities through creative collaborations.
  • Reading an interview with Duncan Selbie, Chief Executive of Public Health England
  • Being reminded of Elspeth Murray’s fabulous poem: This is Bad Enough. Read it too.

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.