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.

Pills, potions and pongs

Young people want to be involved in clinical research and they have valuable contributions to make. Significant efforts have been made to work with older children in medicines research and development, and initiatives such as GenerationR reach children as young as 8; generally speaking though, few resources and initiatives target younger children.

imageProfessor Hallux’s Miraculous Medicines, a new series of seven 3-minute podcasts produced by me and Fun Kids Radio (with advice from GenerationR, Nuffield Council on Bioethics, young people and scientists), addresses this gap, inspiring 7-12 year olds and their families to think about clinical research. The podcasts explore the what, how and why behind medicines research, and the importance of inclusive conversations. Featuring pills, potions and pongs, journeying via Ancient Egypt, Rome and the modern day, Professor Hallux, Nurse NanoBot and Body set about finding a new medicine for Body’s tummy ache. Fun and informative, the podcasts are broadcast nationally and are free to download to listen at home, in the classroom, healthcare settings and as part of informal learning activities.

We hope that the podcasts stand alone as entertaining listening for children and their families. We’re also particularly interested in how they might be used to support the active involvement of children in clinical research. For example, my local Children’s Clinical Research Facility already has an impressive portfolio of activities to engage younger children with research, including dedicated play specialists to help understand what’s going on, information sheets about each study written specifically for younger age groups, a whole raft of trust- and relationship-building activities; not to mention brand-spanking new treatment and chill-out rooms, co-designed with young people, and featuring their artwork and a ‘roof garden’ with changeable lighting. Currently, however, there is no formal way of actively involving young people and children in designing, planning and carrying out research. We are committed to changing that, as part of the Facility’s future plans, and hope to use the Fun Kids Radio podcasts as stimuli for conversations and collaborations with young people and children.

What’s clear already, is that listening audiences are incredibly interested in young children and research. In the first two weeks of broadcast, Professor Hallux’s podcasts have been viewed over 3,000 times – this is about 25% more than average views for other Fun Kids pages in a similar time period. My colleagues at Fun Kids nearly fell off their chairs at this number (unfortunately, I wasn’t quick-witted enough to record this for comedy sound effects). And over 600 parents have opted in to being contacted by us in the future about children and clinical research.

Please listen to the podcasts here. Please spread the word about them. I would be delighted to know what you think about them – good or bad! – as well as whether they might be useful to you and how. You can drop me a line below or at bella.starling@cmft.nhs.uk.

Happy Listening!

 

 

Science engagement – going global

One of my proudest career achievements was persuading the Wellcome Trust to support biomedical ethics and public engagement internationally*, mainly in low to middle income countries. Arguing the ethical imperative for public engagement as a component of sound research, and the need for equity in public engagement practice across the nations and populations where Wellcome has a research presence, I also strongly believed (and still do) that we, in the UK, have much to learn from public engagement practices in diverse global settings.

I was therefore delighted to re-engage with this international community of practice at the Global Health Ethics and Engagement Network meeting in Kenya in September 2016. Led by the Ethox Centre, the network comprises inspirational ethics and engagement practitioners and researchers from across the globe, including (but not limited to) Wellcome’s global health research centres: Africa Health Research InstituteMahidol Oxford Tropical Research Unit; KEMRI-Wellcome Trust Research Programme; Malawi-Liverpoool-Wellcome Trust Clinical Research Programme; Wellcome Trust Brighton and Sussex Centre for Global Health Research; Oxford University Clinical Research Unit. No less than 60 countries were represented at the meeting.

The meeting explored several themes:

Using as a stimulus the Nuffield Council on Bioethics’s work on Children and Clinical Research, involving young people in research highlighted:

  • The development of a young person’s advisory group to the main research hospital in Cambodia;
  • Ethnographic and social scientific research into children’s understandings of clinical research in Myanmar and Malawi;
  • The extensive schools engagement carried out by KEMRI-Wellcome in Kenya and many other global health research programmes;
  • Research into Kenyan views on if, when and how children should (or shouldn’t) be actively involved in research.

Using contexts from Kenya, Thailand, Vietnam, Malawi and the UK, including examples of engagement with migrant populations, female sex workers, rural communities and undernourished children, the vulnerability theme explored:

  • What constitutes vulnerability in research engagement?
  • What are our moral obligations in terms of engaging vulnerable groups?
  • Are children automatically a vulnerable population?
  • Who is vulnerable? Clearly, some of the people we engage, but also the fieldworkers, engagement practitioners and researchers?
  • Are there transferable ethical and/or practical approaches to engage with vulnerable groups?

Consent is an enduring ethical complexity for both research and engagement practice. Presentations from New Zealand, Uganda, South Africa, Ethiopia, Rwanda and Thailand addressed:

  • What constitutes valid consent and how does engagement contribute to and/or inform the process? For whom (eg. Research Ethics Committees, participants, families and friends, frontline workers, funders, principal investigators)?
  • What are consent and engagement considerations in large-scale health surveillance studies?
  • How do we strengthen the processes for explaining and translating research terminologies and concepts (eg. Placebo, randomisation)?
  • Factors affecting consent to surgical research;
  • Challenges for engagement and consent related to complex research (eg. HIV, genomics);
  • Navigating rumours, stigma and jealousy;
  • Data sharing policies and implications for consent and engagement;
  • Consent and engagement in pragmatic clinical trials (trials that evaluate the effectiveness of interventions in real-life routine practice conditions rather than in ‘optimal’ conditions).

Finally, discussions moved from engagement as an essential part of the ethical conduct of research towards approaches that broaden scientific literacy, promote participatory conversations and ultimately influence research. This included – in both urban and rural areas – the use of science cafes, community debates, film shows, participatory community theatre, spiral walking, radio, puppetry and visual art; the important role played by frontline workers (fieldworkers, engagement practitioners) and their capacity development needs; working with Community Advisory Boards; and much much more.

Witnessing the incredible range and creativity of engagement approaches, often in challenging circumstances was humbling and addressed the spectrum of engagement:

  • Engagement as an essential component of ethical research: for example the Community Advisory Boards that are an integral part of many of global health research groups;
  • Engagement to promote scientific communication, literacy and critical thinking: for example, KEMRI-Wellcome’s extensive schools engagement programme;
  • Science as culture: for example, the creative use of participatory theatre to explore scientific research in rural and urban communities in South East Asia;
  • Engagement informing research: for example, AHRI’s participatory spiral transect walking, listening to communities to inform research programmes before they start.

Reflecting on the meeting, common themes, many with resonance in the UK, also emerged:

  • Engagement and involvement of people in research, with diverse audiences and a variety of methods, is alive and well, globally (though it is by no means common practice everywhere);
  • Some engagement practices across different contexts are similar and/or transferable; others unique to specific settings;
  • The interdisciplinary and thoughtful approach, often evidence-based, ethically and social scientifically informed, taken to engagement in many international settings;
  • There is a growing and thriving community of engagement practice, globally, with whom we, in the UK, should be engaging more.

Nevertheless, common challenges remain, including (again, many with resonance in the UK):

  • How to strategically link the various aspects of engagement across its spectrum of audiences, aims and practices (eg. linking study-specific engagement with, for example, wider cultural initiatives);
  • Securing buy-in from institutional and wider stakeholders about the value of engagement, in all its guises;
  • Active involvement of communities in early and late stages of the research cycle (eg. Setting research agendas, feeding back research results to participants and communities);
  • How to balance making science ‘fun’ and engaging, and taking steps to ensure social responsibility and social justice within engagement with research;
  • Engagement practitioners (eg. Research fieldworkers and creative practitioners) are often in a unique position with multiple responsibilities that require thoughtful management;
  • How to recognise engagement activities, and the learning derived from them, is difficult. Publishing is one option – perhaps, via this blog piece, I can persuade the journals Research for All or Research Engagement and Involvement to consider a special issue in this area? Notwithstanding that it is also important to publish engagement pieces in scientific journals, are there also other alternative ways of recognising value, aside from publication?
  • Engagement can include elements of ‘being a good neighbour’ eg. As an employer and often a healthcare provider within a geographic area, offering ‘collateral’ benefits to local communities such as training courses not directly related to research outputs.

If you want to find out more about engagement with research in low to middle income countries, I encourage you to visit Ethics & Engagement Across the Wellcome Trust Major Overseas Programmes and MeSH – the global health community engagement network, and other online communities (eg. Science Communication Africa’s Facebook page)

Coming to this meeting was undoubtedly one of the highlights of 2016 for me. It also felt like coming home. Thank you for inviting me.

*In 2002, the Wellcome Trust Biomedical Ethics in Developing Countries funding scheme was launched, followed in 2005 by the International Engagement Awards. Funding for international ethics and public engagement activities can now be sought as part of the Humanities and Social Science funding, Public Engagement Fund and Public Engagement within Research grants.

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Junju dispensary, Kilifi District, Kenya. Site of many KEMRI-Wellcome research projects with active community involvement.

 

Engagement & complexity

Complexity seems to be a hot topic right now. The inherent complexity of modern science, complex interventions in healthcare, complex conditions, the complexities of interdisciplinary research.

So, how to engage with complexity? And is engagement complex in itself?

A bit of head scratching, a decent understanding and a lot of creativity helps when engaging with complex science. Narrative, metaphor, visualisation, participation, jelly babies, immersive theatre and making, are just some of the approaches I’ve used and believe to be effective when dealing with complex science. Developing and using such approaches, often in partnership with others, nevertheless requires an understanding of their theoretical and practical complexities (OK, perhaps not for the jelly babies).

And it’s not just the science that’s complex. Engaging with complex science often means dealing with other, equally complex disciplines and perspectives. Take genomics: effective engagement with genomics often marries complex science, with complex social scientific and ethics research.

“Know your audience” is often the first mantra of public engagement. Well, there’s “nowt as strange as folk”. And nowt as complex either. Think inclusively and be ready for people to do things completely differently.

Working across disciplines, practices, audiences and organisations invokes all kinds of expectations, power relationships, agendas, hopes, fears and frustrations. Hopefully, we mediate and adapt, and juggle all these emotional and political balls to create some great engagement. Relationships change, evolve and sometimes can go wrong. Sometimes then, the juggler can be re-cast as the jester.

As public engagement practitioners, we use our inquisitive, analytical and creative minds and skills to understand and navigate all these areas of complexity.

So yes, engagement is also complex. But it’s so worth it!

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Image credit: Centre for Complexity Science, Imperial College London 

A mythology of engagement

Asclepius was the God of Medicine. Whispers reached him that medical research was sometimes guilty of forgetting about people and mere citizens were beginning to lose trust in the process. So, he created the God of Interpretation – Translatus. From Mount Olympus, Translatus proclaimed: “We need to do more to inform, inspire, engage and involve people with and in medical research”. It helped that he could say this in several languages.

To support him in his task, it seemed logical to enlist the help of four sprites: Informus, Engagus, Inspirus and Involvus. Informus carefully laid out every available fact and figure about medical research, clearly and with infographics, according to Olympian institutional guidelines, font size, colour palette and prescribed language in a 396 slide PowerPoint presentation. “Who in all of Greece is going to read that?”, sniggered Engagus. Engagus had procured an interactive stand at the Panathenaea, complete with Archimedean buoyancy aids for younger Greeks to take away. “Where’s the depth, man?” countered Inspirus. Inspirus had created a magical mystery tour of the human body via the medium of interpretative mime. “And the point is…?”, snorted Involvus, who until then had been running a focus group with patients under a tree, listening actively and carefully. Informus impatiently looked at the antikythera mechanism on his wrist. All of Hades broke out.

Dejected, Translatus returned to Asclepius who had taken refuge up Mount Parnassus. “How do I get myself out of this fine mess?”, he asked. Asclepius shook out his picnic blanket with his Rod and invited him to sit with him and the polis who had escaped the fisticuffs. Sheepishly, Informus, Engagus, Inspirus and Involvus limped over. Muses appeared as if from nowhere, bearing fresh nectar tea. “Are you all sitting comfortably?”, they hummed, “then let’s begin…”.

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Image credit: http://fineartamerica.com/featured/rod-of-asclepius-li-van-saathoff.html. Rod Of Asclepius is a piece of digital artwork by Li van Saathoff.

Young people & research: Is it done right?

This blog was co-written with Robyn Challinor, a member of the Liverpool Young Person’s Advisory Group.

How long would it take for the sun to melt an ice cube the size of Earth?

The best questions come out of children’s mouths: I am lucky enough to be reminded of this every single day. The question above was from a 6 year old. I couldn’t answer it, but I could help him find out how to answer it. Part of my quest is to enable young people to ask more questions about medical research, and for these to be heard (and acted upon) by our research professions.

The number of children taking part in clinical research is increasing: in 2015, 42,678 children and young people (under the age of 16) in England took part in clinical research*. This is over three times more than in 2011. Over the same time period, the overall number of people taking part in NHS-based clinical research has remained pretty much the same or has even reduced, in some research areas. These numbers don’t include health-related research taking place outside the NHS (for example, in Universities, or commercially). I have still to find a figure for the total number of children and young people taking part in medical research in the UK, but one thing is for sure: medical research with children is only going to grow and grow.

The links between participation in research (eg. being in a clinical trial), engagement with research (raising awareness, information giving, debate and dialogue) and involvement in research (active contribution to research) are still not fully understood. There is often a grey area between what is clinical care and what is clinical research. The good news is that there are LOADS of fantastic initiatives and resources for young people out there:

Young people have come up with their own guidance & ‘Top Tips’ for being involved in medical research (cf. Involving Young People in Research) and have very definite views on the ethics of carrying out research in children (cf. Nuffield Council on Bioethics: Children and Clinical Research) and how they should be involved in the process.

So, our job is done, right?

Not quite…

Science, or how science works? Most young people we work with are science literate to various degrees. But they’re not necessarily aware of the processes of research. I spend a lot of time finding creative ways to explain how research works. This is a fantastic way of enabling natural inquisitiveness to flourish, and, although I think that pretty much any effort to engage young people with science is worthwhile, I would like to see more focus on engagement with the scientific research process, its social, ethical and political dimensions too – promoting enquiry rather than scientific knowledge per se. ‘How Science Works‘ is a fantastic curriculum initiative underpinning how science is taught in schools – could a similar initiative underpin all public engagement with young people?

Known unknowns and unknown unknowns. It might be self-evident that some young people will have low awareness of scientific research. They are also generally unaware that they can have a voice in research, through, for example, advisory groups such as GenerationR. We found this out through our Young People’s Opinions Underpinning Rheumatology Research (YOURR) project. Engagement with biomedical research needs to focus on this too: what can a young person take away from the engagement activity to enable them to express their voice? Who can they contact? How can they build on their engagement post-engagement?

Different worlds? Achieving the above depends on having a ‘holistic’ view of working with people, including young people. Sometimes the worlds of ‘engagement’ and ‘involvement’ collide (see my fellow Fellow Delia Muir’s excellent blog on this) – but both have much to learn from each other. We need to see their relationships as non-linear and mutually dependent. Our wires need to cross for engagement and involvement in research to advance. Some of our most powerful projects have worked in the space between these two worlds, drawing on methodologies from each. The Theatre of Debate’s ‘People are Messy‘ is a fantastic example of a joined up approach.

Make it fun… But with a serious edge. “What young person wants to engage with a dry old process?”, I hear you say. Anything can be made engaging, you just need the right tools and skills. Working in partnership is key to this: we have found that arts-led approaches, and working with existing community organisations, work really well. And, even more importantly, work in partnership with young people (and I don’t just mean ‘user-testing’) to develop your engagement and involvement. They bring with them oodles of creativity. Digital technologies are here to stay and young people can do more with them than I will ever know. That’s not to say that established approaches (eg. advisory groups) aren’t valuable – there is just plenty of scope to expand on them. Young people are now using their voice within advisory groups to change the way researchers engage with them.

Peer to peer interactions work well. One of our really successful projects (Our Health, Our Future – it won an award!) worked through drama and hands-on activities to engage 12-17 year olds with public health research. Younger students worked with each other, and with sixth formers (and our team, a playwright and some researchers) to devise public health research priorities for their communities. Including this peer to peer interaction as part of the whole project worked really well. The rise of the vlogger is also testament to this approach. It might seem scary, but losing a bit of control and letting young people ‘own’ their engagement can be constructive and effective.

Finally, the biggie: equity and access. Recent work on Science Capital shows that although young people in schools find science interesting, young people taking science post-16 still fall into the same social, ethnic and gender groups as 20 years ago. I couldn’t find any figures, but I’m guessing it’s a similar picture when talking about engagement and involvement of young people in research. So there’s an important role for engagement and involvement to address this issue. I don’t have the answers yet, but armed with my arsenal above from my experiences so far, I’m going to give it a go!

As Robyn says: current 18 year olds have been brought up with a stigma surrounding clinical research. Only now because of the changes in the curriculum, wide media coverage, and social media activity surrounding research (eg. fundraising campaigns for oncology patients that have gone viral on Facebook) younger people are opening up to the idea of not only being part of research, but questioning: is it done right?

*registered with the Children’s Speciality of the National Institute of Health Research (NIHR, the research arm of the NHS) Clinical Research Network (CRN)

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Image credit: www.cutestfood.com