Knitting engagement

As part of this year’s Engage conference, I was invited by those kind folk at NCCPE to share my story of navigating change and embedding public engagement and involvement in health research over the last 10 years. Part of the brief was to bring an object that captures something of that story of change. Here’s my object, story and some of what I said:

wool

Why wool?

Sheep have a special significance for me. My PhD investigated how a sheep virus, from the same family as HIV, causes brain damage. I spent many a happy hour chasing sheep around rolling Scottish mountains. Later, as a science communication student, a marking moment was reading Brian Wynne’s paper on the importance of lay knowledge and living experience in science, based on the experience of Cumbrian sheep farmers during the Chernobyl nuclear crisis. Today, I live amongst those sheep. They are an everyday reminder of why I do what I do.

My mission is, and has been, to knit that lay knowledge into the fabric of health research, into the structures of my organisation, Manchester University NHS Trust.

Patterns and crafting change

A plethora of patterns are available on the knitting market. Jumpers, hats, baby booties, blankets, which to tackle first? Which aspect of change and embedding engagement to knit first?

10 years ago, my post, and my team were unusual. We still are. Through the vision of previous leadership, my post had been created (albeit with soft money) to support public engagement with genetics. We took baby steps: we enabled researchers to engage, we supported people living with genetic conditions to take active role in research, we debated, inclusively, the hot topics of the genetics day. But we were still the add-on: the bobble on the hat.

Time and funding moves on (read: funding comes to an end). We moved away from a narrow focus on genetics, to work across a wider range of health research. The beauty of knitting is that the options, the stitches, the patterns, are limitless. Knit one, purl one. The delicate, sensitive stitches of baby booties; being bold and brave with a statement jumper. Choose a pattern, a public engagement or involvement method, a way of embedding change, from the multitude that are available, to suit your purpose. And get knitting.

Now, we have woven lay knowledge into the Executive and Governance structures of our research organisation, our researchers learn how to work hand in hand with patient partners, our community of patients and people involved in research is celebrated and thriving, we connect with thousands of people and patients everyday through our projects and events, in real life and online. And occasionally in knitting groups.

Knitting needles

Do I represent the knitting needle of engagement? I don’t like to think of myself as pointy but… I have had to:

  • Acutely navigate the sometimes sharp politics of health in a competitive environment that often questions the value of public involvement and engagement,
  • Demonstrate incisive strategic, evaluation and implementation skills.
  • Always, always, be clear about the point of engagement and involvement. What are you knitting and what are you hoping to achieve (mine’s currently a jumper)?
  • And yes, sometimes, you have to be pointy to pierce the crap and cynicism, and accusations of ‘woolliness’, that are sometimes directed at public engagement and involvement.

Dropping stitches

It happens, I’ve dropped a few stitches in my time. It’s not the end of the world. We learn and move on. You can still make a wearable jumper with a few dropped stitches.

Different wools

You may have noticed that my wool is made of strands of different colour. What’s not so visible is that some strands are synthetic, some are wool. Having different strands of wool makes a better jumper.

My mission now, and that of our team is to make engagement and involvement to become more diverse. Health research generally does not reflect our population – be that in the profile of who takes part in clinical trials, or who is engaged or involved in health research, or who becomes a health researcher. We’re developing a range of different approaches across our team and research organisation to support a more inclusive research environment. Knitting with different wools, according to different patterns, some of which may not have been knitted in our organisation before.

“This is bigger than us”, say some colleagues. Perhaps, but that’s not a reason not to try. I might need to get a bit more pointy.

How long is a piece of wool?

18 balls of wool it took me to knit my last jumper. That’s a long piece of wool. Of course, embedding change takes a long time, we know that. I’ve been going 10 years in my current context, and there’s plenty more to do. But I’m always surprised at how people think it can take single ball of wool; I’m always amazed at the length of 18 balls of wool.

Not to mention that balls of wool are not cheap. Embedding engagement effectively, requires resource. Obvs.

Knitting circles

“Help us set up a new knitting group”, they said, “we’re just across the road”.

Gladly, I did. The group thrives to this day. Except something unexpected happened. It seems that we’re now in knitting competition. When did “My jumper is better than yours, but I’m not going to share the pattern” happen?

Public engagement, and embedding public engagement is becoming a competitive advantage in health research. This is to be welcomed, in terms of according value and status to our practice. There are more and more ways to share patterns, to evidence the value of engagement and draw on experiences of culture change – today included. But we still need to avoid the pitfalls of siloing practice, of racing to the next trendy pattern to show our knitting brilliance.

Cast off

My jumper is taking shape. It’s not finished yet. It’s not followed the most straightforward pattern. It’s not perfect. But I’ll be wearing it with pride anyway.

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Growing pains (or growth and leadership in public engagement with research)

My knees ached when I was 14. Grinding soreness from the bottom of my thighs to my patella. “Growing pains”, my mum said.

Being in the school swimming team at the time, I asked our team coach, my PE teacher (that’s PE for physical education, not public engagement) for some advice. “It’ll pass, but it’ll be uncomfortable”, came the response.

Are we experiencing some growing pains in PE (that’s public engagement – and involvement in research – not physical education) just now? Some recent academic papers and personal comment, might suggest so.

Against this backdrop, my brief for a keynote presentation at a recent international workshop was: What does leadership and growth look like in public engagement with research? In 10 minutes. Easy, non?

Subsequently inspired and informed by a multitude of conversations and provocations at the workshop, here are some (perhaps more coherent) thoughts…

Leadership treads desire paths

Leadership in engagement with research does not come from a single constituency. Patient leadership is growing – make sure you read David Gilbert’s blog on this – though is not often (currently) recognised by research institutions. Academic leadership roles are emerging. Many Universities now have ‘Academic Leads’ for public and/or patient engagement or similar types of posts. The academic study of public involvement is a growing and legitimate field of enquiry.

My leadership, and that of many others, is based in practice. It occupies a unique space at the intersection of formal (eg. NHS, academic) environments, and informal (community organising, social change organisations, individual patients and collectives) environments. In such spaces, leadership looks different to traditional concepts and hierarchies of leadership. It treads its own line, navigating complex power relationships between people and institutions with care and caution, kindness and challenge. The desire path teeters at the edges of academic, corporate and patient worlds. The sometimes precipitous edge can be a vulnerable place, but also an inspiring one.

Growth in our sector recognises that these paths work in parallel, interweave and complement each other. One path does not, and should not, trump or trample the other.

desire path
A desire path outside my local GP surgery, linking two pavements. Desire paths are revealed by natural footfall, often emerging as shortcuts where constructed ways take a circuitous route, have gaps, or are non-existent.

Growth takes pride in our skills, knowledge and attributes

I have sometimes been referred to as a ‘Jack of all trades’, a tad negatively: is a Jill of all trades, mistress of none? No, we can master all. Perhaps, as a community of practice, we have had a tendency towards the self-effacing, perceived as facilitators that help the ‘real’ work of scientific research. As if scientific research can happen without engagement.

Growth takes pride in the value of our skills and attributes within the research environment. Let me list just a few:

  • The ability to distil, and be crystal clear about, the purposes and potential outcomes for engagement (not always an easy task!) – often at the 11th hour
  • Strategic thinking and planning, often with very limited resources
  • Relationship management and teamwork working with a huge variety of people and patients, academic and research disciplines, creative partners and cultural organisations
  • At times, transforming conflict (or perceived conflict) into productive thinking partnerships
  • Sensitive, skilled and precise facilitation skills
  • Influencing skills, tact and assertiveness
  • Emotional intelligence; people and social skills, working across the disenfranchised to the highly corporate, the enthusiasts and the nay-sayers
  • Clear and accurate communication skills, with a healthy dislike of jargon
  • Creative flair and talent to inspire and engage
  • Mastery of an arsenal of engagement and involvement methods, and generally getting stuff done
  • Resilience (in bucketloads)
  • Incisive impact and evaluation skills at project, programme and strategic levels
  • Passion, drive and commitment
  • The ability to understand and unpick complex and wide-ranging areas of scientific research in order to understand how to do ‘good’ public engagement and involvement
  • A thorough appreciation of research methodologies, ethics and governance processes…

Need I go on?

Perhaps less obviously, emotion is part of our armoury of attributes. Leadership recognises that emotion can help us to be good at our jobs. Productive conversations come from honesty, frustration, compassion.

Diversity is the engine of innovation

Public engagement with research grows from a diverse field of disciplines and practices: participatory research methods, community development, the arts, digital marketing, anthropology to name but a few. Connecting people and sharing the benefits of research nourishes active involvement in research. And vice versa. Growth learns from leaky boundaries between all the practices that make up inclusive and engaged research.

Leadership takes positive steps to make engagement (and research) flourish more inclusively. Paths in which all varieties of flowers, plants and fungi bloom. Difference, of people and specialisms, thinking and opinion, drives growth.

Desire path of clover
A desire line of clover and other plants

Evidence-based practice is a must, except when the evidence is absent…

We’re getting better at reporting, evaluating and sharing what works and what doesn’t work in public engagement. Two new journals in the last couple of years, dedicated to engagement and involvement (Research for All & Research Involvement and Engagement) evidences not only practice, but also growth, in our sector.

Except evidence doesn’t always exist. Leadership takes a risk, albeit a calculated one based in experience, reflection and knowledge, in experimenting with new approaches and methods (and evidencing them). Sometimes bold steps land on, or create solid paths; sometimes, the ground crumbles beneath our walking boots. Leadership learns as much from failure as from success.

Challenge is good, if a little tiring

Engagement, like any other practice, will only grow through self-reflection and embracing challenge. So it is important to engage (ha ha) with the re-conceptualising, the critiquing (not always constructive) and the cataloguing of failure levelled at engagement.

It’s just it’s a bit tiring. In an engagement career that has, in some shape or form, spanned 18 years or so (am I a grown-up now?) the challenges have been constant – and dare I say it, sometimes come full circle. I guess, then, leadership is about resilience and energy. Though my walking boots may be wrinkled, the tread a little worn and the leather needing a bit of a buff, they have not yet reached an impenetrable obstacle.

So…

My PE teacher was right, of course, my growing pains did pass and my swimming performance was none the worse for having them.

Growing pains within public engagement will no doubt persist (would we be reflective enough, if they didn’t?). But for now, bring on the swim-a-thon!

 

Diversifying the audiences and producers of public involvement in research: The AudioLab

If you follow me on Twitter, you’ll have noticed that I’ve been wittering on about a project of mine called The AudioLab. Read all about it here: https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-018-0122-2

AudioLab 2018
Some of participants in The AudioLab 2018

A tale of three women (or: Tessa Jowell, my mum, research and public involvement)

I wept when I heard that Tessa Jowell had died. Some of those tears were for my mum too. You see, both were formidable women and advocates for social change, who lived with brain tumours and pushed for medical research.

Dame Jowell lobbied for social change through social work, mental health advocacy and politics. My mum did so through acting. I’ll never forget, as a young teenager, seeing her appear on the screen of our old TV in a film highlighting racial injustice in the era of Windrush (“Sapphire”, if you’re curious). She hadn’t told me the film would be on, and giggled when she saw my reaction to her celluloid form. Our subsequent discussions were deeply formative of my political values.

My mum succumbed to a brain meningioma just short of her 60th birthday. Non-cancerous, but certainly not benign. As the tumour began to invade the membranes of her mind, she’d been proud to see me start my career in medical research, as a fledgling neuroscientist. Studies that she would not let me put on hold while she declined.

I wish I could say that I’d gone on to a long and illustrious career, researching the very mechanisms of the brain that had gone awry in my mum. Wouldn’t that be poetic?

But no.

I left the lab to pursue a long (but perhaps not illustrious) career in public involvement in scientific research. Raising awareness of scientific research, catalysing conversations about social and ethical aspects of science, and – importantly – actively involving patients and people with lived experience and knowledge of medical conditions in research. I left the lab partly because I was failing to see fluorescent connections flourish between my neurons in Petri dishes, and real life.

I welcomed Tessa Jowell’s passionate support for more medical research into brain cancers, of course I did. And I welcome the announcement that doubles the amount of government funding devoted to brain cancers. It’s a positive outcome from a good life and a sad death (though, I’ll admit, I’m not quite resisting the cynical urge to shout “opportunistic PR” at Jeremy Hunt on the radio).

But – with absolute respect and heartfelt warmth to Dame Jowell’s memory and her family – my plea to people in charge of research funding, is to consider:

1. Why does it take the death of a well-known figure to increase a research budget? Tessa Jowell was dubbed ‘The People Politician’. Might she have argued for an appropriate resourcing of research budgets, commensurate with everyone’s health research needs, based on our (considerable) evidence base?

2. Research comes in all shapes and sizes. Understanding the biological bases of healthy and diseased systems is without doubt important. Such science is sexy, wondrous, cutting edge, with curative potential. It’s also long-term, expensive and not guaranteed to translate into treatment or prevention. Research is as much about understanding and implementing everyday interventions that might make a difference. A simple straw transformed my mum’s drinking habits and hydration when she was in care, beyond cure. Except, it wasn’t always remembered. Some days, I would take my mum out for a walk in the only rickety wheelchair I was allowed to use. Cherry blossom stroked her cheek and snowed on her lap. Her response was a rare and joyous smile, which meant more to me than any medicine.

3. Research operates in a wider NHS and social context of care. It took ages for my mum to be diagnosed. Perhaps her mental health conditions – she lived with depression and bipolar disorder – were confounding variables. And when the diagnosis did come, the invading biopsy needle removed not just the culpable cells, but her remaining lucidity. My mum’s meagre savings for her old age and my future – she was a single parent – were spent on a hospice far away from home and hospital. Some days, I couldn’t afford the Tube fare there. Those wheelchair walks? Lovely – until we both nearly hit the tarmac as I stumbled from one pavement pothole to another. I cursed the local council. There’s no way – at that time – that research would have even entered my consciousness.

4. Involving patients and carers in the priorities, design and delivery of research helps to make research relevant and responsive to the needs of people with conditions. I have argued before that scientific research should become more human. Many argue that it can guard against research waste. So, I was dismayed to read UKRI’s announcement – yesterday of all days – that they “will work collaboratively with researchers, innovators and entrepreneurs […] charities and foundations […] universities, and businesses from small to large.” No mention of patients, people or carers with lived experience. I’m sure UKRI would tell me that all the above are people, and of course they are. And they will point me to their public engagement strategy (which prizes ‘public understanding’ and support for research). But this misses the point. Expertise by lived experience can offer a different and humanising lens to research leading to a valuable form of evidence production (in partnership, of course).

My mum would have been 85 this year. She taught me that tears – of sadness, anger, frustration, joy – can be forces for good. This blog piece is not meant to score points during a sad time. It is merely my homage to Tessa Jowell and to my mum, and a plea for responsible research.

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

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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.

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