Patient powered research?

Here’s a blog I wrote for NESTA about research, people and power:



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

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