Involving pharma

It was with a heavy heart and a deep sense of irony that, on #EURef result day, I attended a conference organised by the European Patient Academy on Therapeutic Innovation (EUPATI) and the Association of British Pharmaceutical Industries (ABPI) about public involvement in pharma research. It turned out that it was the best thing I could have done that day. I left feeling reminded (as if I needed it) of the immense benefit of working with European partners in health-related research – be these people, patients, charities, healthcare, research and education organisations, and the pharmaceutical industries. These partnerships stand proud and strong amongst the rubble of our political earthquake and its aftershocks.

Supporting people to have a voice in medicines research and development carried out by industry, including pharmaceutical companies and the life-sciences industries, has gained traction recently. When I first dived into this scene a few years ago, I was re-exposed to a ‘deficit model’ of public engagement that I hadn’t encountered for quite some time: “We just need to educate the masses about how wonderful pharmaceutical research and development is so that they will trust us and want to take part in our research”. I paraphrase, but I heard this sentiment often enough. The rhetoric was even more flawed given massive public distrust in the pharmaceutical industry, collectively accumulated over years. And when we carried out some research into the beliefs and attitudes of the pharmaceutical industry towards patient involvement in research, although many were positive towards the concept and felt that it could contribute to increased trust in pharma, few even knew what it was, how to do it and who was responsible for doing it.

My, how things have changed then, and in a short space of time too. ‘Patient insight’ in industry-sponsored research is now all the rage (though, please, can we all speak the same language? Words count). There are now whole conferences for industry focused on patient involvement (eg. Eye for Pharma summit, and the EUPATI ABPI event). Recent evidence from the Wellcome Trust indicates that people trust pharma scientists nearly as much as they do charity scientists, to provide medical research information (and both much more than journalists). Patient involvement has evolved from information-giving and PR, market research and a piecemeal approach (usually towards the end of the medicines development process), towards the desire for more ‘upstream’, early engagement and working practices of a partnership nature. Recently, the ABPI produced a guide to collaborations between charities and pharmaceutical companies in the UK. Just yesterday, the Nuffield Council on Bioethics issued a statement of aspiration: improving research by involving children and young people, signed by many pharmaceutical companies as well as the UK Health Research Authority. Further afield, the EUPATI project, of which I was part, recently published the A-Z of how medicines are developed and how we can become involved in this development, set up 12 national platforms for patient involvement in research across Europe, including in the UK, and widely influenced policy in this sector. The European Medicines Agency – which regulates medicines development – has formed a “cluster” with the US Food and Drug Administration to improve, share practice and expand patient involvement amongst national regulatory agencies.

So, the future is more rosy. But we’re not there yet. It seems to me that there are still a few fundamental areas to address:

  • Codes of practice. Our research showed that pharmaceutical industry Codes of Practice were repeatedly cited as barriers – real and perceived – to patient involvement in research. Of course, we need to have a robust and stringent framework to ensure that industry contact with people, patients and healthcare professionals isn’t coercive or unethical. But the Code also sets the ethos of how pharma works with patients in research, and currently this is framed as ‘service provision’. I understand, really I do, how difficult it is to change the Code. So, let’s start by translating the Code into what it means practically for patient involvement in pharma research. I am heartened that the ABPI is committed to addressing this – watch this space.
  • Gulf between concept and practice. Clearly, the concept now has buy-in, but there is still uncertainty about how to do effective public engagement (and indeed how to capture and evaluate how it makes a difference). Pharma proclaims its doors open to public contributors; but it needs to step over the threshold. Think about place (at home isn’t always best), people (patient groups, individual patients, members of the public) and purpose (what’s the point?). Take the time to share and learn from existing good practice and, sometimes, failure.
  • Play with other friends. Clearly, collaboration between pharma and patients is key; pharma could also think of working with public institutions (eg. the National Institute of Health Research, NHS Trusts, Universities) and independent organisations (disclaimer, I put myself in this category). We have oodles of theoretical and practical experience, we can support both pharma and people in the processes of involvement, and we can act as ‘honest brokers’. Perhaps, as public and independent organisations, we also need to open the gates to our playground a bit more, whilst thinking about how to play together safely and respectfully for all concerned.
  • Dare I mention money? It’s the elephant in the room. Effective public involvement in research requires investment – not just money, but time, effort, skills, relationships. I’m assured that there are industry funds out there, but clearer signposting and guidance to these would be great.

 

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George’s Marvellous Medicine © Roald Dahl Nominees Ltd

 

In, out, shake it all about

My first ever vote was in a European election. Ever since, I have been a fervent believer in democratic rights, especially as a woman. I am fierce in my determination to vote and to urge others to do so too, whatever their beliefs. Likewise, I want everyone to know that they have a vote to cast in health-related research, and to cast it. Democracy and research may suffer from low turnout, misunderstandings, tensions, complex (and sometimes unwieldy) systems; but both are ultimately the richer for a more engaged population.

My career has included some European projects. Without exception, these have been challenging: intellectually, logistically, professionally and personally; some have been bad-tempered, tortuous, too political. But all of them have been illuminating and worthwhile because they have been so collaborative; they have enriched me, my practice and my thinking and I have made some friends and colleagues for life. Ditto, for my projects that have supported people in research. The EU and the democratisation of research might not be perfect, but they are both worth fighting for.

On 23 June, I will vote REMAIN. For me, this is an ideological choice. Constructive debate and cooperation are going to do more to address injustice and inequality than division and defensive toxicity. A culture of ‘us’ and ‘them’ isn’t going to help anyone, let alone the greater good for our society and/or health research. Over 5500 scientists have signed the Scientists for EU petition to REMAIN supporting the message that: “scientific advance and innovation are critically dependent on collaboration. To remain a world-leading science nation, we must be team players.” Absolutely. And European citizens are part of this team. Just look at the real patient benefits and research impacts brough about by coalitions of researchers and those with rare diseases working across borders to innovate and communicate research. Just one example of how it’s better to effect change from within than without.

Isn’t it ironic then that, this year, Manchester – the birthplace of the Cooperative movement – hosts the European City of Science and the European Science Open Forum. Already, the City is transforming wholesale into one vibrant cultural science venue, thanks to the efforts of all our diverse human capital*. As part of the Forum, on 25 July, a month after the #EURef result, I will be chairing a debate on Public Involvement in Biomedical Research: A Science Revolution? joined by a Panel including a European patient advocate, a young person involved in research, speakers from pharma, academia, the UK National Institute of Health Research and The Wellcome Trust. Clearly, I hope we will be talking about how research can be even better through our diverse European collaborations. In any case, come what may this week, the debate promises to be interesting. Come and join us if you can.

“[…] We are far more united and have far more in common with each other than things that divide us“, Jo Cox MP; in memoriam.

*I use human capital to mean all the knowledge, talents, skills, abilities, experience, intelligence, judgment, and wisdom possessed individually and collectively by individuals in a population.

Words count

One of the first rules of patient and public engagement and involvement with scientific research is to use clear language, avoid jargon and acronyms. Yet we all break this rule, including me (just look at my first sentence): we call it PPI (Patient and Public Involvement not Payment Protection Insurance) or PE (Public Engagement not Physical Education) or PPIE (go figure). Perhaps predictably, at a meeting we held recently about shaping medical research in my NHS Trust, people in the audience said they found the language of “PPI” alienating, especially those who had not been engaged or involved in research before.

Second rule of patient and public engagement: know your audience. This is variously: patients, patients with a condition, patients with multiple conditions, publics, the general public, lay members, carers, members of the public, service users, clients, communities, young people, children… You get the picture. Many people are happy to be defined in a particular way; but many people aren’t – a recent small scale survey showed that 32% of people with chronic conditions did not want to define themselves as ‘patients’. Plenty has been written about how medicine can dehumanise patients. We are not intersecting Venn diagrams or sub-categories of each other.

My particular passion is how to get more people engaged and involved in health-related research, especially ‘not the usual suspects’, those who wouldn’t normally think of having a voice in research, and to see how this can be a force for social change. I have been lucky enough to get a Wellcome Trust Engagement Fellowship to explore this. My vocabulary now includes expressions like seldom-heard voices, disadvantaged schools, underserved audiences, marginalised groups. I am beginning to find it so hard to use the right words that I am sometimes dumbstruck!

And it’s not just me… One of my Fellowship mentors has challenged me to come up with some different and/or unifying terms for all of this. And some personal, professional and Twitter exchanges have got me thinking. My friend who works with people with learning difficulties told me that, in their work, they are encouraged to use the term ‘people we support’ (I won’t abbreviate it, though they do). I like this.

So, I haven’t solved the problem. But I’m going to start here. By calling people, people. And supporting them. Yes, different people that I work with will have specific characteristics and circumstances, and I will talk about these in the way that they want them talked about (because I will ask them). I am not advocating that we shouldn’t ‘know our audience’; but I am saying that we should (and many already do) think carefully about how we define them.

It might mean that my word count will go up; but hopefully my words will count.

 

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About me

I am currently a Wellcome Trust Engagement Fellow, on secondment from my day job as Director of Public Programmes at Central Manchester University Hospitals NHS Foundation Trust and the University of Manchester.

I am passionate about inclusion in, and democratisation of, health-related research. My Fellowship will explore how public engagement with research can include ‘not the usual suspects’ and act as a catalyst for social change.

My career has spanned neuroscience, stem cell and genetic research, science writing, biomedical ethics, public engagement, patient involvement and science policy, both as a practitioner and strategic adviser. I have peered down the microscope in several labs including during my PhD in Edinburgh and as a postdoc at Guy’s Hospital and the Institute of Psychiatry. Some of the organisations I have worked for include Elsevier Science Ltd, The Wellcome Trust and the Parliamentary Office of Science and Technology.

Me and my fellow Fellows: Delia Muir (left) and Steve Cross.

C0121634 Wellcome Trust Engagement Fellows 2015
Credit: Wellcome Library, London. Wellcome Images