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.