Democratising research

So I thought you might be interested in my thoughts on innovation and public involvement that I shared with the audience at the PatientsParticipate! conference at the British Library on Friday afternoon.
The real star of the show thought was patient advocate, Graham Steele, who gave us an absorbing tour of social media and public involvement in research.
And, yes, I shamelessly stole the title of my blog from an article that has recently appeared in Nature about the James Lind Alliance approach to identifying treatment uncertainties.

Thank you for the invitation to speak to you this afternoon. I am conscious that you have been working hard all day and it is Friday afternoon no less. So, my aim is to make a few simple observations if I may from my perspective as CEO of a research charity – Ovarian Cancer Action – but also as Chair of INVOLVE. INVOLVE is the Government funded national advisory group on public involvement in research.
The first is – and I hope that given the audience you will agree with this – that science and scientists are switching on fast to the fact that the public and patients are important partners in research, innovation and its adoption. The drivers are many – from ensuring greater public accountability to improving communications – but I hope that whatever the starting point the endpoint is a mutual acknowledgement by all that the public have a role and valuable contribution to make, in delivering good science.
Only last week there was a clutch of news articles from a pharmaceutical industry perspective articulating their desire to forge a new contract with society by involving the public earlier and more meaningfully in the design of research and new interventions.
The public sector – NIHR in particular – is arguably ahead of the game in requiring public involvement as part of its funding awards. And this week I was visiting our Ovarian Cancer Research Centre where there is now active discussion about how to involve women more closely in the work that they do across the board from basic science to clinical trials.
But I think we would also agree that we are still only at the end of the beginning of this story of partnership.
So my second point is that one of the most exciting aspects of how the story does unfold is the role that the development of new technology and social media will play: in giving all partners greater opportunities to work together but also in developing new ways to making science more accessible .
I am sure you are all aware of the strong precedents in terms of the internet, mobile phone technology and texting to name but a few, for the way in which the interaction between the public and inventors has been vital in taking and improving upon innovation, making it relevant to the many not the few.
Similarly, the tools you have been talking about today are barely formed. So for those of you who consider themselves new technology or social media novices you should be heartened by the comment of an industry expert who said to me yesterday that ‘no one yet has a handle on how to best use these things.’ It really is up to us.
My third point is that we must not, however, forget first principles. So it is important that we define what true ‘connectivity’ if I can all it that, means for all partners in this context. And for me, the key word that must be part of that definition is ‘value’ – value in terms of what the public can expect to see as a result of participating but also in terms of what they are expected to contribute. Given that too often this value is defined without patients and the public even in the room I am pleased that we have avoided that mistake by beginning where we have today. We must also dismiss the notion that the value will be equal at all times.
The last point I wish to briefly make is very specifically about the power of the lay summary.
On my way here I couldn’t help think that there are many parallels with those classic anecdotes about patient leaflets – you know the ones designed by doctors, nurses, researchers and everyone else which stretch to pages and pages. Only for it to then be given to patients who distil it down to three paras which get to the heart of the matter and in an understandable way.
The lay summary is often not only written by the wrong person but written with the wrong person in mind and I think this project will have much value in perhaps challenging some of the notions of how these things are done and finding a new way of doing it.
But I do know from my own very short time in my current job how important the lay summary can be in making science cross many barriers, new and old, when it does work. As a way of bringing the story of the science alive it can be truly transformative. We must not lose this power as we begin on this particular story.

2 thoughts on “Democratising research

  1. Hello Simon
    The BL workshop on communications and medical literature was a timely one for us, as we are covering that topic in a workshop for the NIHR Trainees’ Coordinating Centre in Birmingham in July, when we are working with lay colleagues and NIHR reps to get this essential use of a lay summary understood. It is also a very useful topic for the NIHR programmes helping the young research teams develop their skills in working with lay people. Also in helping patient and carers understand how they can help teams communicate better with their own lay colleagues, patients involved in healthcare research and prioritisation.

    Would it be OK to use some of the quotes from your comments in our workshop?
    Best regards
    Jean Cooper Moran, NIHR CCF patient and public involvement manager


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