Ireland gets to grips with public involvement in research

There are two ways to get to Dublin City Centre from the airport by taxi. You can either join the traffic that wends its way slowly overground. Or you can take the Dublin Port Tunnel which gets you there in no time at all. On behalf of all harried travellers, can I thank the person who had the vision of a tunnel.

I was in Dublin on Tuesday to attend the Irish Health Research Forum’s conference on public involvement. The Forum was set up earlier this year following a study of the research landscape in Ireland conducted by Professor Bernie Hannigan and commissioned by the Medical Research Charities Group (MRCG) of Ireland. It is worth mentioning that Professor Hannigan has recently been appointed the Director of R&D at Public Health England.

The Hannigan report entitled: ‘Health Research Landscape in Ireland: What Researchers Say’ recommended that MRCG bring together a wide coalition of partners to promote and advance health research (the aforementioned Forum). But also that there needed to be more focus on the development of public involvement. Hence yesterday’s event, a first I believe.

It was flattering to say the least that the Forum had turned to some familiar names from the UK to provoke thought and discussion: Angela Coulter from Oxford, Jennie Poppay from the University of Lancaster and Liam O’Toole from Arthritis Research UK. We are undoubtedly further ahead of them in many ways in putting public involvement on the agenda. As are other countries such as Denmark represented there by Mogens Horder.

But as we were quick to stress, it is too easy to let the shine of our successes blind us from seeing our failures over the last twenty years. They may well learn from these but we can and should also learn from the fresh approaches they will take. And with emails in my inbox from Sweden, Norway, Canada and France, we can be sure of new and innovative ways forward. A fact that is both inspiring and exciting.

Thinking about the Forum and its future role, I believe that one important and highly strategic failure has been our inability thus far to develop a shared vision among charities, Government funders, HEIs, industry, NHS England and academia about the future role of the public in health research. There have been attempts, not least through the United Kingdom Clinical Research Collaboration (UKCRC). The problem isn’t so much that people are doing their own thing. It is that these ‘things’ aren’t pushing in more or less the same direction.

Another – and I should credit Jennie Poppay for saying this at the meeting but you will here me say a great deal more about it in the coming weeks – is that lots of reasons (good reasons I should add) are given for doing public involvement. From making it more accountable to increasing the numbers of people in a study. However, focus on these reasons and the activities that might support them has perhaps led to us astray from our original purpose.

This mission is for the health research system to treat the knowledge that patients and the public gain through experience, as currency of equal value to other forms of expertise in the knowledge economy that’s going to be necessary to create to improve health and wellbeing.

I also enjoyed the comments by Eibhlin Mulroe, CEO of the Irish Platform for Patients’ Organisations, Science and Industry and Task Force Leader, EUPATI Consortium. As someone who has just entered the sector she reflected on how amazed she was that in medical research we don’t do what’s second nature and talk to the market first about the products that are needed and desired.

Hear, hear. That’s just tunnel vision. And to be avoided at all costs.

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