Wednesday, 27 June 2012

Why can't the public have more of a say in research?

There is something peculiar about much of the world of research that appears, at times, to separate the public from the work that is carried out in the name of research in the NHS. This is mainly epitomised in the use of the term 'trial subjects' when speaking about people who have volunteered to become research participants. It is a separation that seems unnecessary and is equally represented in a culture and attitude that does things to others rather than with them.

I can appreciate the need for objectivity, distance and the avoidance of bias but too often the questions that are asked, the priorities and the decisions about what is researched are set by researchers, the academics and government. Research is too centred on the researcher's views rather than on patients' experience. 

At this point I should make clear that I am a great supporter of academic, laboratory and other forms of research. It is unlikely that I would be still be alive were it not for research into the types and size of cancer tumours that can be treated by radiotherapy. I am not a researcher though I often swim beside them in the same waters as I encourage people to become actively involving people in research.

But, when will it truly be the public's turn to inform, influence and form research that is relevant to their needs? How do we make that step change to ensure that research in the NHS properly reflects the needs of those who may in future require treatment and care as much as those with personal direct experience?

My questions are less critical and intended as an open invite to consider how we can better gain the views of the general public. 

The involvement of patients, carers and the public, in recent years, has helped to alter that culture and I believe, greatly improve the climate. Patients are included in many meetings, our views are taken more into account and there is increasing evidence of the impact of this involvement in improving research. Yet despite the development of involvement we witnessed a reduction in psycho-social research which often addresses many of the real needs of those people directly affected by a disease let alone what the public might say.

And, at this point, I stress that I am an advocate for involving people in all aspects and at all levels of research. It is what I do. I assist and promote active involvement in my role as an Associate Director with the National Institute for Health Research Clinical Research Network.

It is relatively easy to involve patients, especially those who have their own communities by which I mean a sense of belonging with an illness, condition and/or disease. Rarer diseases and research about other illnesses have begun to come more to the fore in discussions. Even so we not appear to have an equal say in determining what is researched.

There are examples of gaining wider perspectives on research. The James Lind Alliance brings patients together with researchers, through Priority Setting Partnerships, to identify unanswered questions. The Bob Sang Open Space provides room for dialogue across public services. Y-Touring theatre company take issues into local communities through their 'Theatre of Debate'. 

Yet, there needs to be something more. On a personal level I am unable to think about what expectations I might have had before I got involved, ahead of my cancer, when I didn't think about research. Does it entirely require a particular experience to have an opinion?

So, how might the public have more of a say in research? Where are today's town criers? How might we create a public call on ideas for NHS research. Is social networking, crowd sourcing, the answer? Should we be making better use of engaging the local media?

What questions would you like to see answered? What priorities would you set? How would you spend public money?

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