No research about us, without us

On my way back from the INVOLVE symposium replete with new ideas and fresh energy. Thanks to my fellow symposiastas.

My blog headline is actually a rephrasing of the Government’s mantra about the NHS reforms as expressed by one of our number this morning. I could not have put it better.

The feeling of those present over the past two days is that public involvement in research is an agenda that must be attacked with renewed urgency.

There is a corporatisation and institutionalisation of health research in the UK that will be familiar to many. Four big entities dominate the funding sphere – NIHR, MRC, Wellcome and Cancer Research UK. A wider pool of other organisations such as the Royal Society loom large over science debate.

The degree to which they reflect public concern and priorities rather than established scientific opinion is a matter of debate. That is not meant so much as a criticism as a reminder that we should not hesitate to question or challenge the status quo. It also underlines that others have a responsibility and perhaps greater freedom to think differently. Otherwise science and society are in danger of taking divergent paths somewhere down the line.

I seem to recall Ben Goldacre suggesting some time ago that some health research expenditure should be determined by public opinion. Who knows. Can the public get it any more wrong than the bizarre and sometimes ridiculous stuff that occasionally pops up on the Today programme?

INVOLVE as well as others such as the James Lind Alliance have done well to make this challenge thus far. With considerable success. And we now often share forums and meetings with many of the aforementioned funders. But we must be wary of becoming too institutionalised ourselves.

While we want public involvement to become established practice and thinking in one sense. We also do not want to forget our origins and the value we can bring by being able to step outside of the box or simply make the connections with audiences that others can not or will not make.

In fact what some researchers may fear most could actually be of greatest benefit to their work – a wider social movement not simply interested or engaged in research but fundamental to its pursuance and impact.

If the NHS really is to become patient-centred, a system in which the rule is ‘no decision about us without us’ then it must also look upstream to how the care and treatment of tomorrow is being designed.

‘No research about us, without us’ is not a bad starting point.

One thought on “No research about us, without us

  1. Good points .. And not just ,cause you mention JLA! Becoming institutionalised is my biggest fear .. The problem of salt losing it’s saltiness as another good book says it. Still as long as we know we havnt got it right that means we keep on trying new and different stuff


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