UK public involvement in research standards launched today – seeing the wood and the trees. #PatientsFirst2018

Today, the National Institute for Health Research (NIHR), Chief Scientist Scotland, Health and Care Research Wales and the Public Health Agency Northern Ireland, launch UK-wide standards for public involvement in health research. You can find them here:

Building on INVOLVE’s values and principles for public involvement published several years ago, the standards have been developed collaboratively with patients and the public, researchers and others over the last 18 months. The exercise include a public consultation last summer to which almost 700 people responded.

And the work goes on. Today the standards collaboration is also announcing ten ‘test beds’ – organisations who have been successful in their application to try out the standards over the next year:

If you missed out on the chance to apply to be a test bed or were not successful with your application, don’t worry you can still be a ‘freestyler’ – working to the standards and providing feedback as you go along:

The standards will help organisations and the public contributors who work with them, define what good looks like in the context of public involvement in research.

But i think the standards signify something else about the evolution of public involvement in the UK. That we are now influencing a whole health research system – not just single or groups of organisations – to orientate itself around the priorities and interests of patients and carers.

Just take a look at the test beds. They are not what you might have expected. They are not the usual ‘NIHR suspects.’ They include research groups, a research register, universities and Royal Colleges. They cover all four nations. They include basic science and social care research. From maternity care to end-of-life.

Of course, there are great variations in application and practice. Some organisations are so far behind others they look like the dinosaurs of medical research. Nor can we say that public involvement is embedded or fully integrated in everything that happens across health research. Of course not. But these standards are a further milestone towards making that happen.

In time they will give patients, carers, the public, researchers and chief executives a way in which they can feed back, measure what is going on and see how their organisation is performing relative to others. They will provide a tool for reflection and a path for continuous improvement. They will unify us but enable us to celebrate the differences.

They will help us see the wood and the trees.

Note: the standards are being given their first airing in their current form at today’s Patients First conference being hosted in London by AMRC and ABPI.

[My thanks to all those who have contributed to the standards and particularly the steering group who have made it happen]

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