Wednesday 18 May 2016

NIHR @ 10 - a reflection

A great deal has happened in the last 10 years since the setting up of the National Institute for Health Research (NIHR as it often called). The key word is 'for' health research. 

The needs of the public have been placed firmly at the centre. The voices of patients, carers and public have been instrumental in shaping the way it works and it's direction to improve people's health and wellbeing. That is the purpose of involvement. 

It has not been an easy journey and there is still some way to go as Sir Iain Chalmers frequently reminds us and Dame Sally Davies pointed out in her talk. Some said it wouldn't work but many many more have been supportive. 

Yet, it is really is beginning to feel more like a whole organisation and Simon Denegri's report Going the Extra Mile and the new INVOLVE provide me with reasons for optimism. It feels more connected to the NHS and to charities. 

If we remind ourselves of how NIHR adds value in research as set out in 2013

The reasons, from my patient, public perspective are simple...

Questions are relevant - because no one knows better than the person trying to cope with a condition or illness the questions that need to be researched.

Appropriate Research Design, Conduct and Analysis - because  people who use services are able to offer information and knowledge as much as 'experience' to inform and shape research.

Efficient Regulatory and Research Delivery - because people have an expectation of good governance and a right to be informed about research that is of interest.

Accessible Full Report - because if people can't read and understand then the research can't be used to make a difference to their health and wellbeing.

Unbiased and usable reports - because it is for a large part public money taken through taxation, given by donation or raised by actions and activities. 

As Dame Sally Davies says - more research funders need to be reminded of the added value and importance of patients, carers and the public. 

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