Dear David Cameron, being a ‘research patient’ is one thing, it’s being a ‘research citizen’ that interests us more

Wall-to-wall coverage of the Prime Minister’s speech yesterday about life sciences and putting the NHS at the heart of innovation. All a bit frustrating therefore, that the full transcript of his speech is not yet available on the No 10 website as far as I can seen.

The BBC has by far the best overview (I would also recommend Fergus Walsh’s piece in particular).

My eyes nearly popped out of my head when I saw the headline of the former: ‘Everyone to be ‘research patient:’ says Cameron.’

But what if, Prime Minister, I thought, we pushed that further and developed a system in which every patient was in fact considered to be a ‘research citizen,’ regarded as full members of the ‘health research community,’ with clear rights and responsibilities?

That is a more interesting and challenging idea with greater potential for helping the wider life sciences industry.

It requires a culture shift away from simply viewing the NHS through the eyes of researchers (as yesterday’s announcement seemed to do at times) towards a position where we also view matters through the eyes of the patient. And not just as a participant in a trial but as an individual who can shape, inform, develop and disseminate research if given the right access and the right opportunity.

It would also require us to be brave enough to equip patients with the tools to exercise and, dare I say it, make clear choices about research, their data etc? And it requires a concerted effort to change the paternalistic attitudes that are embedded in our health professions and which only serve to disempower patients and restrict their life choices. As many independent commentators have been quoted as saying today, some of the biggest bugs that hold back research and innovation are alive and well in many GP surgeries?

This is demand-side economics at its most basic if you want to look at it like that. But it is just as important as the supply side stuff that was your focus yesterday. I am thinking that it uncannily sounds like the ‘Big Society’ or a patient-centred NHS. No matter, it goes to the heart of yesterday’s plans to boost innovation in the NHS.

4 thoughts on “Dear David Cameron, being a ‘research patient’ is one thing, it’s being a ‘research citizen’ that interests us more

  1. Absolutley we need to revolutionise the way in which research is carried out in the UK. Salford is one of the most deprived areas of the country but even here the residents are overwhlemingly enthusiastic about the citizen scientist project we are launching which quite simply will empower residents to make informed choices about research by giving them the opportunity and confidence to get involved.

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  2. I am as dismayed as anyone about the tactical (and pandering to pharma) nature of what Cameron is proposing and you are right to describe it as notjing more than supply-side ‘innovation.’ My perspective is slightly different from your own in that I believe that building an NHS around the needs (and expectations) of the public and patients is fundementally a DESIGN process. And the NHS doesn’t ‘get’ design.

    So while there will continue to be ‘outbreaks of excellence’ across the whole of the NHS that constitute worthwhile innovation, until the NHS leadership properly understands the concept of ‘demand-led’ (or, in my world, Customer Insight-led) service improvement, it will continue to be led by external forces promoting their wares.

    It is within this far broader context that the opportuntity for patients to engage in their own healthcare management sits. But until the NHS as a ‘system’ starts to think friom the premise that to improve services ‘you start with your customers (deliberate language) – and work backwards’, my sense is that we shall still be here in 10 years time trying to work out why nothing seems to have changed.

    To mis-quote Bill Clinton: ‘It’s the culture, stupid…’

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    1. An excellent point and I couldn’t agree with you more. I might blog more on this later this week because there were one or two parts of the life sciences announcement last week that were clearly heralded as patient-facing and that don’t quite live up their billing because they haven’t been designed with a patient audience in mind. The UK Clinical Trials Gateway App, is a small but good example. Thanks for your comment and please do keep reading. Simon

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