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In defence of the clinical trial patient: a health research ombudsman?

Over a half a million members of the British public took part in clinical trials through the NIHR Clinical Trials Research Networks in 2010, a 24% increase on the year before.  Those are the Government’s figures, not mine.

Last week’s ‘life sciences’ announcement included a range of measures to increase patient recruitment to trials.  These include reforms of the rules governing the use of patient data for research purposes as well as other initiatives such as the next phase of development for the UK Clinical Trials Gateway. 

Thus far the hoped for increase in clinical trial participation has been viewed only from the research standpoint but with a glance towards distant outcomes of patient benefit as a raison d’etre.  But we also need to turn our mind to how we provide appropriate help and support to these growing numbers of patients.  It is often said that people on trials receive better care and show better outcomes than if they were not?  The evidence is better for the former than the latter but still not that robust.

Talking to patients will reveal many positives in terms of their experience of being on a trial.  But concerns and issues do arise, such as the lack of follow-up or feedback after a trial ends.  Sometimes things will go wrong; the incident at Northwick Park several years ago being being an example.  Looking back on that report now, it is interesting to note that not one of the recommendations really relates to the patients themselves and the learnings we might take from it.

To whom and how a patient can raise concerns is a difficult one to answer succintly and simply.  To the clinican, the clinical trial nurse, the NHS?  All of the above, most surely but perhaps it is not enough particularly if things go seriously wrong.

There then seems to be a bewildering array of organisations who you could turn to.  Some of these might have an interest in your concern but have no license to act or ability to investigate from a patient perspective.  Those that you would think would be interested – such as the National Patient Safety Agency (NPSA) – will signpost you elsewhere.  Looking to the future the new Health Research Authority (HRA) will have a duty to ‘promote and protect’ the public interest but  it’s capacity and capability to fulfil this, will only reach as far as systems and governance I feel.

I wonder whether there is a case for an independent Health Research Ombudsman to investigate matters when things go wrong from a patient perspective, or whether this should be included as part of the brief of the current Health Ombudsman?  The same rules might apply in that one would have to show that you had exhausted other routes or that the complaint had been handled unsatsifactorily.  But it could be an important route to recourse where currently there seems none.  It would also help to improve the evidence base around the patient experience of clinical trials – the Health Ombudsman’s annual report is often quite influential.

Given that the changes being mutedto make everyone a ‘research patient’ require amendment to the NHS Constitution, now might be an opportune time to consider whether it would be in keeping with this change to have a ‘supreme court’ type body of the sort above to protect people’s rights.  No, to ensure that people are receiving the very best care.

 

 

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.

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