In a blog ‘exclusive’ – albeit more by technical chance than design – I am today sharing with you the independent report of the AMRC/INVOLVE patient workshop on health research regulation that took part in early November.
We were invited to undertake this important piece of work by the Academy of Medical Sciences (AMS) as part of its review of the regulation and governance of medical research regulation which will report in the New Year. I say important, not just because of the opportunity it represented to feed the patient view into the Academy’s work, but because it also adds to the evidence base on patient attitudes towards research regulation.
You can read the full report by clicking on the health research regulation page tag at the top of the page or by clicking here. The key messages of the report are as follows:
- Patients should be able to expect a National Health Service (NHS) in which research is seen as integral to the delivery of quality care
- Generating a national ambition and appetite for research should be seen as a whole system responsibility of the NHS, those who work in it and patients
- Patients should be placed at the centre of research and given a pivotal role in the shaping, conduct and scrutiny of health research activity and its regulation and governance
- Creating trust is key in engaging with patients and making them feel confident to participate in research
- Good communications and professional attitudes are fundamental to creating the right culture for research including issues around consent
- Regulation and governance should support and remove barriers to – not hinder – patient participation and involvement in health research
- Public involvement in the regulation and governance of research must be robust, well-informed and properly resourced
- Any move towards a single regulator must not be at the loss of expertise and experience that has been built-up within the existing regulatory system.
In the days after the event I recall thinking how the workshop so clearly dispelled the myth that persists in some quarters that patients and the public do not care about, are unable to grapple with, such issues as health research regulation or that they will approach them from an ‘anti-research’ perspective. This is certainly not borne out by the evidence of our workshop.
In fact, you could argue that they set the bar higher than, for instance, health professionals in their expectation of what the NHS should be delivering in the name of research and how it engages with patients who might benefit from involvement. But, quite rightly, part of the deal (my words) they expect from this is a demonstrable commitment to ensuring that they have a say in how the system works. The mutual benefit is a more effective system of regulating research and one that is laid on a foundation of public trust and confidence.
I know that some of my colleagues in patient and public involvement feel a little cynical that the arguments conveyed in the workshop report will be taken on board in the debate about regulation. Ever the optimist, I feel they will be – although perhaps not all in one go. But, if not, then we must continue to make the case outlined in our report.
The report will go up on the AMRC and INVOLVE websites in the next 24-48 hours.
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