What do patients think about the regulation and governance of medical research?

Posted on December 21, 2010 by


As part of the Academy of Medical Sciences ongoing review of the regulation and governance of medical research, we held a workshop to find out what patients thought. We’ve just published a report summarising this. It includes how people feel about a few issues we talk about a lot; their data being used for research, how they want to be involved in research when they are being treated by the NHS etc. Handy as an evidence base to support some of our work.


In March 2010, the Academy of Medical Sciences was asked by government to conduct an independent review of the regulation and governance of medical research in the UK. As part of the review, the Academy were keen to get the perspective from patients on what this should look like, how patients should be involved in the system etc.

So AMRC and INVOLVE (an organisation focused on supporting public participation) set up a workshop bringing patients and people with experience of public involvement in research together to bash out some of their thoughts.

This report is a summary of this workshop and some of its findings. You can read the whole report here

What does the report say?

The workshop scrutinised a set of four proposed principles for how a regulation and govenance framework should look. They then focused on three areas, the culture of research, the use of patient data and tissue for research purposes and patient and public involvement in the regulation of medical research.

The report details these discussions, drawing out some of the key themes which came from them and including lots of quotes directly from the participants.

Big themes that came out were:

  • the huge role research plays in the NHS, that this is valuable and we should all know about it. (a particularly fabulous quote suggests “It should be called the National Health and Research Service – not just health”.)
  • That good communication is vital, to doing research better, getting people involved etc.
  • And that patients do want a say in how research is regulated – they want to have confidence in the system; they value the expertise that is there.

The headlines are:

  • 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.

And Simon Denegri – Chief Exec of AMRC – has blogged about this report with a few reflections.

What now?

The Academy will take these views into account as they complete their review – it is due to report early in the new year.

This report will be a useful resource as it gives us evidence of what patients and the public think about some key issues in medical research, how their data is used (something the government is consulting on at the moment as they develop their proposed “Information Revolution” for how data is collected and managed in the NHS) and how research is regulated. Although, as the report concludes, “there is no doubt that the evidence base in this area needs to be strengthened”.

Posted in: Policy