Nuffield report underlines importance of public participation if people are to trust how their medical records are used for research

The Nuffield Council on Bioethics have today published their report: ‘The collection, linking and use of data in biomedical research and health care: ethical issues’ following months of inquiry by an expert working group Chaired by Professor Martin Richards.  Here’s a copy of the actual report.

There is much coverage in the media already including the Financial Times, The Guardian, Science 2.0, and The Independent.  Given the report makes a number of interesting and sometimes pointed observations on a number of data intitiatives including, the 100k Genome Initiative and Biobank I am sure it will continue to generate a great deal more comment.

The overriding message of the report is pretty clear: public participation in the governance of initiative using data for medical research and health care is essential to building and maintaining public trust.  One of the panel members, Susan Wallace is widely quoted as saying: “Any data project should first take steps to find out how people expect their data to be used and engage with those expectations through a process of continued participation and review.”

The report has an interesting section on participant-led research (Page 146 onwards).  But the key bit of the report is Chapter 5 which looks at ‘Ethical Governance.’  It puts forward four principles for guiding future governance on the use of data including: respect for persons, human rights; participation and accounting for decisions.  It summarises the principle of participation as:

Principle 3 – Participation
The set of expectations about how data will be used (or re-used) in a data initiative, and the appropriate measures and procedures for ensuring that those
expectations are met, should be determined with the participation of people with morally relevant interests. This participation should involve giving and receiving public accounts of the reasons for establishing, conducting and participating in the initiative in a form that is accepted as reasonable by all. Where it is not feasible to engage all those with relevant interests – which will often be the case in practice – the full range of relevant values and interests should nevertheless be fairly represented.

The report has laid down an important and powerful principle here which – alongside the other three – should be a benchmark forr how all data access and sharing is governed and managed.

Some people are not going to like this report, that’s for sure. But, in my view, it’s spot on about public involvement being essential to building public trust.

MRC publishes new communications and engagement strategy (plus new film!)

The Medical Research Council (MRC) has published a refreshed communications and engagement strategy.

There is a section on public involvement on P12 of the document which is the fullest narrative I have seen of their corporate intentions around this aspect of working in partnership with the public.

It is a good document and important to have in the public domain. But I wish the public involvement part had a bit more ‘oomph’ in making a stronger commitment to involving the public in strategic and operational decision-making by the MRC. Also that it appeared earlier in the document and as part of the main strategic aims.

That might help to counter the views some people hold that the MRC’s default way of working with the public is to broadcast high quality
information. For the fact is that there are many excellent examples from the root and branch parts of the organisation which demonstrate how its researchers increasingly see what they do as a joint venture with patients and the public.

The MRC Clinical Trials Unit at UCL has, for instance, produced a set of stunning new videos about all aspects of public involvement including this one.

The strategy does these activities a slight disservice by underselling their importance to the overall strategy of the MRC. However, it does mark a degree of progress.

[This post is on the ‘asides’ pages where I tend to post short pieces. My full posts are on the main pages as usual]

Patients hack medical research in planned attack

Hacking in this context is what we call ‘bringing people with different views and skills together to work on problems.’

[Sorry to disappoint the headline chasers but I hope you’ll stay with me]

And ‘hackathons’ – events where such hacking activity can take place – are increasingly common across the health arena as a means of solving problems.

In fact Cancer Research UK did a very successful one recently to design a mobile phone game which would help them analyse gene data.

Well, those extremely creative and clever people at the University of Manchester Centre for Primary Care, supported by the Economic and Social Research Council (ESRC) , the NIHR School for Primary Care Research, NOWGEN and others, are applying the principle to health research.


Members of the public are being invited to pitch ideas to a mixed audience of the public and researchers who will then work on turning them into possible research projects.

In the afternoon they will also be turning their minds to patient and public involvement and some of their thoughts will no doubt find their back to the NIHR Strategic Review of Public Involvement: ‘Breaking Boundaries’ announced last week.  Did I tell you about that?

The bad news is that the ‘Patient Hack Day’ on 30th April is already full up!

The good news is that this is as simple as it gets as an idea and could easily be adopted and adapted around the country.  How about doing one for the ‘Ok to ask’ campaign about clinical research which is running again this year on 20th May?

I had another thought as well.

We now have an excellent methodology in the James Lind Alliance Priority Setting Partnerships (PSPs) for identifying national condition-specific priorities – or rather priorities as defined by patients and clinicians.  But as health research becomes more local in its organisation there seems value in thinking of ways and means to enable priority-setting at a local level as well.  Both in formal and informal ways.  And this ‘Patient Hack Day’ has much to commend it.

Have a good weekend.


Health Research Authority looks for good practice in identifying research participants – survey.

Excuse my laziness but it is Saturday. Here’s a copy of a press release put out by the a Health Research Authority (HRA) on Wednesday about a call (in essence, a survey) they are doing for good practice in identifying potential participants for research studies. The results of the work will be published by HRA in due course.

What it will mean for patients and the public?

Well, I’ll get more on this in the coming week but the statements in paragraph four about consistency, transparency and privacy are the key ones. HRA clearly sees improvements in practice as necessary to ‘protect and promote the public interest.’ And you’ll see the regulator is also asking in the survey for practical examples of public engagement in recruiting people to research.

The survey can be found as a link in the text below but you can also go straight to the new release and survey the HRA website here.

Published on 11 December 2013

The HRA is launching a call for evidence to identify good practice in identifying potential participants in health research.

Building on our remit to protect and promote the interests of patients and the public in health research, we are asking for examples in the areas in which we are directly involved as well as broader successful participation initiatives.

The revisions to the NHS Constitution have committed the health service to recognising and promoting the value of research, and the Health and Social Care Act 2012 placed obligations on NHS organisations to support this. The Caldicott 2 Review report and recent Government response agree that more should be done to increase people’s understanding of the benefits of research and to inform them about how to get involved. The NHS Constitution sets an expectation that, as an NHS patient, you can be asked to participate in research.

The HRA recognises that there is considerable variation in perspective and practice about the ways in which patients and the public are offered opportunities to take part in research. We want to explore the potential for providing clarity for the research community by identifying ethical, practical and efficient models for identification of potential participants. In accordance with our remit to protect and promote the interests of patients and the public in health research, such approaches should be transparent, maintain patient and public confidence in research, and protect the privacy of personal medical information. They should also enable appropriate access to information that will give more patients the opportunity to take part in research.

Our request for information on current practice will help us to identify the need for any further guidance and advice for researchers. People can contribute by completing the brief survey and returning it to by 31 January 2014.

We are interested to hear about the impact of changing recruitment strategies on recruitment and retention rates. We are also particularly keen to hear about examples of patient and public engagement around models of recruitment, and evidence about patient and public expectations relating to the identification of participants.

We will publish the outcome on to enable the research community to benefit from the best ideas in the NHS.

– See more at:

Young people in research have sent me a postcard, have a look….

The Generation R event – organised and delivered by young people in research – has to be one of the highlights of my year.  You can find a write-up from the September event here.

Today the Generation R crew sent me a postcard about what is happening next.

Note the key messages to emerge from the event with respect to the reporting of research results and the involvement of young people in research design and delivery.  The latter chimes with this year’s recommendation in the CMO’s report.  The former is in tune with the #AllTrials campaign.

Really can’t wait to see what these impressive research champions emerge with in the New Year.


GenR key messages