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

Take part in a live trial now as part of NIHR’s visit to the British Science Festival #NIHRCOMETtrial

I hope you’ll forgive the fact that what follows is the news release but I am part of the team presenting with Jonathan Sheffield at next week’s British Science Festival and I really couldn’t put it better than this.  The ‘live trial’ is very exciting indeed and the first dip in the water for a concept that we have been bouncing around for some time which I loosely call either ‘Trialwatch’ or ‘TrialInADay’ – using media and new technology to encourage mass participation in studies to answer serious research questions…….

National Institute for Health Research to make debut at British Science Festival with live trial

This September will see the National Institute for Health Research (NIHR)’s debut show at the British Science Festival and the organisation’s first ever live trial.

The British Science Festival is an annual celebration of science, engineering and technology, with over 250 events, activities, exhibitions and trips taking place over six days from Saturday 7 September to Thursday 12 September. The festival, which is hosted by Newcastle this year, will make a big ‘noise’ for science, technology and engineering regionally, nationally and beyond.

This year’s theme is ‘Making Waves’ and is focusing on discoveries, inventions and research that have made an impact on our lives, and more importantly, what will make an impact in future.

The NIHR’s show called “From bench to bedside: how clinical research is making waves in patient care” will take place on Thursday 12 September from 4-5:30pm at Northern Stage, Stage 2 in Newcastle. The show, hosted by Chief Executive of the NIHR Clinical Research Network Jonathan Sheffield, will include the unique opportunity to take part in a piece of live research called The COMET trial which tests reaction speed.

The event is an interactive and fun show aimed at the general public. Alongside the live trial it also includes audience interaction and a piece of original theatre. The event is free to attend and people can book their place online.

People can find out more about The COMET trial which members of the public can also participate in online at: