Back to articles list

Some background to the Patients Participate! project and where it's going


So, just what is the Patients Participate! project, how did it come about, and where is it going?

The project was commissioned by JISC in 2011 and “...carried out by the Association of Medical Research Charities, the British Library and UKOLN, Patients Participate! asked patients, the public, medical research charities and the research community, ‘How can we work together in making sense of scientific literature, to truly open up research findings for everyone who is interested?’ The answer came from patients who explained that they want easy-to-understand, evidence-based information relating to biomedical and health research.

Every day people are bombarded by health news, advice columns, medical websites and health products and making sense of this information can be difficult. Tracey Brown, Director of Sense about Science says, ’We have been working with scientists and the public for some years to challenge misinformation, whether about the age of the earth, the causes of cancer, wifi radiation or homeopathy for malaria’ ".

From the about section of the Patients Participate! project:

“Patients Participate! will investigate the potential of crowd-sourced ’lay summaries’, derived from UK PubMed Central content, to enable patients to better understand research. Having free access to the scientific literature enables patients to participate in the research process but, in practice, they tend to be overwhelmed by the volume and complexity of the literature. Whilst many medical research charities provide lay summaries, evidence suggests that academics struggle to describe their work in a way that is accessible to all. The feasibility study will gather stakeholder requirements, run a community consultation Workshop, assess usability of existing citizen science platforms and develop three Citizen-Patient Use Cases".

Back in June 2011, there was a one day workshop held at the British Library relating to the project. Details of the schedule can be found here, go here for links to the speakers presentations, and a good write of the day can be found here. Please also see this page on the British Library’s website.

On July 3rd this year, a new post was added to the Patients Participate! blog entitled “Invitation to comment". As mentioned in that post, the project released two deliverables in draft form in the shape of a guide to writing Lay Summaries and a Briefing Paper on Citizen Science. Both were released using A.nnotate which supports interactive commenting. It’s encouraging to see progress being made with regards to these deliverables and it will be interesting to see how matters progress from here.

Also worth a mention is the following talk given by Liz Lyon at the workshop in which she discusses the project, citizen science, open science and crowdsourcing activities.

Liz Lyon opening the Patients Participate! Workshop, Jun 2011 from UKOLN on Vimeo.

Comments (2)

  • I can’t imagine focusing long enough to research; much less write this kind of article.  You’ve outdone yourself with this material.  This is great content.  walkfit orthotic

    22/11/2015 10:28    by Mehak Khan

You must be logged in to post comments.


We appreciate all your comments, questions, suggestions or gratitude.


The username or password entered are wrong.

Reset password

Your password will be sent to your registered e-mail address.

Create account

I agree to the Terms & Conditions *