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Patients Participate!

Patients Participate! was a JISC-funded project, awarded to The British Library’s Science team, the Association of Medical Research Charities and UKOLN. The seven-month feasibility study looked at ways to make sense of scientific literature for patients, the public and anyone interested in biomedical and health research.

Through initiatives such as Europe PubMed Central, the British Library works in partnership to address some of the barriers to accessing biomedical information. Now, anyone with a computer and an internet connection is able to search for and download biomedical and health research publications at no cost. Providing access to information is, however, only the first part of the story; enabling understanding is equally crucial.

The Patients Participate! workshop was held at the British Library in June 2011; here we asked the question: ‘How can we work together in making sense of scientific literature, to truly open up research findings for everyone who is interested?’

Patients told us they want easy-to-understand, evidence-based information relating to biomedical and health research, in the form of plain English summaries. Meanwhile, scientific researchers often find it challenging to communicate complex scientific information to the public in an accessible and engaging way.

The project recommended publishing a lay summary alongside every UKPMC article. To explore how researchers could be supported to achieve this, we interviewed representatives of organisations who currently produce easy-to-understand information on biomedical research for the public, and asked how they do it.

The project produced a set of reports and case studies which give insights into best practice in producing plain English summaries of research and guidance for those starting out. The following are available for download (from the panel on the right):

You can view a video of our launch event on YouTube:


Patients Participate! was funded by the JISC eContent programme 2011

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