Patients Participate! Bridging the gap between information access and understanding

Commissioned by Jisc 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.

"It's often very effective but no sooner is attention turned elsewhere than misleading claims creep back up again. To make a permanent difference, we need the public to be evidence hunters. We are delighted to encourage patients to engage with the evidence for medical claims."

Alastair Dunning digitisation programme manager at Jisc adds, "Jisc believes that publicly-funded research should be made available for everyone and be easy to find. We have funded this work to show how making access to scientific literature enables citizen-patients to participate in the research process, therefore providing mutual understanding and better links between scientists, medic, patients and the general public."

Lee-Ann Coleman, Head of Science, Technology and Medicine, British Library says, "The British Library supports access for everyone who wants to do research, but providing access to information, through services like UK PubMed Central, is only the first part of the story. There is so much scientific literature – and it’s so complicated; developing ways to help people make sense of it has to go hand-in-hand with access."

Engaging with the wider community is increasingly important for researchers. Some universities now offer researchers training in communicating with lay audiences.

Dr Liz Lyon, director of UKOLN, University of Bath explains, "The Patients Participate! Project has demonstrated the potential value of lay summaries to make research more accessible to a wider audience. There is certainly an appetite for this information and we see the new How-to Guide for researchers as a positive step in helping academics and researchers to communicate their findings and to bridge the understanding gap."

Medical research charities have an important role in providing patients and the public with information about the research they fund.

Lord Willis of Knaresborough, chair of the Association of Medical Research Charities (AMRC) believes that the "Increasing volume of information about health and medical research available via the internet, the challenge for charities is to help their supporters make sense of it and distinguish the good from the bad. By translating complicated medical research information into language that is easy to understand, they can help researchers and patients talk to each other."

Find out more about why Patients Participate! is part of Jisc's econtent programme