Patients Participate!

The stakeholders for Patients Participate! are spread across different communities: patients, charities, funders of research, researchers and policy makers (among others). The partnership that has been put together to carry out the project reflects the diverse interests that are represented in this project. Although all the organisations involved are household names in their own community, we recognise that they may not be so well known in other disciplines. The first posts in this blog represent a mini-series that we have put together to introduce the different parties, and their interest in the project. Lee-Ann Coleman starts us off by introducing The British Library.

One of the British Library’s strategic priorities is to ‘Enable access to everyone who wants to do research’; this project adds another dimension to the role of an information provider in achieving that aim. The Library has been the lead partner in a consortium delivering UK PubMed Central – the free-to-access archive of biomedical research papers – for the past five years. This service is supported by the eight major funders of biomedical research in the UK, with the intention that the research that they support (either through the tax payer or the donating public) should be available to anyone without the barrier of a further charge to access the information. There are over 2 million journal articles in UKPMC and it provides access to a further 24 million abstracts; all anyone needs is a computer and internet access – and a degree in biomedical science! Even those working in the field struggle to keep up with the volume of new information and if the research area is outside one’s expertise, it can often take significant time and effort to understand the context and the key messages contained within a research article.

So the question is can we involve the public and researchers in making sense of scientific concepts and terminologies to help them to understand the current state of research in specific areas? Stem cell research is an area that has a high profile in the media, with promises of cures for a range of diseases and the possibility of regenerating or replacing tissues and even whole organs. We are looking forward to working with patients, charities and researchers to better understand the barriers to extracting information that is useful to them from scientific papers and assessing the feasibility of building a corpus of quality content that is truly open to all.

Lee-Ann Coleman is Head of Scientific, Technical and Medical Information at the British Library.