The presentation by Graham Steel is available on Prezi: Patients Anticipate and Simon Denegri has described his talk in a blog post.

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

The Biographies for all of the speakers at the Patients Participate Workshop are as follows:

Dr Liz Lyon is Director of UKOLN, University of Bath, and Associate Director, Digital Curation Centre. She is author of major direction-setting Reports: Open Science at Web-Scale: Optimising Participation and Predictive Potential (2009), Scaling Up (2008) and Dealing with Data (2007), and has led pioneering research data management projects: eBank, eCrystals Federation, Infrastructure for Integration in Structural Sciences (I2S2) and SageCite. She has a PhD in cellular biochemistry.

Dr Lee-Ann Coleman joined the British Library in 2007 to take up the post of Head of Scientific, Technical and Medical Information. For ten years prior to that, she worked in science policy and administration, and gained experience in the funding, university and medical research charity sectors. She has a PhD from the University of Western Australia where she studied the development of the visual system and completed postdoctoral research in the United States and at Oxford before moving into scientific administration.

Dr Sara Ellis is communications manager at the Association of Medical Research Charities (AMRC) where she supports the team on print, online and media communications. Sara has a PhD in biochemistry from the University of Bristol and spent seven years in the lab as a researcher before crossing over into the charity sector. Sara hates jargon, although sometimes is guilty of it, loves clear communication and is particularly interested in social media.

Professor Melanie Welham started her scientific career as an undergraduate in Biochemistry at Imperial College, London and moved to the Imperial Cancer Research Fund for her PhD. After several years of post-doctoral research at The Biomedical Research Centre, University of British Columbia, in Vancouver, Canada, Melanie was appointed to a Lectureship in the Department of Pharmacy and Pharmacology, University of Bath, where she is now Professor of Molecular Signalling and co-Director of the University’s Centre for Regenerative Medicine. She leads a team of researchers whose focus is on investigating the behaviour and biology of stem cells, work initiated during her time as a BBSRC Research Development Fellowship (2003-2006). In her alternate career, Melanie cares for two daughters, a husband and three guinea pigs!

Graham Steel has been actively involved in Patient Advocacy work in his spare time since 2001. Graham acted as Vice-Chairman for a UK Charity, the Human BSE Foundation 2001 – 2005 and then as Information Resource Manager for the CJD International Support Alliance (CJDISA) 2005 – 2007. More recently, his activities have been focused mainly on Neurodegenerative conditions such as Motor Neurone Disease. He is also involved in advocating for Open Access/Science/Data and acts in advisory capacities to the Open Knowledge Foundation, the Public Library of Science (PLoS) and most recently, Digital Science.

Simon Denegri is chief executive of Ovarian Cancer Action. Before taking up this appointment in June 2011, he spent five years as chief executive of the Association of Medical Research Priorities (AMRC). Simon was appointed chair of INVOLVE – the national advisory group for the promotion and support of public involvement – in May 2011.  He is also a member of the National Institute for Health Research (NIHR) Advisory Board, the NIHR Strategy Board and the UK Clinical Research Collaboration (UKCRC) Board. He has written and spoken extensively on issues concerning medical and health research policy and practice and writes a popular blog on the world of medical research, charities, public engagement and involvement: http://simondenegri.com/

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.