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Patients Participate! Workshop on Bridging the Gap between Information Access and Understanding in Health Research

Patients Participate! logo

The Patients Participate! Project, led by UKOLN in collaboration with the British Library and the Association of Medical Research Charities is holding a workshop on bridging the gap between information access and understanding in health research on Friday 17 June 2011 (10.30 - 16.30) at the British Library Conference Centre, London. (See below for details on how to book and reaching the venue.)

The workshop provides a mixture of presentations, with guest speakers Graham Steel (PatientsLikeMe) and Simon Denegri (Chief Executive, Ovarian Cancer Action, and Chair, Involve), and audience participation, with an emphasis on making the day highly interactive. We will welcome participants' input and hope to learn from their experiences through an afternoon of workshops.

The Workshop programme is now available from the Patients Participate! blog.

We now have more access than ever to scientific papers and summaries of biomedical and health research. Anyone with a computer and an Internet connection can read the latest research results due to initiatives such as UK PubMed Central which provides free access to scientific peer-reviewed papers.

However, having access to the information does not always help patients or the public make sense of scientific research. This workshop will examine ways in which we might address the gap, through the development of 'community content' and the application of Web technologies that might help people to make sense of the science.

We want to bring together people from different communities - patients, carers, researchers, charities and technologists - to explore what the motivations, challenges and barriers are as regards biomedical information access, comprehension and wider use. We hope to develop new ideas that will help to open up publicly available scientific literature to a wider audience. The workshop groups will explore what role Web-based, biomedical information resources, technologies and communities can play in translating emerging research findings into plain English so that all those interested are able to access, understand and trust biomedical and health information.

To help focus discussion, the broad and topical theme of stem cell research will be used.

The discussion groups will be asked to share their views on what they like and dislike across a range of resources, whether it be the way the information is presented, ease of use of the technology, or any other factors. Discussion will be structured around a set of questions and scenarios designed to further understanding. The questions are:

  1. What motivates different types of user to look for biomedical information and to revisit one information resource over another?
  2. What are the barriers - perceived or real - to online access to biomedical information?
  3. What are the key factors in the way biomedical information is presented that facilitate easy comprehension by a range of people?
  4. What are the types of Web technologies that help people find and use biomedical information for their own specific purposes? What benefits have emerged from using online media?
  5. What is the potential for particular communities, for example, patients or carers, to make use of biomedical information already available online to support better and wider understanding of current collective knowledge?
  6. How could the different communities work together e.g., patients, charities and researchers, to support access and facilitate translation of biomedical information?

Through this workshop we aim to produce a set of simple best-practice recommendations on how best to leverage different communities and tools to enhance the communication of biomedical research. A key output will be a set of Citizen-Patient case studies documenting approaches to promote online engagement, access and community evaluation for non-professionals.

Patients Participate! wordle

How to attend

If you would like to register your interest in attending, please email to Karen Walshe (

Getting to the British Library

Getting to the workshop venue is explained on the British Library Web site, which includes information on the location of the Conference Centre.

The Twitter tag for the day is #JISCPP

Note: You can find latest updates on our home page and previous articles in Feature archive.

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