This page describes a workshop that was held on 17 June 2011. Further information on the workshop and its outputs (including the workshop report) is available from the deliverables and dissemination sections.
We would like to invite you to take part in a one-day workshop to be held at The British Library Conference Centre, 96 Euston Road, London on Friday 17 June.
The workshop will bring together medical research charities, patients, researchers and information and technology specialists to explore access to biomedical and health research information for patients. We will consider how patients currently access this type of information, the role of researchers and medical research charities in interpreting the science and whether new technologies can be applied to aid the transition from access to understanding.
This will be a highly interactive day, where we will welcome your input and hope to learn from your experiences.
This day is part of a JISC-funded project awarded to UKOLN, The British Library and the Association of Medical Research Charities who want to explore the potential for developing a body of useful literature for patients interested in biomedical research.
The Patients Participate! project aims to:
- engage patients with the research community to produce interpretations of research that are friendly to patients (lay summaries),
- improve public engagement and dialogue between researchers and the public by making research findings more accessible, and
- contribute to society by enabling the information produced by researchers accessible to those who have the most interest in the application of research results in health and medicine (i.e. patients).
If you would like to register your interest in attending please email to Karen Walshe (firstname.lastname@example.org) by 10th June 2011.
10:30 Registration and coffee
11:00 Welcome to the workshop
Liz Lyon (UKOLN, University of Bath) – Patients Participate: Origins and Overview
11:15 Introduction to the project from the project partners
Lee-Ann Coleman (British Library) – Accessing Biomedical and Health Information
Sara Ellis (Association of Medical Research Charities) – Patient Perspectives on Research Findings
Professor Melanie Welham (Centre for Regenerative Medicine, University of Bath) – Communicating Research Beyond Academia
11:45 Assigning workshop groups, brief introductions and setting questions
13:00-3:20 Workshop groups (including afternoon tea break)
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 trust, understand and access biomedical and health information.
To help focus discussions, the broad and topical theme of stem cell research will be used.
The groups will be asked to share their views on what they like and don’t like for a range of resources, whether it be the way the information is presented, ease of use of the technology, or any other factors.
This will be structured around a set of questions and scenarios to help understand:
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 for the way biomedical information is presented that enable 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 eg patients, charities and researchers in enabling access to and facilitating translation of biomedical information?
Through the 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.
3:20 Feedback from workshop groups and Summary Recommendations (Liz Lyon)
Reporting from each workshop group on discussions aligned to 5 questions/recommendations under the broad themes of:
- Motivations and Barriers
- Good and Bad Examples
- Potential for Improving and Collaborating
3:50 Final guest speakers & Q&A
Graham Steel – Patient Advocate
Simon Denegri – Chief Executive, Ovarian Cancer Action & Chair Involve.
The twitter hashtag for the project will be used for the event #JISCPP
Materials and reports from the workshop will be made available and announced on the blog.