Patients Participate!

The presentations from the workshop are now available from slideshare. These are in addition to the recording of Liz Lyon opening the event.

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

At the workshop I managed to record the welcome and introduction to the project by Liz Lyon using a Flip camera, and this is now available from vimeo. Warning: there is flash photography which can be seen in the recording.

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/

The project team would like to thank all those who came to the Patients Participate! workshop on Friday 17th June 2011.  We are very encouraged by the level of attendance and engagement during the event.  We are very appreciative of the information and views we have gathered through your input, and we will be producing a report on the outcome as a project deliverable.  In the meantime, here is the collection of tweets from the day as stored on TwapperKeeper.

A sample of the tweets giving a flavour of what some of the participants made of the workshop:

“Thank you @ScienceBL for very informative workshop on Patient Participation #jiscpp.”

“Interesting stuff being tweeted on #jiscpp about helping patients access medical literature. Thanks @JoBrodie for mentioning our approuch”

“Excellent #jiscpp Patients Participate! workshop at British Library Conference Centre today. Will blog later …”

“The excellent discussions from #jiscpp, archived in Tweets by @JoBrodie: http://bit.ly/kWYyhu”

“Have just installed”Hyperwords” http://t.co/Utl0ebC following the demo at#JISCPP”

“Interesting and informative day at Patients Participate! #JISCPP”

A big thank you goes especially to top twitterer Jo Brodie from Diabetes UK.  Jo created a ChirpStory (a tool for creating and sharing stories from Twitter, which had hit 100 views by Monday) and a storify view of the day.  Statistics of the tweets from the workshop have been generated using summarizr and the following screen shot gives an overview of the tweets, as analysed by the summarizr service:

Blog reports are starting to appear, here is a selection.  Let us know if you have written your own blog post and we will add it to the list.

http://inthelandofnewnormal.blogspot.com/2011/06/patients-participate.html – a really good overview of the content of the talks and breakout group exercises.

Simon Denegri has summarised his talk in a blog post Democratising Research. (Simon helped to put the bid together to fund the Patients Participate! project while he was at AMRC, and was one of our closing speakers.) Graham Steel’s presentation is already available on Prezi.

Finally, a thank you to all our speakers  (we will be adding a clip of Liz Lyon opening the workshop in our next post, together with biographies of all the speakers) and congratulations to the British Library, who were in charge of organisation and made everything run smoothly.  Here is a picture of Karen Walshe (from the BL) with Sara Ellis (who spoke on behalf of the AMRC) and our guest speaker giving the patient advocate perspective, Graham Steel (@McDawg)

Karen Walshe, Sara Ellis and Graham Steel before the start of the workshop.

Bridging the Gap between Information Access and Understanding in Health Research

17 June 2011

The British Library Conference Centre

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 like UK PubMed Central which provides free access to scientific peer-reviewed papers.

Having access to the information does not always help patients or the public make sense of scientific research. This workshop will examine ways that 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 to biomedical information access, comprehension, and wider use are. We hope to develop new ideas to enable the opening up of publicly-available, scientific literature to a wider audience.

Twitter: #JISCPP

Workshop Programme

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

12:15 Lunch

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 – Patients Like Me
Simon Denegri – Chief Executive, Ovarian Cancer Action & Chair Involve.

4:30 Close

The Open Science at Web Scale report published by UKOLN in 2009, discussed the possibility of engaging the public in science, by extending the science team to include interested volunteers or amateur scientists or citizens. Citizen Science is a term used for projects in which volunteers, including the general public and enthusiasts, engage in research-related tasks to collect information or participate in research in other ways. As well as increasing the resources available to research and helping to accomplish tasks that might otherwise not have been feasible, citizen science can also become a form of outreach to promote the public understanding of science [1].

The concept of collecting contributions from many individuals to achieve a goal is also called crowdsourcing. While the Open Science report provides examples of how this is happening in science, a New York Times blog post by Tina Rosenberg (Crowdsourcing a Better World) reveals many other ways where crowdsourcing has been applied, with a particular emphasis on contributions that help to bring about social change.

The Patients Participate! project brings together all of these three elements of citizen science:
- engaging patients with the researcher / academic community to produce interpretations of research that are friendly to patients (lay summaries),
- improving understanding of science by making research more accessible to lay people, and
- contributing to society by making sure that the information produced by researchers reaches those who have the most interest in the application of research results in health and medicine (ie patients), in a form that they can understand.

UKOLN is a centre of expertise in digital information management based at the University of Bath, UK, providing advice and services to the library, information, and education communities. We help to influence policy and inform practice, promote community-building and raise awareness, build innovative systems and act as an agent to transfer knowledge. We also undertake some research and development. We have worked with academics in higher education in areas as diverse as managing their research data and making their publications openly available through databases based at their institutions (called repositories) and have provided advice on how to use technologies like twitter to enhance participation in events. UKOLN is funded by the UK Joint Information Systems Committee (JISC) as well as project funding. JISC are funding the Patients Participate! Project.

Besides providing project management, in this particular project we are interested in investigating the potential for crowdsourcing to be applied to making information produced by researchers more accessible to the general public and particularly patients. We will be evaluating the software platforms (i.e. the tools) that are used in citizen science, asking questions about how they work and thinking about ways in which they could be used in the production of lay summaries. We will be working with academics to produce guidelines so that academics are better equipped to participate in citizen science initiatives that involve working with patients. Our health and medicine focus area is associated with stem cell research, and we will be working with academic colleagues in the Centre for Regenerative Medicine at the University of Bath.

[1] http://en.wikipedia.org/wiki/Citizen_science

Liz Lyon

Liz Lyon is Director of UKOLN and Associate Director, Digital Curation Centre.

Monica Duke

Monica Duke is project manager for Patients Participate! and also provides some research effort.

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.

Hello and welcome. The patients Participate! project will be using this blog to announce project news and discuss items of relevance to the project. We hope that you will find it interesting to follow and that you will be able to feed back to our project through the comments on the blog. To learn more about the project please check out the about page.