Patients Participate!

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.