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Crowdsourcing health information

One of the main issues with crowdsourcing is the reliability of the information provided by an often anonymous public. This is particularly the case when dealing with medical and health related information.

Patient Participate!, one of the JISC-funded community collections projects, tackled this problem and brought together the British Library, UKOLN and the Association of Medical Research Charities in a partnership to

explore the potential of developing a useful body of lay information for patients and those interested in biomedical and health research.

The project, which launched on 18 October at the British Library as part of the Talk Science series of events, provided recommendations on further work to be done to look at the mechanisms for involving patients in creating lay summaries, delivering the lay summaries online, sharing information across different organisations and sustaining these activities.

A number of case studies of current crowdsourcing initiatives in this area, which helped the project define its recommendations, were also produced, including:
Cancer Research UK Wikipedia project, where the charity set up the first UK “Wiki Academy” to teach scientists how to edit wikipedia pages relating to their subject area, and how to engage with users of the service;
Asthma UK, which has involved patients in their research process and in steering their priorities for funding new research;
EuroStemCell, a multilingual web site to help European citizens make sense of stem cells research and information.

By Paola Marchionni

I work as Digitisation Programme Manager at JISC and am responsible, together with my colleague Alastair Dunning, for the successful delivery of a portfolio of projects that have been funded under the JISC Phase 2 Digitisation programme spanning 2007-2009. In addition, I lead on programme evaluation and programme support activities such as workshops and events, and work closely with the Communications and Marketing team.

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