The International Network for Knowledge about Wellbeing: An experiment in citizen’s epidemiology

1. The International Network for Knowledge about Wellbeing: An experiment in citizen’s epidemiology A. Ali, K.Skinner, A.J. Burls, A. Brice, G. Gyte, J.I. Emparanza, L. Duley • Objectives • The fundamental goal of ThinkWell is for the public to join together to improve health and wellbeing. Specific objectives include: • To undertake health research to an agenda set by the public • To identify important gaps in our knowledge and prioritise further research according to: • the self-identified concerns and values of the public • the potential for health gain • To find, appraise, synthesise and make accessible, scientific evidence on health and well-being issues of most concern or interest to the public • To help people understand what makes research trustworthy and relevant, and make sense of evidence • To undertake primary research, including cohort studies, surveys and randomised controlled trials, into factors affecting well-being, using the internet and mass media Background Public involvement in healthcare and health research is a key objective of national policy in the UK and many other countries. However, there is much debate about the best ways to achieve this. There is also concern that, despite the best policy intentions, practice often lags behind intent and the public are often involved too late in the process. It is important to ensure that the public are not “involved” only in a tokenistic way or only represented by "professional" patients, and patient groups, who are not truly representative of the wider community. • To investigate the methodological issues raised by conducting research using the internet and mass media • To explore the ethical implications of internet research and ensure the ethical soundness of primary research undertaken on the internet Results so far… Therefore, in October 2006, a number of members of the public, health professionals, health researchers and consumers assembled in Birmingham to share a vision of how modern communication technologies could be exploited to establish large, open-access, internet communities that would enhance public input into healthcare, influence the health research agenda and undertake research together. The outcome of the Birmingham meeting was the establishment of The International Network for Knowledge about Wellbeing – ThinkWell. ThinkWell’s mission is: “To improve the health and well-being of citizens across the world by enabling them to make informed decisions about lifestyle, diet and health interventions through public-led health discussions, education and research, using the internet and the mass media as the fundamental tools” • Ongoing Projects • Universities of Leeds, Nottingham and Oxford in collaboration with the NCT: Public involvement in research. An evaluation of whether training and support for maternity service users helps them engage with research • TAMBAHS and University of Birmingham Unit of Genetic Epidemiology:looking at the way in which parents pass characteristic ways of behaving to their twins through their genes • Understanding Risk Tool in collaboration with the HPA • How willing is the public to provide personal data over the internet. (If you would like to participate in this survey please go to http://survey.thinkwell.bham.ac.uk/TakeSurvey.aspx?SurveyID=mlK36m3) The International Network for Knowledge about Wellbeing (ThinkWell) is a new web-based social network catalysed by the ambition to widen public involvement in health improvement and research by harnessing the power of web 2.0 and other emerging Internet technologies.