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Should patients tell researchers what to do? If so, How

Should patients tell researchers what to do? If so, How. ThinkWell – Putting the public at the heart of research Amanda Burls. T h e I nternational N etwork for K nowledge about W e l l being. - an experiment in citizen’s epidemiology. AIM.

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Should patients tell researchers what to do? If so, How

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  1. Should patients tell researchers what to do? If so, How ThinkWell – Putting the public at the heart of research Amanda Burls

  2. The International Network for Knowledge about Wellbeing

  3. - an experiment in citizen’s epidemiology AIM “to improve the health and wellbeing 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”

  4. Why? • Current patient involvement poor • Lack of patient perspective to inform research synthesis • Distortion of research agenda (should address questions of importance to the public and patients) • Vast untapped potential

  5. Fundamental concept • To build a large cohort of citizens who identify their information needs, prioritise their research interests, participate in the design of studies, freely provide data via the internet and who are followed up through to death or loss to follow up

  6. Objectives (2006 meeting) • To undertake health research to an agenda set by the public. • To identify important gaps in our knowledge • To make accessible, scientific evidence on health and well-being • To help people understand what makes research trustworthy 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. • To investigate the methodological issues raised by conducting research using the internet and mass media. • To explore the ethical implications of internet research • To involve the public and participants in the design of studies

  7. Activities: • Observational research • Experimental research • Enabling informed health decisions • Decision tools • Educational activities • Provision of information • Online communities • Public-led research

  8. Observational research Surveys Cohort studies Discussion forums

  9. Experimental research • Randomised controlled trials • Methodological research

  10. Activities to date…

  11. TAMBAH • Initiated by a patient group – The Twins and Multiple Births Association (TAMBA) • Looking at question of heritability/genetics • Led by Maurice Zeegers, Professor of Genetic Epidemiology, University of Birmingham

  12. Experimental research • Risk communication trial • Maintenance of weight loss trial • Mattress trial • Selenium for the prevention of cancer trial • (Moderate alcohol consumption – DrinkWell)

  13. Experimental research • Risk communication trial • Maintenance of weight loss trial • Mattress trial • Selenium for the prevention of cancer trial • (Moderate alcohol consumption – DrinkWell)

  14. Risk communication tool • Application to Wellcome Activities programme last November – rejected • Members of the HPA have expressed an interest…

  15. Experimental research • Risk communication trial • Maintenance of weight loss trial - rejected • Mattress trial • Selenium for the prevention of cancer trial • (Moderate alcohol consumption – DrinkWell)

  16. Experimental research • Risk communication trial • Maintenance of weight loss trial • Mattress trial – protocol in preparation • Selenium for the prevention of cancer trial • (Moderate alcohol consumption – DrinkWell)

  17. Experimental research • Risk communication trial • Maintenance of weight loss trial • Mattress trial • Selenium for the prevention of cancer trial • (Moderate alcohol consumption – DrinkWell)

  18. Proposed PRECISE pilot trial • Mirrors original pilot • Spit and toe nails • N=500 • Qualitative study to compare participant experience

  19. Age distribution of alcohol snowball survey

  20. What do you think? Please discuss

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