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POSSIBILITIES AND CHALLENGES IN PATIENT ENGAGEMENT
Workshop on the Future Directions in Regulatory Science,
21. april 2016, University of Copenhagen
Birgitte Bruun, Department of Anthropology, [email protected]
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The developmentof medicinesbegan with patients’ passive bodies
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- but now
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Possibilities and challenges in patient engagement3
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1980’s: AIDS activism
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Mario Suriani/Associated Press 1983
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Patient - expert
• Patients’ experience with their condition is now relevant knowledge
• Expert-patients may blur the distinctionbetween patient and health professional
CHALLENGE for regulators: Which role dominatesand how is it made legitimate?
Possibilities and challenges in patient engagement5
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1990’s: Consumer driven innovation in the development of technology
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http://icph.dk/hvad-er-icph
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Consumer - data supplier
• Consumers are invited into earliest phases of product development
• Patients can be consumers in collaboration with industry
• Consumers produce data
CHALLENGE for regulators: How far into the engineof product development are patients/consumerswelcome?
Possibilities and challenges in patient engagement7
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2000’s: User involvement in public health sector
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https://agilepmo.wikispaces.com/User+Involvement
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Citizen - user
• Patients become empowered citizens and users
• Citizens join in decision making and knowledge is democratized
• Users are given a choice and therebyresponsibility
CHALLENGE for regulators: To what degree doesinvolvement lead to influence? In which areas?
Possibilities and challenges in patient engagement9
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Possibilities
• AIDS activists: Patient-experts may influence medical research at all stages
• Userdriven innovation: Patient-consumers maybe incorporated into product development
• User involvement in public health sector: Moral value of patient/user involvement
Possibilities and challenges in patient engagement10
Which role dominates and how is it made legitimate?
How far into the engine are patients/consumers welcome?
To what degree does involvement lead to influence?
- and challenges
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Possibilities and challenges in patient engagement11
Patientengagement
Patients as stakeholders - but how?
Product
Technology Knowledge
Process
CitizenConsumer
Data supplier
Expert
User
Patient
Activist
Leader?Partner?
Owner?
Body?
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Thank you for your attention!
AcknowledgmentsNiels Westergaard, Biopeople
Grete Brorholt, KORA
Dorte Brogaard Kristensen, Dept. for Marketing and Management, USD
Simon Westergaard Lex, Dept. of Anthropology, UCPH
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More inspiration for collaboration with patients• INVOLVE, UK (National Institute for Health Research)
• James Lind Alliance, UK
• Silent Spring Institute, USA (focus on environment and breast cancer)
READ MORE
• Britten, Nicky, Sarah Denford, Faith Harris-Golesworthy, Steph Jibson, Nigel Pyart, and Ken Stein. 2015. "Patient involvement in drug licensing: A case study." Social Science & Medicine131:289-296. doi: http://dx.doi.org/10.1016/j.socscimed.2014.10.024.
• Caron-Flinterman, J. Francisca, Jacqueline E. W. Broerse, and Joske F. G. Bunders. 2005. "The experiential knowledge of patients: a new resource for biomedical research?" Social Science & Medicine 60 (11):2575-2584. doi: http://dx.doi.org/10.1016/j.socscimed.2004.11.023.
• Epstein, Steven. 1996. Impure Science. AIDS, Activism and the Politics of Knowledge. Berkeley: University of California Press.
• Gauvin, Francois-Pierre, Julia Abelson, Mita Giacomini, John Eyles, and John N. Lavis. 2010. "“It all depends”: Conceptualizing public involvement in the context of health technology assessment agencies." Social Science & Medicine 70 (10):1518-1526. doi: http://dx.doi.org/10.1016/j.socscimed.2010.01.036.
• Thompson, Jill, Paul Bissell, Cindy Cooper, Chris J Armitage, and Rosemary Barber. 2012. "Credibility and the ‘professionalized’ lay expert: Reflections on the dilemmas and opportunities of public involvement in health research." Health: 16 (6):602-618. doi: 10.1177/1363459312441008.
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