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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, UCPHbirgitte.bruun@anthro.ku.dk

The developmentof medicinesbegan with patients’ passive bodies

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- but now

Possibilities and challenges in patient engagement3

1980’s: AIDS activism

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Mario Suriani/Associated Press 1983

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

1990’s: Consumer driven innovation in the development of technology

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http://icph.dk/hvad-er-icph

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

2000’s: User involvement in public health sector

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https://agilepmo.wikispaces.com/User+Involvement

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

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

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?

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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