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From Passive to Active: Patients as Contributors to Medicinal Product Risk Communication Research

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Communicating about Risks and Safe Use of Medicines

Abstract

Since the 1980s, as a result of the AIDS epidemic, we have witnessed the rise of patient movements that have successfully advocated for the development of new medicines, changes in pharmaceutical legislation and policies and increasing participation in governmental decision-making. Based on the concept of patient-centred healthcare, this chapter discusses that patients can and should be proactive in highlighting their information needs and interests, and come together in patient organisations that may initiate, contribute to or even conduct medicinal product risk communication research. This chapter shares the real life experiences of patient representatives and makes proposals for the future with a global outlook.

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Notes

  1. 1.

    From San Francisco: Bobbi Campbell (1952–1984), Bobby Reynolds (–1987), Dan Turner (1948–1990), Michael Helquist representing his partner Mark Feldman, who had planned to attend but died shortly before the conference; from New York City: Michael Callen (1955–1993), Bob Cecchi (1942–1991), Phil Lanzaratta (–1986), Richard Berkowitz, Bill Burke, Artie Felson, Tom Nasrallah, Matthew Sarner; from Los Angeles: Gar Traynor; Elbert from Kansas City by way of Houston; and one individual from Denver whose name has been forgotten.

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Authors and Affiliations

  1. European Organisation for Rare Diseases (EURORDIS), Paris, France

    François Houÿez

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  1. François Houÿez
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Correspondence to François Houÿez .

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  1. European Medicines Agency (EMA), Amsterdam, Noord-Holland, The Netherlands

    Priya Bahri

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Houÿez, F. (2020). From Passive to Active: Patients as Contributors to Medicinal Product Risk Communication Research. In: Bahri, P. (eds) Communicating about Risks and Safe Use of Medicines. Adis, Singapore. https://doi.org/10.1007/978-981-15-3013-5_16

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  • DOI: https://doi.org/10.1007/978-981-15-3013-5_16

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