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Valuing patient engagement: Reflexive learning in evidence generation practices for health technology assessment

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  • Gunn, Callum J.
  • Bertelsen, Neil
  • Regeer, Barbara J.
  • Schuitmaker-Warnaar, Tjerk Jan

Abstract

Much attention in health technology assessment (HTA), a health system governance mechanism used for determining the value of health technologies, is being paid to improving the quality and patient-relevance of the evidence used in assessment pratices. Whilst the direct involvement of patient actors throughout HTA processes has become a more routine element of institutional practice, the ‘impacts’ of patient engagement (PE) initiatives have proven difficult to determine and enhance. In reflexive governance theories, reflexive learning is a critical mechanism of multi-stakeholder arrangements that better handles the complexities of technologies and how they are understood through governance practices. This paper explores how reflexive learning can be used to build a richer conceptualisation of PE in HTA, in order to generate suggestions for enhancing PE practices and their impact. We critically apply reflexive learning insights on qualitative data derived from the co-creation process of a PE evaluation framework, organised through an EU project focused on strengthening PE practices across medicines development (2018–2020), including 24 interactive case studies, 3 multi-stakeholder workshops, and our observations throughout the project. The findings characterise two dimensions of reflexive learning in PE: First, reflexive learning refers to the adaptive reorganisation of evidence generating practices, including the revision of medicines' evaluation criteria and the conditions under which evidence ‘relevant’ to HTA is constructed. Second, reflexive learning spotlights the sociopolitics which shape technology evaluation. Four themes affecting meaningful and sustained PE in medicines development were analysed: institutional boundaries due to established evaluation criteria; timing of engagements; network relations between institutional actors; and the politics of patient representation. Extending beyond discrete PE activities and their reported impacts, reflexive forms of learning are crucial to yielding more ‘meaningful’ PE for HTA and medicines development, facilitating a HTA practice that more meaningfully deals with the complexities of medicines evidence generation.

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  • Gunn, Callum J. & Bertelsen, Neil & Regeer, Barbara J. & Schuitmaker-Warnaar, Tjerk Jan, 2021. "Valuing patient engagement: Reflexive learning in evidence generation practices for health technology assessment," Social Science & Medicine, Elsevier, vol. 280(C).
  • Handle: RePEc:eee:socmed:v:280:y:2021:i:c:s0277953621003804
    DOI: 10.1016/j.socscimed.2021.114048
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    References listed on IDEAS

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    1. Helga Nowotny, 2003. "Democratising expertise and socially robust knowledge," Science and Public Policy, Oxford University Press, vol. 30(3), pages 151-156, June.
    2. Davis, Courtney & Abraham, John, 2011. "The socio-political roots of pharmaceutical uncertainty in the evaluation of 'innovative' diabetes drugs in the European Union and the US," Social Science & Medicine, Elsevier, vol. 72(9), pages 1574-1581, May.
    3. Carolyn M. Hendriks & John S. Dryzek & Christian Hunold, 2007. "Turning Up the Heat: Partisanship in Deliberative Innovation," Political Studies, Political Studies Association, vol. 55, pages 362-383, June.
    4. Carolyn M. Hendriks & John S. Dryzek & Christian Hunold, 2007. "Turning Up the Heat: Partisanship in Deliberative Innovation," Political Studies, Political Studies Association, vol. 55(2), pages 362-383, June.
    5. Williams, Tracy & May, Carl & Mair, Frances & Mort, Maggie & Gask, Linda, 2003. "Normative models of health technology assessment and the social production of evidence about telehealth care," Health Policy, Elsevier, vol. 64(1), pages 39-54, April.
    6. Moreira, Tiago, 2011. "Health care rationing in an age of uncertainty: A conceptual model," Social Science & Medicine, Elsevier, vol. 72(8), pages 1333-1341, April.
    7. Steve Rayner, 2003. "Democracy in the age of assessment: Reflections on the roles of expertise and democracy in public-sector decision making," Science and Public Policy, Oxford University Press, vol. 30(3), pages 163-170, June.
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    1. Tjerk Jan Schuitmaker-Warnaar & Callum J. Gunn & Barbara J. Regeer & Jacqueline E. W. Broerse, 2021. "Institutionalizing Reflexivity for Sustainability: Two Cases in Health Care," Sustainability, MDPI, vol. 13(21), pages 1-19, October.

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