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Involving Patients in Health Economics Research: “The PACTS Principles”

Author

Listed:
  • Annie Hawton

    (University of Exeter
    University of Exeter)

  • Kate Boddy

    (University of Exeter)

  • Rebecca Kandiyali

    (University of Bristol
    University of Bristol)

  • Lynn Tatnell

    (University of Exeter)

  • Andy Gibson

    (University of the West of England)

  • Elizabeth Goodwin

    (University of Exeter)

Abstract

Discussion of public and patient involvement (PPI) in health economics (HE) research is growing. There is much literature on PPI principles and standards, but little specifically regarding involving patients in HE research. Here, we outline “PACTS”, a set of principles, developed with a PPI group, for considering patient involvement in HE research. Planning: Involvement is best built in to research plans from the outset. This includes setting specific goals for involvement activities, and clearly communicating the background and purpose of involvement. Approach selection: We describe two main approaches to involvement—discussion-based and task-based. Discussion-based approaches are useful for generating broad insights and revealing “unknown unknowns”. Task-based approaches offer a more focused means of shedding light on “known unknowns”. Continuous involvement: Involving patients throughout the research process and across a range of projects helps build expertise for patients and insight for HE researchers. Team building: Meaningful involvement creates a shared sense of ownership of the research and, over time, helps to develop a team ethos, enhancing the positive impacts of involvement. Sensitivity: HE research can be perceived as technical and impersonal. Addressing this requires sensitivity, clarity, and an honest and open approach. There is increased recognition that patient contributors are experts at providing a “lived experience” perspective, in the way that clinicians are experts at providing an overview of conditions and HEs are experts in the methodology of their discipline. We hope these “PACTS Principles” complement existing PPI approaches and provide a useful foundation for health economists considering patient involvement.

Suggested Citation

  • Annie Hawton & Kate Boddy & Rebecca Kandiyali & Lynn Tatnell & Andy Gibson & Elizabeth Goodwin, 2021. "Involving Patients in Health Economics Research: “The PACTS Principles”," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 14(4), pages 429-434, July.
    • Handle: RePEc:spr:patien:v:14:y:2021:i:4:d:10.1007_s40271-020-00461-4
    DOI: 10.1007/s40271-020-00461-4
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    References listed on IDEAS

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    1. Rebecca Kandiyali & Annie Hawton & Christie Cabral & Julie Mytton & Valerie Shilling & Christopher Morris & Jenny Ingram, 2019. "Working with Patients and Members of the Public: Informing Health Economics in Child Health Research," PharmacoEconomics - Open, Springer, vol. 3(2), pages 133-141, June.
    2. Elizabeth Goodwin & Kate Boddy & Lynn Tatnell & Annie Hawton, 2018. "Involving Members of the Public in Health Economics Research: Insights from Selecting Health States for Valuation to Estimate Quality-Adjusted Life-Year (QALY) Weights," Applied Health Economics and Health Policy, Springer, vol. 16(2), pages 187-194, April.
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    Cited by:

    1. Don Husereau & Michael Drummond & Federico Augustovski & Esther Bekker-Grob & Andrew H. Briggs & Chris Carswell & Lisa Caulley & Nathorn Chaiyakunapruk & Dan Greenberg & Elizabeth Loder & Josephine Ma, 2022. "Consolidated Health Economic Evaluation Reporting Standards 2022 (CHEERS 2022) Statement: Updated Reporting Guidance for Health Economic Evaluations," PharmacoEconomics, Springer, vol. 40(6), pages 601-609, June.
    2. Goodwin, Elizabeth & Davey, Antoinette & Green, Colin & Hawton, Annie, 2021. "What drives differences in preferences for health states between patients and the public? A qualitative investigation of respondents’ thought processes," Social Science & Medicine, Elsevier, vol. 282(C).

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