Giving a Voice to Marginalised Groups for Health Care Decision Making
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COMMENTARY
Giving a Voice to Marginalised Groups for Health Care Decision Making Richard De Abreu Lourenço1 · Nancy Devlin2 · Kirsten Howard3 · Jason J. Ong4,5 · Julie Ratcliffe6 · Jo Watson7 · Esther Willing8 · Elisabeth Huynh9 Accepted: 8 September 2020 © Springer Nature Switzerland AG 2020
1 Introduction Internationally, there is broader inclusion of the consumer voice in decisions about healthcare resource allocation; initiatives like the Strategy for Patient-Oriented Research (SPOR) in Canada and INVOLVE in the UK focus on expanded consumer representation in forming and enacting health policy [1, 2]. In part, the success of these initiatives will depend on inclusive representation. Representation reflects both who is given a voice and whose preferences are captured in health care decision making and policy setting [3–5]. For marginalised groups (those who are socially excluded, find it difficult to be heard or who researchers struggle to reach), achieving representation is a challenge. Challenges arise in asking the right people the right questions and doing so in a manner that reflects and captures their values.
Giving voice to the preferences of marginalised groups was the theme of a half-day symposium at the 11th International Academy of Health Preference Research (IAHPR) meeting in New Zealand, 2019. Using case studies and a panel discussion, four presenters and three consumer representatives discussed how health preference research can give voice to marginalised groups for health care decision making, with case studies focusing on three marginalised groups: adolescents and young adults [AYA]; lesbian, gay, bisexual, transgender, queer and others [LGBTQ+]; and members of Indigenous populations. Symposium sessions were organised around the following questions: whose preferences are being captured; are current approaches to preference research suitable for marginalised groups; and how do we better capture the voice of the marginalised group? In this paper we provide an overview of key discussion points from the symposium and identify areas for ongoing investigation.
This symposium was conducted under the title ‘Giving a voice to marginalised groups for health care reform’; in developing these proceedings it was agreed that the term ‘health care decision making’ better reflected the contents of the day. This article is part of the topical collection on “From the International Academy of Health Preference Research”. * Richard De Abreu Lourenço [email protected] 1
Centre for Health Economics Research and Evaluation, University of Technology Sydney, Sydney, NSW, Australia
2
Health Economics Unit, Melbourne School of Population and Global Health, University of Melbourne, Melbourne, VIC, Australia
3
Sydney School of Public Health, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia
4
Central Clinical School, Monash University, Melbourne, VIC, Australia
5
Department of Clinical Research and Development, London School of Hygiene and Tropical Medicine
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