Finding the voices of people affected by multiple sclerosis in health research: democratising research through improved research practice

Abstract

Health research and policies call for patient engagement at all stages of the research
process. Involving patients and members of the public in research processes enables a focus
on priorities and research outcomes that matter to them. Their lived experiences improve
research relevance, efficiency, transparency and quality. Their involvement also facilitates
translating research outcomes into policy and practice, improving health care outcomes. The
voices of people affected by multiple sclerosis (MS) should be a crucial driving element
across all fields of MS research. Their firsthand experience of the disease and its impact is
critical to research processes. Australia lacks structures and mechanisms to support patients
and relevant stakeholders in health and medical research. The voices of people affected by
MS are missing in setting priorities for health research in Australia and, more broadly, in
current health research.

Date of Award	Jul 2023
Original language	English
Awarding Institution	University of Canberra
Supervisor	Niru Mahendran (Supervisor), Sandra Heaney-Mustafa (Supervisor) & Francesco Sofo (Supervisor)