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

  • Vivienne Haines

    Student thesis: Doctoral Thesis

    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 AwardJul 2023
    Original languageEnglish
    SupervisorNiru Mahendran (Supervisor), Sandra HEANEY-MUSTAFA (Supervisor) & Francesco Sofo (Supervisor)

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