1.1: Replay – Health Technology Assessment Policy and Methods Review: Rare Disease Sector

Watch the replay of the webinar below.

PDF Download

Download this companion resource for rare disease organisations/groups.

RVA Partner Organisations/Groups

RVA offers mentoring for RVA Partner organisations/groups that wish to access customised guidance and support: education@rarevoices.org.au


Ann Single – HTA Policy and Methods Review Reference Committee

Ann Single is the Coordinator and an Advisory Committee Member of the Patient Voice Initiative (Australia) and internationally chairs the Health Technology Assessment international (HTAi) Patient and Citizen Involvement Interest Group (known as PCIG) whose 300 multi-stakeholder members in 43 countries work to improve patient involvement in health technology assessment (HTA). Her interest in patient knowledge and how decisions are made about what is funded in health systems began when she directed patient involvement and communication in Scotland’s first HTA body and later established involvement processes for the Scottish Medicines Consortium. She is co-editor of the first book in the field, Patient Involvement in Health Technology Assessment (2017). Ann recently accepted an invitation to serve as a patient representative on the Reference Committee for the Australian Government’s HTA Policy and Methods Review. She was a co-chair of the HTAi Annual Meeting scientific program committee in 2022 and will be a member of this and the Local Organising Committee for HTAi’s Annual Meeting in Adelaide in June 2023.

Jo Watson – Chair, HTA Consumer Consultative Committee

Jo Watson is Deputy Chair of the Pharmaceutical Benefits Advisory Committee (PBAC) and has been a consumer nominee on the PBAC since 2013. In 2021 she was appointed the Deputy Chair of the MBS Review Advisory Committee (MRAC) and is also Deputy Chair of the Board of Consumers Health Forum (CHF), the peak national health consumer organisation in Australia. Jo’s areas of interest include developing pathways for patient engagement in HTA, public health responses to infectious disease outbreaks, and capacity building for patient representatives and advocates. Jo has contributed to health policy reform and analysis in the areas of Communicable Diseases, the National Medicines Policy and PBS programs. Jo has been the Chair of the HTA Consumer Consultative Committee within the Office of Health Technology Assessment in the Department of Health since it was established in February 2017.

Nicole Millis – Chief Executive Officer, RVA

A qualified social worker, Nicole has both personal and professional experience in the rare disease sector. Nicole has engaged in rare disease advocacy since 2008 and has extensive experience regarding access to treatments. Since 2018, Nicole has held the role of consumer nominee on the Life Saving Drugs Program Expert Panel. Under Nicole’s guidance, RVA led the collaborative development of the National Strategic Action Plan for Rare Diseases, the first nationally coordinated effort to address rare diseases in Australia.

Host/Q&A Session Moderator

Louse Healy – Education and Advocacy Manager, RVA

Louise has extensive experience working as a consultant and coach in the corporate sector and has post graduate qualifications in psychology. Her connection with rare conditions began when her first child was born with a rare metabolic disorder. Louise has been involved in rare disease support and advocacy for over 10 years and she is the current Vice President of the Metabolic Dietary Disorders Association (MDDA). She has led successful advocacy campaigns for access to medicines and support programs for people with rare disorders of protein metabolism. Louise is a previous RVA Board member, current member of the Queensland Genomics Community Advisory Board and a founding board member of the Global Association for PKU.