Health Technology Assessment Policy and Methods Review: Rare Disease Sector Webinar

RVA News

Equitable access to health technology is a key priority of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan). Rare Voices Australia (RVA) and the rare disease sector have been actively advocating for reform that makes health technology assessment (HTA) for rare disease therapies more fit-for-purpose. Most recently, as the national peak body for Australians living with a rare disease, RVA has been advocating to ensure that consumers lead the co-design of an enhanced consumer engagement process and met with the HTA Policy and Methods Review Reference Committee to discuss this issue. You can read the communique that was released following two meetings, including the meeting with RVA.  

Health Technology Assessment Policy and Methods Review

The HTA Policy and Methods Review (the HTA Review) is being conducted by the Department of Health and Aged Care and is an opportunity to ensure Australia’s HTA policy is constantly improving under evaluation. Click here to read more about HTA; the Terms of Reference (TOR) for the HTA Review; RVA’s reflections on the TOR; and more.

Rare Disease Sector Webinar: Health Technology Assessment Policy and Methods Review

As part of RVA’s ongoing HTA advocacy, we encourage rare disease organisations/groups to participate in the HTA Review in ways that align with their capacity. To support this, we are running a webinar. 

Webinar Details:

Date: Monday, 8 May 2023
Time: 7pm-8:30pm AEST

All are welcome to register. The webinar will consist of presentations and a Q&A session. The presentations will be recorded and uploaded to RVA’s Online Education Portal. The Q&A session will only be available to those attending live.

Submit Your Questions

You are welcome to submit your questions for consideration ahead of the webinar. Please email all questions to: [email protected]

Note: the Q&A session will only be available to those attending live.

The Webinar Will Cover:

  • What is HTA?
  • What is the HTA Review and why is it being done?
  • How can consumers get involved in the HTA Review?
  • The information, evidence and input the HTA Policy and Methods Review Reference Committee are seeking from consumers
  • The enhanced consumer engagement process and an update on work already underway
  • HTA and rare disease therapies
  • Key messages aligned with the Action Plan


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

Louise 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.

RVA Partner Organisations/Groups

RVA offers mentoring for RVA Partner organisations/groups that wish to access customised guidance and support: [email protected]