Terms of Reference Published: Health Technology Assessment Policy and Methods Review


The Australian Government Department of Health and Aged Care has published the terms of reference (TOR) for the Health Technology Assessment (HTA) Policy and Methods Review (the HTA Review). Read the TOR.

Rare Voices Australia (RVA) was pleased to contribute to the TOR consultation as the national peak body for Australians living with a rare disease.

What is health technology assessment?

A Health Technology Assessment (HTA) involves a range of processes and mechanisms that use scientific evidence to assess the quality, safety, efficacy, effectiveness and cost effectiveness of health services. Learn more about HTA.

The terms of reference

The TOR better articulate how the HTA Review is positioned alongside other concurrent HTA reform processes undertaken, including the:

  • Refreshed National Medicines Policy
  • Standing Committee on Health, Aged Care and Sport inquiry into approval processes for new drugs and novel medical technologies in Australia
  • Co-design of an Enhanced Consumer Engagement Process (ECEP) to capture consumer voices regarding applications to list new medicines on the Pharmaceutical Benefits Scheme (PBS)

Rare Voices Australia’s reflections on the terms of reference

RVA is pleased that it is noted within the TOR that the ECEP will be informed by the existing Conversations for Change work led by the Department of Health and Aged Care, which involves RVA and rare disease organisation group leaders with an active interest in HTA.

The TOR read:

“The Enhanced Consumer Engagement Process is intended to facilitate the capture of informed consumer and patient perspectives earlier…”

RVA also welcomes the strong focus within the TOR on:

  • “identification of patient relevant outcomes”
  • “augmentation of… evidence with data designed to capture the value of health technologies from the perspective of patients and the community” (e.g. qualitative research, patient reported outcome measures (PROMs) etc.)
  • “increasing transparency”
  • “evaluations (including how the value of medicines is captured)”

See page 7 of the TOR for more information regarding the above points.

How to participate in the Health Technology Assessment Review

The Department of Health and Aged Care advises there will be multiple opportunities for stakeholders to provide input throughout the HTA Review. You can subscribe to PBS News and Updates for more information about the HTA Review.

The first round of consultation focusing on the objectives in the TOR will open on 11 April 2023. A consultation plan outlining all opportunities for stakeholder involvement in the HTA Review will be available with the opening of the first round of consultations.

Why is health technology assessment important in rare disease?

As noted in the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan), many different types of health technology are used in rare diseases, and many more are emerging. Equitable access to health technologies is an important issue for the rare disease community and is highlighted in the Action Plan:

Priority 2.4: Enable all Australians to have equitable access to the best available health technology.

Limited data is inherent in rare diseases. This creates uncertainties that present specific challenges for HTA processes.

Preparing for stakeholder consultations

The following information may be of interest to organisations planning to participate in HTA Review stakeholder consultations.

RVA Education: Writing Effective Government Submissions – A Guide for Rare Disease Organisations (Available to RVA Partners)

This course is ideal for:

  • Rare disease organisation leaders interested in lodging submissions to government inquiries and consultations
  • People living with a rare disease who are interested in lodging submissions and no formal support group exists

Note: if you are an RVA Partner, you will need to register on the site if you have not already done so.

RVA Partner organisations can also reach out to RVA for customised mentorship support: [email protected]

Health Technology Assessment international (HTAi) 2023 Annual Meeting

The Health Technology Assessment international (HTAi) 2023 Annual Meeting is taking place in Adelaide from 24 to 28 June 2023. The 2023 Annual Meeting theme is, The Road to Policy and Clinical Integration. HTAi is the global scientific and professional society for everyone who produces, uses, or encounters HTA to support optimal policy and decision making.