Patient Voice Initiative

Patient Voice Initiative – Engaging patients in health care decision making

The Patient Voice Initiative began in 2015 when a group of stakeholders from industry, academia and patient groups came together to discuss methodologies and approaches for eliciting the patient perspective on the value of medicines.  As a result of these meetings a conference was organised aimed at increasing patient engagement in health technology assessment (HTA) in Australia.  Following the conference, a steering committee was formed to action items generated from the workshops.

The current steering committee membership is:

  • Jessica Bean (Chair), patient advocate
  • Todd Stephenson (Secretary), Janssen Australia and New Zealand
  • Ann Single, consumer advocate
  • Kate Vines, Rare Cancers Australia
  • Simon Fifer, CaPPRe
  • Hayley Andersen, BMS Australia

In August 2018 we released our latest report: Recommendations to improve patient voice in health technology assessment in Australia. In the report, we recommend improving consumer involvement in health technology assessments conducted by the Pharmaceutical Benefits Advisory Committee (PBAC), Medical Services Advisory Committee (MSAC) and Prostheses List Advisory Committee (PLAC) in four key areas:

  • Legislation
  • Communication
  • Training and guidance
  • Evidence generation 

These recommendations are based on the needs expressed by patients and patient groups at workshops convened by the Patient Voice Initiative. This report contains practical suggestions for how these needs can be met and examples of how HTA bodies do it in other countries. 

If you have any questions or comments please ‘Contact Us’.


Notes from previous meetings

Download a copy of HTA for consumers from our 2016 Brisbane and Melbourne meetings here.

Summary notes from each of the workshops here:

Brisbane notes
Melbourne notes
Canberra notes

Outcomes from our Sydney forum in February 2016

Three broad areas of overall agreement emerged from the patient conference.