Consumer Comments in Health Technology Assessment in Australia: How Common and Influential Are They?

Abstract

Objectives: Meaningful patient engagement (PE) in medicines development requires all stakeholders have a common purpose and vision, and a clear understanding of respective expectations. As phase one of a research project, a qualitative survey was undertaken to understand expectations from stakeholders. MethOds: The survey explored four key themes from the perspective of each stakeholder group: meaning, views, expectations and priorities for PE. Participants were grouped into 7 broad categories: policymakers/regulators; healthcare professionals (HCPs); research funders; payers/purchasers/HTA; patients/patient representatives; pharmaceutical/life sciences industry; academic researchers. Results: 59 interviews were conducted: patients, n= 10; HCPs, n= 7; policy, n= 8; payers, n= 6; industry, n= 13; researchers, n= 8; research funders, n= 7. Responses were received from a wide range of geographies (Europe, North America, Australia, Asia and Africa), PE experience and job seniority/role. There was generally alignment across the stakeholder groups on: meaning of PE; importance of promoting PE to a higher level than currently; need for a more structured process and guidance. The major area of no/little alignment was around stakeholder expectations of the role other stakeholders should play. Overall, policymakers/regulators were expected by others to take more responsibility to drive PE, create a framework and facilitate PE, provide guidelines of good practice and connect stakeholders, but this expectation was not recognised as strongly by the policymakers/regulators group themselves. HCPs were seen by others as the link between patients and other stakeholders but HCPs did not necessarily see themselves as having an active role in PE (in the context of medicines development) beyond recruiting for clinical trials. cOnclusiOns: To our knowledge this is the first qualitative survey exploring stakeholders' expectations from PE in medicines development. Despite broad stakeholder categories, clear themes emerged: a desire for effective PE but some discord in alignment, structure and clarity. A Stakeholder Expectations Matrix that summarises findings and provides an 'action list' for stakeholders will be presented.Objectives: A new workshop format was developed with the goal to achieve a deeper understanding of the unique perspective of patients in the development or evaluation of new therapies and to increase the awareness of healthcare industry stakeholders for the importance and techniques of Patient Engagement (PE) in preparing for Health Technology Assessment (HTA). MethOds: A one-day pilot workshop, was held in Nov 2016 in Basel, Switzerland. Multidisciplinary participants (n= 12) from the life sciences industry and 2 patient representatives attended. Interest in improving their understanding on knowledge component(s) was a criteria. Recruitment happened via networks of faculty members. HTA and PE content sessions were followed with experiential sessions using drawing exercises, which guided the participants through the e...