The role of the consumer and other patient advocates in drug regulation and reimbursement has been a hot topic in recent months. The patient-led online campaign for access to Kalydeco last year demonstrates consumers’ increasing expectations to have a role in health technology assessment (HTA). As does the astounding 2140 submissions from consumer groups, healthcare professionals, patients, carers and supporters that were considered as part of the March 2015 PBAC meeting.
The role of consumer nominees
Kathryn Briant and Jo Watson are past and current consumer nominees for both the Advisory Committee on Prescription Medicines (ACPM) and the Pharmaceutical Benefits Advisory Committee (PBAC) respectively. At the recent ARCS Scientific Congress they shared their insights of the roles consumer advocates play in advisory bodies as well as the future challenges from a consumer perspective.
Kathryn spoke of the rigorous consumer representative training all consumer nominees undergo to ensure that the committee has a focus on ‘patient centred care’. This is in keeping with the Australian Charter of Healthcare Rights which specifies the key rights of patients and consumers when seeking or receiving healthcare services.
As part of the ACPM, the consumer member aims to raise specific consumer issues for discussion and to raise overall awareness of consumer-related issues. In addition to the TGA’s consideration of safety, efficacy and quality, Kathryn noted that a health consumer focuses on access, communication and the quality of information provided. They also focus on how therapies can assist with alleviating time and support requirements for both consumers and their carers.
Jo Watson, the consumer nominee for the PBAC, has a background as an advocate for access to AIDS therapies and was a member of the now-defunct Pharmaceutical Benefits Pricing Authority (PBPA). Jo is also the current deputy chair for the Consumer Health Forum.
As consumer advocate, Jo read all 2140 of the aforementioned submissions to the PBAC and summarised them in a report that was presented on Day 1 of the PBAC meeting. The number of submissions, Jo stated, was a clear response to a PBAC round inclusive of some ground breaking and curative therapies that invoked passionate responses in the high impact disease areas of hepatitis C and melanoma.
She explained that consumers are seeking a more expansive and accessible explanation of the rationale and outcome language behind the decision making presented in Public Summary Documents, the basis for PBAC recommendations, rejections or deferrals. She also highlighted the challenge of facilitating high quality and robust consumer engagements considering the abbreviated consultation period.
The public’s preference for engagement
Sally Wortley, a PhD research fellow, also presented her thoughts at ARCS on the role of the consumer in health technology assessment. She has been assessing the public’s preferences for engagement in HTA decision-making and noted that the National Institute for Health and Care Excellence (NICE) in the UK is seen as the leader in public engagement with both partisan and non-partisan approaches to engaging with the public. Sally’s fascinating research looks beyond the obvious ‘consumer engagement is important’ and investigates what works, identifying optimal methods and models for engagement.
Sally’s key findings have been that the extent and type of public engagement is influenced by four key factors:
- technology value,
- impact of the decision on individuals and society,
- uncertainties in the evidence assessment process, and
- confidence in the procedural justice of the HTA decision making process.
Significant strides in the consumer engagement space have been made with the PBAC engaging with a number of peak consumer health groups at the March 2015 meeting as well as their publishing of the outcomes of these discussions. However it will be very interesting to see how the role of the consumer and patient advocacy in HTA decision making will evolve moving forward.
This article was written by Daniel Tan from our Market Access team.