Ever asked for feedback? The results can often be quite surprising.
We might find ourselves pondering questions like, “Why did they focus on that particular point?” or “Why did they use that phrase? No one has mentioned this before.”
I’m not referring to the typical 360-degree feedback that many professionals encounter in the workplace (thanks, Human Resources!). Instead, I’m talking about consumer feedback submitted during the Pharmaceutical Benefits Advisory Committee (PBAC) and Medical Services Advisory Committee (MSAC) public consultation surveys, which occur during the health technology assessment (HTA) process. Consumers in this context can include current and future patients, carers, consumer groups, medical organisations, or health professionals.
We all recognise that consumers provide valuable insights into the lived experiences of patients with a disease and their carers. Some of these nuances might be well-documented in peer-reviewed journal articles and clinical management guidelines. However, some feedback can be unexpectedly eye-opening. It’s crucial that these real-life case studies are considered during the development and evaluation of PBAC/MSAC reimbursement submissions.
Currently, consumers have eight weeks to submit their feedback via the Office of Health Technology Assessment (OHTA) consultation hub:
https://ohta-consultations.health.gov.au/pbac
https://ohta-consultations.health.gov.au/msac
The sponsor then receives consumer comments along with the Evaluation Sub-Committee (ESC) report. The feedback we receive from patients can be surprising and may reveal additional issues related to the ‘unmet clinical need’ argument in our submissions. Consumers might mention unexpected challenges, such as high parking fees, time taken off work, or difficulty finding care for dependents during treatment. Perhaps self-esteem issues from a skin rash might have a greater impact than the physical pain or itch. Do these self-esteem issues lead to greater social withdrawal? These factors are critical to understand and evaluate.
One solution is to include patient-reported experience measures (PREMs) or patient-reported outcomes measures (PROMs) data in our HTA submissions. Currently, there are limited PBAC/MSAC submissions that incorporate patient preference study data to support the reimbursement of health technology. PREMs capture patients’ experiences with their healthcare and services, while PROMs provide insights into how their illness or care has impacted their overall health and well-being. Understanding and addressing the barriers to the acceptance and evaluation of PREM and PROM data by decision-makers is crucial for advancing the integration of patient perspectives in HTA.
So, my questions are:
1) Can we add a specific survey question for consumers in the OHTA consultation hub regarding their financial spend on disease management? This feedback could help us quantify the change in patient out-of-pocket costs when switching to the alternative healthcare intervention.
2) Why do public summary documents (PSDs) only include a brief summary of consumer feedback? This feedback is valuable for other sponsors to know when developing future submissions for the same disease area, especially when there are limited publications reporting the patient/carer quality of life impacts on their lived experience.
3) What is your experience with including PREM and PROM data in PBAC/MSAC submissions?
What are your thoughts on how we collect/handle consumer feedback in HTA?
