Environmental Responsibility and Patient Voice in Access and HEOR
Perspectives from Lucy Eddowes, Scientific Director, from her trip to the 2023 ISPOR Europe conference in Copenhagen, Denmark
Away from Joint Clinical Assessment, AI and upcoming changes to EU pharmaceutical legislation, my ISPOR Europe in Copenhagen was spent mulling over sustainability in the HEOR sector and patient voice, linked to my work on our B Corp certification (an accreditation for businesses meeting the highest standards of verified social and environmental performance) and mentorship of our Patient Centricity and Engagement Lead.
Baby Steps Towards Bringing Environmental Sustainability into Value Assessment
I attended two sessions about bringing environmental sustainability into value assessment and HTA processes, and a closed-door discussion about a proposed environmental-focused ISPOR special interest group.1-3 My takeaways were that, despite the need for us to collectively address environmental challenges and that many pharmaceutical companies and healthcare providers have already set environmental targets, tangible, practical methods for including environmental sustainability in decision-making for medicines are lacking. Our field has work to do to agree what the scope of evaluating the environmental sustainability of health technologies should be. We must then agree on the practicalities of how we might measure and assess it before it can be included in decision-making.
Professor Andy Briggs (LSHTM, UK) noted the need for us to consider inter-generational benefits in how we proceed, and also a preference to extrapolate existing methodology and data standards from other sectors to health technologies, to leverage that knowledge and harmonise with existing data. Building on this, I am keen to use some of our recent experience and network from measuring our carbon footprint to explore how we might bring carbon into the equation for an economic evaluation in healthcare for ourselves.
Patient Engagement with Access and HEOR
We all know the value of bringing the patient voice into our work, as only patients can provide a full view on what their condition is like. However, what people often struggle with are the practicalities of bringing patient input into their work. I found discussion at a session on patient engagement and patient-centred research4 about paying patients for their time helpful, particularly after a debate I’d heard as a patient representative myself recently where some members of the group were concerned that paying patients was a conflict of interest. Dr Jill Carlton (University of Sheffield, UK) reminded us that those on low incomes typically have greater health needs than others, but that making payments for research participation to those on a low income may not be simple. That is because any payment received would count towards their income when assessing their eligibility for benefits, such as Universal Credit in the UK (that helps recipients pay their living costs) and Medicaid in the US (that covers basic healthcare).
What I took from the discussion was that we should be offering a menu of options here, such as direct payments, vouchers, expenses only and nominated charity donations, to try to make our research more inclusive and to put our money where our mouth is when we say that we value patients’ time and input. This discussion brought to mind news coverage in The Observer earlier this year, which highlighted the financial link between many patient organisations who provided patient input for NICE technology appraisals and the pharmaceutical companies developing the therapies being appraised.5 However, these financial links feel unavoidable if we are to bring the patient voice into everything we do throughout the drug development process so that we can focus development on addressing societal and patient needs. Thus, transparency and training for patient representatives and organisations feels like a natural place to direct efforts. I was therefore sorry to miss the workshop led by the European Patients’ Academy on Therapeutic Innovation (EUPATI),6 which aimed to shape patient education for effective participation in HTA processes, but very much look forward to seeing the outputs.
As we prepare to embark on a project for the Philippine Alliance of Patient Organizations about patient engagement and influence on HTA processes in different countries, I was interested to discuss the findings from a survey by the Greek Patients’ Association during one of the many well-attended poster sessions.7 The research found that while 99% of respondents thought that patient associations should provide input for health policy decision-making, only 3% thought they should be a decision-maker.
It was also nice to see research on the use of genAI for patient lay summaries,8 a use case for genAI that has really obvious potential both for medical writers but also for the many thousands of volunteer-led non-profit organisations who want to translate scientific research into something their members can understand and engage with. The research found that the genAI tools were able to create patient lay summaries that better met the brief across a range of metrics, although optimisation was needed and all summaries required some level of human editing before they would make a suitable first draft. This use case for genAI particularly excites me for reaching underserved communities and bridging language barriers more quickly, so I am looking forward to giving it a try for myself.