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Leela Barham talks to Yvette Venable, the Institute for Clinical Effectiveness Review's new Vice President of Patient Engagement, about how ICER is ramping up its efforts to bring patient organizations along on its journey.
The US not-for-profit Institute for Clinical Effectiveness Review (ICER) describes itself as the US’ independent watchdog on drug pricing; it sets out value-based prices for drugs that it assesses. When the organization talks about value, it includes what is important to patients and their families. With the appointment of Yvette Venable in a brand new role as Vice President of Patient Engagement,1 the organization will be ramping up its efforts to bring patient organizations along on its journey. Leela Barham spoke to Venable during her first week in the new role.
ICER launched a new patient engagement program in January 2020. It’s against this backdrop that Venable has been appointed to take on the role of VP of Patient Engagement. She says it’s a time of exciting change that tempted her to join ICER after working in both consultancy and pharma, including Roche, Baxalta, and Kyowa Kirin, over the last 20 years. The organization is taking steps to “formalize how patients can input into the ICER process as part of the new value framework.” Venable will bring lessons learned from her work in industry. She’s worked with patient groups not only in the US, but in Europe, Asia-Pacific and Latin America, and she sees similarities in the challenges ICER and industry face in working with patient organizations. “Working with patient advocates has become something much more strategic, it’s necessary to get products to market and access for patients when they need them,” she explains.
Yet it’s not always easy for patient organizations to get involved in access issues; “patient groups are dealing with challenges, many don’t have professional staff and resources, and it can be hard for them to participate in value assessments.” The goal for Venable is to share best practices and enable patient organizations to contribute.
The patient engagement program at ICER includes offering to help patient organizations prepare for ICER assessments. It also aims to use what matters most to patients to guide ICER assessments, including both the clinical benefits that patients see as most important, but also the non-clinical benefits that are important (even if less amenable to measurement). That could mean setting up new surveys working with patient groups as a practical example.
Venable is keen to promote the idea that it’s an opportunity for patient groups to help make bigger changes and help the US healthcare system to work better. “We can partner with the patient community, coach them and find out where we can collaborate and together work to improve the health care system,” she says.
Venable is not likely to initiate radical change in terms of ICERs approach to working with patient organizations; she is keen to enhance the work ICER has already done. She says, “I see a lot of opportunity to build on the foundation that has been laid out already.” Given it’s still her first month in the role, she’s getting to know ICER and her colleagues, and describes how she spends time each day talking to the team, the program managers who are responsible for working with patient groups. “I don’t have to push an ethos of patient centricity, there’s a rock-solid foundation of it [at ICER], but I want to work with colleagues to help them better engage, make sure that they have the tools and resources that they need.”
The end result is to adapt economic models with patient input, as well as hear from patients throughout the process, formally with written comments and also in in-person meetings (although, post COVID-19, a move to video calls may be necessary), as well as phone calls and emails. Patients are encouraged not only to come and sit on committees that deliberate on the evidence and come to a view on value, but also to speak during the meetings beyond pre-prepared statements. This is key says Venable. “There is an immediate need for me to get up to speed on the ongoing assessments. I want to be a bridge to facilitate interaction [between patient organizations and ICER].” She recognizes that it might not be easy for patient groups to get involved, noting that, “I want to try to simplify what can be an intimidating task.”
ICER is also debriefing with patient groups, which is what Venable is focusing on at the moment, getting to know the groups that ICER has worked with. Much of her days are spent “listening to the experience of patient organizations who have worked with ICER. I want to see what has worked, and what hasn’t, in the past.”
Against the backdrop of COVID-19, many of Venables conversations are being held remotely. She explains, “I am working through web tech, video conferencing in getting to know people.” For the wider organization COVID-19 has led to indefinite postponement of public meetings for sickle cell disease and cystic fibrosis and had added up to three months to the timelines of others.2
Venable has got some early ideas of what she wants to try out; “something we need to look at are the summaries for the media and how they might be adapted so that they are appropriate for the patient community to use.” She is keen to look beyond the ICER experience to date. “There’s lots of great work on patient involvement and value assessment in other organizations,” she says. “I want to learn from these organizations, with the goal of enabling patient organizations to participate as fully as possible [in ICERs assessments].” She has been spending time each day going through the materials that organizations have made available on engaging patient organizations. Getting an overview will place ICERs approach - and any adaptations that Venable might want to table in the future - into the wider landscape.
Venable will have to work not only with supporters of ICER, but also those ICER describes in the job advert for the VP role as “skeptics of their work.”3 It was only in September 2018 that over 90 US patient organizations wrote an open letter to CVS railing against CVS proposed use of ICERs assessment to inform coverage decisions.4 The letter centered on what were seen as deep flaws in ICER’s cost-effectiveness analysis, with accusations that QALYs – a key metric used by ICER – are discriminatory. The letter caused debate, not only for its content, but for whose interests were driving it, as reported in the press.5 The industry-funded Alliance for Patient Access even has a Youtube video on what it sees as wrong with ICER (and economists, generally it seems, playing a role in health care), launched in November 2019.6
Of course, patient organizations have been criticized too with some seeing them as too reliant on industry. Funding from companies is the reality though for many organizations and shouldn’t automatically mean their input is downgraded. Venable explains her perspective: “Coming from an industry perspective, I’ve worked with many patient groups and helped them through grant funding processes from industry, so I know how important that source of funding can be to the organizations. I believe it can be done well and in a right way that maintains the independence and objectivity of both parties.”
Much like the wider ICER organization, Venable will be learning and improving over time. Part of job – too soon to have been tackled just yet – is setting out some metrics to measure progress on patient engagement at ICER. “In the longer-term, we might have more formal metrics in place to get substantive feedback on how we are doing and how to do it better,” she explains.
Leela Barham is a researcher and writer on health and pharmaceuticals from a health economic and policy perspective.