Addressing the affordability of cancer drugs: using deliberative public engagement to inform health policy

Abstract

BackgroundHealth system expenditure on cancer drugs is rising rapidly in many OECD countries given the costly new treatments and increased rates of use due to a growing and ageing population. These factors put considerable strain on the sustainability of health systems worldwide, sparking public debate among clinicians, pharmaceutical companies, policy-makers and citizens on issues of affordability and equity. We engaged Canadians through a series of deliberative public engagement events to determine their priorities for making cancer drug funding decisions fair and sustainable in Canada’s publicly financed health system.MethodsAn approach to deliberation was developed based on the McMaster Health Forum’s citizen panels and the established Burgess and O'Doherty model of deliberative public engagement. Six deliberations were held across Canada in 2016. Transcripts were coded in NVivo and analysed to determine where participants’ views converged and diverged. Recommendations were grouped thematically.ResultsA total of 115 Canadians participated in the deliberative events and developed 86 recommendations.Recommendations included the review and regular re-review of approved drugs using ‘real-world’ evidence on effectiveness and cost-effectiveness; prioritisation of treatments that restore patients’ independence, mental health and general well-being; ensuring that decision processes, results and their rationales are transparent; and commitment to people with similar needs receiving the same care regardless of where in Canada they live.ConclusionsThe next steps for policy-makers should be to develop mechanisms for (1) re-reviewing effectiveness and cost-effectiveness data for all cancer drugs; (2) making disinvestments in cancer drugs that satisfy requirements relating to grandfathering and compassionate access; (3) ensuring fair and equitable access to cancer drugs for all Canadians; and (4) fostering a pan-Canadian approach to cancer drug funding decisions.Electronic supplementary materialThe online version of this article (10.1186/s12961-019-0411-8) contains supplementary material, which is available to authorized users.

Four normative perspectives on public health policy-making and their preferences for bodies of evidence

“…We feel it is time for the health research community to re-politicise the idea of evidence use in policy-making [4,5,7]. One of the reasons why policy-makers may not use research in policy-making may be the fact that much of the available research comes from single bodies of evidence [17].…”

“…Policy-making processes in public health and healthcare involve accounting for trade-offs between competing interests and values [1][2][3][4]. All decisions will have implications for budgets and priorities and are also likely to involve social considerations such as questions of equity, justice or morality [5].…”

How deliberative designs empower citizens’ voices: A case study on Ghana’s deliberative poll on agriculture and the environment

“…According to them, wicked problems “have neither of these clarifying traits; and they include nearly all public policy issues—whether the question concerns the location of a freeway, the adjustment of a tax rate, the modification of school curricula, or the confrontation of crime” (p. 160). Examples of deliberation about “wicked problems” include biobanking in British Columbia (Walmsley, 2010), the US National Citizens’ Technology Forum (Anderson, Delborne, et al, 2013a), public deliberation on genetically modified (GM) maize in southern Africa (Mwale, 2006), a consensus conference on GM foods in Taiwan (Fan, 2015), and deliberative public engagement events among Canadians on cancer drugs (Bentley et al, 2019).…”

Evidence, values, and funding decisions in Canadian cancer systems

“…Following the BC public engagement, CPAC funded a pan-Canadian set of deliberations on public values concerning the funding of cancer drugs in different provinces, as well as public values in a pan-Canadian context. 19 The design of this approach combined the strengths of the McMaster Health Forum’s citizen panels and the Burgess and O’Doherty approach. 19 This “hybrid” model was designed to allow more events to be run in a shorter period of time, thereby allowing a greater number of participants to be part of the engagement process.…”

“…19 The design of this approach combined the strengths of the McMaster Health Forum’s citizen panels and the Burgess and O’Doherty approach. 19 This “hybrid” model was designed to allow more events to be run in a shorter period of time, thereby allowing a greater number of participants to be part of the engagement process. This project convened five provincial events: one in Saskatchewan, Ontario, and Nova Scotia, and two in Quebec (one in French, one in English).…”