Childhood cancer drug funding in Ontario: A citizen panel approach to identifying public priorities

Lead Researcher(s):  Avram Denburg

Lead Institution: The Hospital for Sick Children

Co-Investigators: Abelson J, Bombard Y, Croker A, Fraser B, Gauvreau C, Gibson J, Hayeems R, Moore-Hepburn C, Palmer A, Wilson  M

ARCC Program Area(s): Societal Values and Public Engagement

Funding Term: 2020-2022

Project Summary:

Health systems are faced with the dual and often competing pressures of resource scarcity and
technological innovation. Cancer treatment is a prominent example of the mounting tension
between the rising cost of novel drugs and health system priority-setting in the face of financial
constraints. In this environment, emphasis on the comparative value of health interventions has
come to figure prominently in health policy and program stewardship, in Canada and
internationally. Policymakers are increasingly turning to the public to help inform difficult valuesbased
decisions about drug funding. Within the scoped suite of methods for involving the public,
deliberative public engagement approaches have emerged as a legitimate and impactful means of
eliciting public values and priorities about health policy dilemmas, including cancer drug funding.
Canada is a global leader in research and integration of societal values in public policy decisions on
drug and technology funding. Recent work in the Canadian context has refined and applied
methods of deliberative public engagement to decisions about cancer drug funding, both
provincially and nationally.

Despite this recent activity, childhood cancer has been largely excluded from public engagement
efforts to date. The vast majority of evidence generated on societal values for drug policy
decisions has focused on adult health problems and technologies. However, the values-based
trade-offs involved in drug funding decisions can vary in important ways in relation to features of
the illness, the population affected, or the sociocultural context. Evidence from qualitative and
stated preference studies suggests that public priorities for health resource allocation differ in
respect to children as compared to adults, and that the values that inform those priorities differ
both in degree and in kind: the relative weight ascribed to discrete values often changes, and
unique value constructs enter the decision space. More broadly, there is growing awareness that
overarching paradigms of health technology assessment (HTA) present a variety of conceptual,
normative and methodological problems in the context of child health, including differing
standards of clinical evidence and limitations to current methods of economic evaluation. These
problems often result in increased uncertainty about the comparative value of child health
technologies, emphasizing the importance of robust and context-specific evidence on societal
values in decisions about drug funding for children with cancer.

Recent drug policy changes in Ontario have created both a need and a window of opportunity to
study the nature and role of public values in provincial funding decisions on childhood cancer
drugs. The province’s recent extension of universal public formulary coverage to Ontario residents
under 25 years of age (OHIP+) has raised critical questions about which paediatric drugs to cover
and why. The fit of the existing public formulary to child health needs and realities requires careful
scrutiny if the policy reform is to achieve its core objectives of optimizing health care access and
health outcomes for Ontario’s children and youth. Efforts to rationalize and update the existing
public formulary demand context-specific knowledge about the societal values that should inform
coverage decisions for children. In a drug policy environment increasingly characterized by crossprovincial
interaction and collaboration, such insights are likely to yield important transferable.

This project will extend robust and well-tested methods for deliberative public engagement on
cancer drug funding to the childhood cancer space. It will leverage the combined expertise of the
study team in childhood cancer, paediatric drug policy and deliberative public engagement to
generate distinct, context-specific evidence on societal values for childhood cancer drug funding in
Ontario. Importantly, this work will complement recent societal values elicitation on adult cancer
drug funding in the province, enabling juxtaposition of the normative dilemmas and priorities the
public ascribes to children and adults, respectively. We anticipate that this comparative and
system-specific knowledge will furnish insights uniquely relevant to the evolving policy
environment for paediatric drug funding in Ontario, and provide a core set of public values to
guide future coverage decisions in this context. We envision this project as the first phase in a
larger program of work aimed at eliciting public values for childhood cancer drug funding in
Canada, through additional deliberative public engagement events at the provincial and national
levels. Ultimately, it is hoped that this work, in conjunction with parallel streams of research by
study investigators, will inform the development of a national drug policy framework for children
in Canada.

The core objectives of the project are to:

1. Delineate societal values and preferences that should inform public funding decisions for childhood cancer drugs in Ontario; and
2. Compare public values and priorities related to childhood cancer drug funding with recent provincial and pan-Canadian evidence on the samein adults.

Project deliverables, which issue from these objectives, will include:

1. Recommendations to guide provincial policy design and coverage decisions for paediatric cancer
   drugs, in the context of recent public policy reforms on drug funding for children and youth in
   Ontario; and
2. The development of tools and strategies to assist policymakers make evidence informed
   funding decisions about childhood cancer drugs that incorporate public values.