In the vast landscape of healthcare decision making, the voices that matter most often go unheard- those of the patients themselves. For cancer patients in Canada, much like all the stakeholders along the cancer continuum, it is filled with uncertainty. But patients seem to carry the brunt of the uncertainty. By acknowledging and integrating the unique perspectives and experiences into the value discussion surrounding cancer care, can we reduce the uncertainty in the process, and give Canadians with cancer more certainty. Placing the patient voice at the center of these conversations, we can understand the impact of treatments, outcomes, and costs (financial and otherwise) on the lives of those affected by this disease and understand the true value of cancer interventions.
Canadians living with cancer can offer invaluable insights into the challenges they face, their treatment preferences, and the outcomes that truly matter to them.
Discussions around value based healthcare are increasingly becoming prioritised, but is value being defined by those who approve and pay for these interventions (regulators, reimbursers and payors) in the same way as for those who are the end users of these interventions(drugs/devices/technologies).
Traditionally, the value discussion surrounding cancer care has primarily revolved around clinical effectiveness and cost considerations. While these factors are undeniably important, they fail to capture the full picture of what value means to those with cancer. Patient centric value encompasses aspects such as quality of life (QoL), functional outcomes, symptom management, and holistic well being. By incorporating the patient perspective into the value discussion, decision makers can make more informed choices that align with their needs, values, goals, and priorities.
While we can all agree that spiraling healthcare costs in Canada, and elsewhere, need to be addressed, is it safe to assume that these same stakeholders agree that there is a need to redefine value in the healthcare conversation. Current value frameworks in the Canadian HTA process oversimplify complex challenges, lack diversity and do not consider the values that are of utmost importance to patients, potentially limiting access to the medical interventions of value for these patients.
Value frameworks often prioritize quantitative, economic models that focus on assessing cost effectiveness and budget impact. These models heavily rely on metrics such as quality-adjusted life years (QALYs) and incremental cost-effectiveness ratios (ICERs), which can overshadow other crucial elements of a patient-centered value framework. However, for individuals living with a disease, value is a highly personalized and dynamic concept that depends on the specific condition and evolves with the trajectory of the disease and stage of life. Moreover, different stakeholders, including health technology assessment (HTA) bodies, health economists, healthcare professionals, manufacturers (pharmaceutical and biotech companies), and patients, may have differing perspectives on value. Patients' viewpoints on value often diverge significantly from those of physicians and payors. Patients consider various factors beyond clinical outcomes and cost, such as a treatment's ability to help them achieve personal goals and enhance their overall wellbeing. Additionally, even among individuals with the same condition, their individual values and preferences may vary. Therefore bridging the gap between cost effectiveness interpretations of ‘value’ in health care and patient perceptions of value is increasingly important.
To the patient community, discussions regarding value are not a theoretical exercise and their perspective and firsthand experience should be integral to shaping the understanding of value. Value frameworks that inform decision making that affects treatment access, then patients need to have a central role in shaping these value frameworks to drive real world impact and sharing risk and uncertainty amongst the stakeholders in the healthcare continuum.
By involving patients in defining these value assessments through inclusive and transparent procedures, we can create a healthcare landscape that ensures their voices are heard, their needs are met, and their wellbeing prioritized.
KEY POINTS FOR DECISION MAKERS
Acknowledging and integrating the unique perspectives and experiences into the value discussion surrounding cancer care can reduce uncertainty
In order to understand the impact of treatments, outcomes, and costs (financial and otherwise) on the lives of those affected by cancer, the patient voice must be at the centre of the conversation
Value frameworks often prioritize quantitative, economic models that heavily rely on metrics such as quality adjusted life years (QALYs) and incremental cost effectiveness ratios (ICERs), which can overshadow other crucial elements of a patient centered value framework
Patients need to have a central role in shaping value frameworks to drive real world impact
