Health systems around the world are often strained due to the high burden of costs. The idea of value frameworks has arisen as an attempt to guide decision-makers in their choices on behalf of patients. These value frameworks evaluate all aspects of cancer treatment: clinical benefit, side effects, and improvement in patient symptoms or quality of life. But given the complexities of the multitude of health systems around the world, it is not a straightforward discussion. Currently, the dialogue is primarily driven by thought leaders and health economists from the United States and Europe. But there are critical voices missing from this discussion: patients and patient advocates.
Recently, I had the opportunity to meet with a group of advocates from around the world to discuss value frameworks in an attempt to create a “patient framework” of our own. While that goal was too ambitious for the time we had together, we agreed on the need for input from the patient and advocate perspectives to help inform us what ‘value’ means. The result of this meeting was an article just published in the Journal of Health Expectations, co-authored by international advocates for cancer care.
Read the publication: Patient value: Perspectives from the advocacy community.
Sitting together with patient advocates from around the world to discuss what brings value to patients was eye-opening. We explored the intricacies of our health system realities and distilled what some of the universal components or best practices are commonly shared within all these systems.
In many ways, this collaborative journal article was in response to methodologies on the value frameworks created by the American Society of Clinical Oncology (ASCO) and the European Society for Medical Oncology (ESMO.) Advocates felt strongly that patient voices should be heard and valued deeply throughout the whole process of creating the value frameworks. Both ASCO and ESMO followed up on their original publications with updates that reflect and integrate some of the ideas outlined in our publication. You can see their updates below:
As a group of international advocates, we acknowledged that issues central to patients are not always the same ones prioritized by those who make decisions based on cost, or even pure research, without patient-reported outcomes. We wondered aloud how decisions can be made for us but without us. This publication was a way to take action and assert our viewpoints in the global dialogue happening today.
See how we are bringing the patient voice to value frameworks. Read the publication and share your feedback in the comments.
The Max Foundation is a leading global health nonprofit organization dedicated to accelerating health equity. For 28 years, Max has pioneered practical, scalable, high-quality solutions to bring life-extending treatments and patient-centered health care to more than 100,000 people living with cancer and critical illness in low- and middle-income countries. Max believes in a world where all people can access high-impact medicines, where geography is not destiny, and where everyone can strive for health with dignity and with hope.
Rising Sun 2018 has more than 60 participants from 18 countries, consisting of patient leaders, physicians, pharma representatives, advocates, caregivers, and volunteers. Growing beyond our original scope of capacity building, this year we have brought Rising Sun to another level: Access to Treatment is Access to Life – Everyone Has a Role!
As part of our 20th Anniversary Celebration on October 19th, The Max Foundation was honored to have Princess Dina, President-elect of the Union of International Cancer Control, reflect on our global efforts over the last two decades. We share her letter here with gratitude and humility. “Lack of access to treatment” is a five-word sentence that is….
Understanding and recognizing the inequities in cancer care around the globe underpins the 2022-24 World Cancer Day theme to Close the Care Gap. The needs are urgent, and the opportunity exists to make progress toward equitable cancer care for all. We must listen to the perspectives of people living with cancer and let those lived….
