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 27 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.
We’ve already seen lots of activity around the world this spring: The first gastrointestinal stromal tumor patient meeting in Hyderabad, India; storytelling workshops where people facing cancer learn to share their experience with dignity and hope; and the Malaysia patient team takes their gathering public with a great picnic! See what else has been happening at The Max Foundation during the first part of 2016.
People, by nature, are not perfect and sometimes we forget how to love each other well. The dinner at the Rising Sun 2015 meeting prepared by MaxSmiles Thailand, was a reminder to me. Admittedly, I attended the dinner with the intention of eating as much Thai food as I could. Wirat, Thailand Senior MaxStation, reassured me that I would not be disappointed that night. He was totally right; who would’ve thought the dinner would feed my soul.
Having a baby is a major decision, especially for Thao from Vietnam, a cancer patient who had to pause her treatment in order to have a safe pregnancy. Thao shares how she found support through her patient group, her family, and The Max Foundation.
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