We left off last time talking about how critical it is for the patient perspective to inform discussions about value frameworks and what constitutes the value of one medicine or treatment pathway over another. We said there are a lot of frameworks, conversations, and other initiatives already out in the healthcare marketplace about value, without a mechanism to incorporate the needs or interests of the individual patient. We also started talking about how the patient advocacy community can begin to take steps to inform the development of value frameworks to ensure the patient perspective is accounted for.
“Patient Value: Perspectives from the advocacy community”, co-authored by global oncology advocacy leaders in the peer-reviewed journal Health Expectations, provides a blueprint for how industry, providers, payers and patient communities can come together and collaborate on a path forward for ensuring the patient perspective informs the discussions about how the value of healthcare treatment can be best defined. In this benchmark-setting paper, for the first time, leaders representing various tumor types describe an approach for ensuring that a wide range of patient-defined therapy outcomes are incorporated within the current clinical and cost-centric value frameworks. The authors make the compelling case that patient-informed value frameworks will result in better outcomes, which all healthcare stakeholders will benefit from. They provide a clear map of seven key steps patient advocacy communities can take to make sure a cacophony of patient experiences and values can be melded together into a value framework that creates a common set of standards, but that also ensures no single patient perspective is excluded. The steps include showing the benefits to the clinical community, advocating for patient organizations and individual patient representation on key value framework guidelines panels, incorporating real-world patient evidence data into value, and shifting to more patient-centric language when formulating future value frameworks
We laud the important contribution this paper makes towards advancing patient insights into value definitions and its recognition by a key peer-reviewed industry journal that demonstrates the ascendancy of patient inclusion as an issue that will continue to have reverberating impact on the future landscape of healthcare delivery. We sincerely thank the authors for their tireless dedication, time, and work in bringing this critically important research to fruition.
Prior to joining VOZ, Tim Turnham worked extensively in nonprofit health care, most recently spending a decade leading oncology patient advocacy organizations. He has written and spoken about value from the perspective of the patient.
Tim Turnham, PhD is a vice president at VOZ. Tim approaches patient engagement with the conviction that patients who are well informed and well supported live longer and better. He has a record of success in finding mutually beneficial connections between industry and patient advocacy groups to help achieve this goal. Tim has worked in pediatrics, HIV/AIDS, disabilities, and oncology, maximizing the insight and value that patient advocacy groups and industry can achieve through collaboration. Tim has spent countless hours listening to patients and caregivers, and helping give perspective to their experiences. In addition, Tim has worked closely with academic researchers, including convening two summit meetings that resulted in white papers on critical issues of cancer treatment. Tim holds a BA in microbiology, an MDiv, and a PhD in biblical ethics.