Policy is often created in a vacuum, by lawmakers who are far removed from the people affected by the issues on the ground. When it comes to the design and implementation of universal health coverage (UHC), it is essential that patients have a say in the policies and programs that will greatly affect them. As the voice of the global health community, Global Health Council, along with the Medtronic Foundation, Novo Nordisk and members of the NCD Roundtable, held a side event during the 74th session of the United Nations General Assembly (UNGA) on UHC centered around patients. “Turning the Tables: Patient Perspectives on UHC“aimed to flip the script by having patients lead the dialogue on their vision for health for all.
The event started with a keynote by Tony Kimata, a patient advocate with the NCD Alliance. As someone affected by diabetes, he had these words to say: “Patients want to share their stories, they’re experts in their conditions.” Taking this call to heart, the event continued to feature a mix of patients, program implementers, and policymakers alike.
Global Health Council’s Patient Champion Abdi Hussein, a community health worker (CHW) and refugee, co-moderated the first panel with Maia Olsen of Partners in Health. Panelists Dr. Arti Patel Varanasi of Advancing Synergy, Dr. Janna Patterson of the American Academy of Pediatrics, and Kate Thomson of the Global Fund Action Network focused comments on program implementation and storytelling. Dr. Patterson mentioned the importance of storytelling plays when it comes to data. “Data is important, but those stories allow us to put a patient-centered focus on how we provide care,” she stated. Dr. Varanasi, who dealt with the care of a family member affected by a noncommunicable disease, stressed the importance of not just hearing patients, but listening to them as well. That way, patients would be participating in a dialogue, and not just a one-sided conversation. Ms. Thomson, a patient turned program implementer, spoke about the power that stories played in her journey to becoming a program implementer with the Global Fund to Fight AIDS, Tuberculosis and Malaria. She was also frank about the privilege she had as a youth and patient working on HIV policy in the 90s – and called for policymakers in the room and beyond to make room for and elevate the stories of patients and youth who are working in the space.
By listening to stories of patients, it is easier to design programs that will be effectively used by patients. Mr. Hussein added that as a CHW working with refugee populations in the Seattle metro area, he was able to design a culturally appropriate exercise program for diabetes patients by listening to the patient concerns. After creating an exercise program centered around patient needs, rates of participation on the program skyrocketed, greatly improving the health of the patients.
Program implementation is just one part of the equation of UHC. Another key piece is the policy that affects what health-related programs and initiatives are put into place. The second panel was co-moderated by Global Health Council’s Patient Champion Phumlani Kango, and Priya Kanayson of the NCD Alliance. They spoke with Dr. Michael Bukenya Iga, a Member of Parliament of the Republic of Uganda, Dr. Preecha Prempree of Thailand’s Ministry of Health, and Jess Daly of the Medtronic Foundation on how patient voices can be included in health policy. Ms. Kanayson highlighted how NCD Alliance supports patient participation in policymaking through advocacy initiatives. Mr. Kimata, the keynote speaker, started doing advocacy with NCD Alliance as a patient. Ms. Daly also highlighted the role that Medtronic Foundation plays in supporting patient storytelling initiatives so that they too can have access to policymakers and advocate for inclusive policies. Mr. Kango shared his story of using PrEP as a gay man in South Africa and how he works with the community to encourage its use more widely. Dr. Prempree and Dr. Bukenya shared their thoughts of how to best serve patients with NCDs and the need to provide decentralized services for chronic illnesses. Khuat Thi Hai Oanh of the Center for Support Community Development Initiatives closed out the event with an emphasis on the need to build on patient stories. As we continue our quest for UHC, we need to keep the patient perspective in mind as as countries work towards achieving UHC. This means including patients at the table, listen to their voices, and act upon their recommendations. That is how we will achieve Health For All.
This event was put on with support from Global Health Council and our co-sponsors the Medtronic Foundation and Novo Nordisk. We would also like to thank our partners the NCD Alliance, Partners in Health, NCD Child, the American Academy of Pediatrics, Advancing Synergy, and Rabin Martin for supporting this event.
This post was written by Nyana Quashie, Senior Associate, External Affairs at Global Health Council.