On 10 October 2023, the ISPOR 2023 Patient Representatives Roundtable – Asia Pacific convened 28 stakeholders from 12 Asia Pacific countries, representing multiple perspectives (chronic and rare disease patient organizations, researchers, health technology assessment bodies, and government agencies). This year's theme is 'The Patient Lived Experience: How it's Defined and Constructs of Tolerance and Capacity Building for Improving the Patient Voice.' Topics of discussion included the value of real-world data from patient organizations and their applications in China, health equity and cultural safety, the importance of consumer and patient engagement, and how different stakeholders propose ways to bridge gaps in health equity.
Patient Representatives Roundtable – Asia Pacific 5th Anniversary
The Patient Representatives Roundtable – Asia Pacific held its 5th anniversary this year. Patients are a critical part of the journey to improve the quality of evidence used in the decision and to elevate the patient's voice in healthcare decisions worldwide. Starting in 2018, each consecutive year built on the previous year’s theme and further explored the role of the patient in the healthcare system.
- 2018 (Tokyo): Patient Involvement in Decision Making – Multistakeholder Perspectives and Mapping the Landscape in the Asia Pacific Region
- 2019 (Beijing): Current role of patient participation in HTA and the elements and methodologies necessary for patient participation in HTA
- 2020 (Virtual): Patient Involvement in HTA in the Asia-Pacific Region – lessons learned and challenges
- 2021 (Virtual): Use of Digital Health to Improve Access to Care and Repackaging Learnings to Make Healthcare Access Better
- 2022 (N/A)
- 2023 (Virtual): The Value of Patients Lived Experience: Constructs of Tolerance and Capacity Building for Improving the Patient Voice
Presentations on The Value of Patient’s Lived Experience: Constructs of Tolerance and Capacity Building for Improving the Patient Voice
Jenny Zhang, Director of International Affairs, House086, which is affiliated with Hongmian Cancers and Rare Disorders Charity Foundation of Guangzhou, China, and Dr Kiri Prentice, Deputy Chief Medical Officer Māori, Te Pātaka Whaioranga – Pharmac in New Zealand, provided attendees with presentations on the importance of patients’ lived experiences. In “The Value of Real-Word Data from Patient Organization and its Application in China,” the speaker discussed the importance of involving patients early in cancer research and strengthening patient education and patient services based on patient data. The speaker emphasized the significance of patient involvement in health technology assessment (HTA), sharing, collaboration, and patient advocacy for future research with patient data. Furthermore, the speaker acknowledged that data is not the end; it helps researchers discover patient needs, improves services, and initiates real change in the real world.
The speaker from “Health Equity and Cultural Safety: Why Consumer Engagement is Essential” discussed the importance of valuing voices, engaging in cultural safety, and implementing our values in action. Additionally, there has been a shift away from the emphasis on cultural competence, which consists of knowledge, skills, and attitudes towards cultural safety. Dr Prentice defined cultural safety as a self-reflective practice of awareness of bias, power imbalances, and systemic issues. The speaker highlighted that health equity cannot be achieved without cultural safety. Additionally, the Dr Prentice emphasized values such as connecting, listening, stewardship, active protection, and learning together to promote consumer and patient engagement. It is essential to make decisions with patients rather than for them. Furthermore, we cannot achieve collective learning if we exclude.
Considerations for Bridging Gaps in Health Equity
- Structural inequity exists at every level and in every system.
- Patients may hesitate to access healthcare services due to previous experience, trauma, and distress with the current system.
- Limited funding and financial support for patient-led organizations can hinder their efforts and visibility and escalate burnout among patient advocates.
- Patient advocacy groups are often a hidden, unpaid workforce. Are patient voices being valued if we do not remunerate them?
Conclusions:
It is essential to elevate the patient's voice in healthcare decisions around the world. Often, the responsibility of capacity building is placed on patients and patient organizations; however, capacity building must also be utilized within healthcare systems. While there is variation in how patient voices are used in healthcare across the Asia Pacific region, more capacity-building is needed among healthcare systems. Incorporating patient perspectives and implementing cultural safety is essential for achieving health equity.
Acknowledgments
This summary was developed by Sahar Alam, MPH, Manager, ISPOR Scientific and Health Policy Initiatives. We would like to thank the following individuals for their direction and leadership – Pru Etcheverry, ONZM, Chair of the ISPOR Patient Representatives Roundtable – Asia Pacific, Clarissa Cooblall, MPH, Director of ISPOR Scientific and Patient Initiatives, and Laura Pizzi, PharmD, MPH, ISPOR Chief Science Officer. We greatly appreciate all speakers – Jenny Zhang, Director of International Affairs, House086, which is affiliated with Hongmian Cancers and Rare Disorders Charity Foundation of Guangzhou, China, and Dr Kiri Prentice, Deputy Chief Medical Officer Māori, Te Pātaka Whaioranga – Pharmac in New Zealand, and all attendees for their participation and valuable contributions.
Additional Information:
The ISPOR Patient Representatives Roundtable provides a platform for patient representatives to discuss issues and challenges of patient involvement in healthcare research and decision-making processes with other key stakeholders such as researchers, HTA bodies, payers, decision-makers and policymakers, and pharmaceutical industry representatives. To learn more about ISPOR's Patient Engagement in Health Economics and Outcomes Research (HEOR) initiative, visit our website.