The Asia Pacific Patient Innovation Summit (APPIS) has published its first whitepaper that examines the regional landscape for patient organizations and explores existing capability building gaps. The patient community-led report, ‘Partnering with patient organizations to address the unmet needs of patient communities in the Asia Pacific region and beyond’, aims to enable a greater understanding and recognition of the seminal role of patient organizations and the patient voice in shaping the future of healthcare, while providing a series of recommendations for patient groups:
- Build sustainable funding models, maximize key channels of funding, and use technology to reach new audiences, given that 83% of patient organizations surveyed noted that sustainable funding was a challenge.
- Embrace digitalization and social media to raise disease awareness (as reported by 82% of patient organizations) and improve access to health news and information (79%).
- Build strong relationships with key stakeholders through partnerships and collaboration.
Co-created by the APPIS Steering Committee, representing leading regional patient organizations and Novartis, the whitepaper leverages the results of a survey conducted to better understand the needs and capabilities of patient groups in the region. The survey captures the perspectives of 147 interviewees from patient organizations’ Boards and leadership teams, across 12 countries and territories in the Asia Pacific region and beyond.