APPIS: An initiative led by patient organizations for patient organizations
The Asia Pacific Patient Innovation Summit (APPIS) publishes a whitepaper, which serves as a blueprint to help patient organizations improve their approach to sustainable funding, digitalization, and multi-stakeholder partnerships.
APPIS is a unique collaborative partnership between Novartis and the patient community that aims to address the evolving capability needs of patient organizations and to drive changes in healthcare systems in Asia Pacific and beyond. Held in March 2021, the inaugural region-wide Summit saw over 880 participants throughout the three-day event, representing more than 300 patient organizations across 36 countries.
India had the highest number of patient organizations (PO), with over 60 of them who participated in the summit. Majority POs in the country are highly experienced in patient-related education & information and offering patient/caregiver support. There is an active interest from these POs in sharing means of psychological support to patient/caregiver with other POs as they take pride in being an expert at it.
Funded by Novartis and led by patient organizations, the APPIS Initiative is continuing to engage the patient community via ongoing capability modules offered by APPIS partners – Rare Cancers Australia (RCA) and the European Patients’ Academy on Therapeutic Innovation (EUPATI).
It focuses on partnering with the patient community to address the evolving capability needs of patient organizations across the Asia Pacific region and beyond.
The APPIS initiative aims to address common challenges faced by patient organizations and enable deep-dive discussions around local needs so that the patient community can be more impactful.
APPIS: Examining the capability building gaps of Patient Organizations
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.
Thalassemia Patients Advocacy Group (TPAG), India is an example of a patient organization that is delivering its mission of “protecting the overall interests of thalassemics in India and preventing thalassemia” by driving advocacy through strategic partnerships. These partnerships particularly helped TPAG during the pandemic that saw the outflow of a large amount of corporate and government resources towards COVID-19 related initiatives. To cater to its larger objective of Safe Blood for All, TPAG carries out continuous engagement with industry bodies and corporates interested in the subject.Thalassemia Patients Advocacy Group (TPAG), India is an example of a patient organization that is delivering its mission of “protecting the overall interests of thalassemics in India and preventing thalassemia” by driving advocacy through strategic partnerships. These partnerships particularly helped TPAG during the pandemic that saw the outflow of a large amount of corporate and government resources towards COVID-19 related initiatives. To cater to its larger objective of Safe Blood for All, TPAG carries out continuous engagement with industry bodies and corporates interested in the subject.
