ABOUT APPISx
Reflecting on our journey since APPISx, we feel excited to see how far we've come. The "Heart Health India Foundation" has now been officially registered as an NGO in India. We're optimistic about maintaining this momentum and cherish our collaboration. APPISx is a game changer!
Ram Khandelwal
Founder, Heart Health India Foundation
APPISx unites healthcare stakeholders in the country to address the unique challenges in the diverse healthcare system archetypes found across Asia Pacific, Middle East, and Africa. APPISx, in each country, plays a vital role in bringing together local patient organizations and healthcare stakeholders to delve deeper into urgent access challenges faced by patients, and partner together on actionable solutions. Held throughout the year, these sessions aim to form partnerships that incorporate patients’ voices in healthcare decision-making and solutions.
APPISx
Click on the tabs below to read more about APPISx in the different countries.
2023
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APPISx Australia brought together patient advocates at the Cardiac Society of Australia and New Zealand (CSANZ) annual scientific meeting in Adelaide.
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Meeting attendees included representatives from patient organizations hearts4heart, Heart Support-Australia, Heartbeat of Football Foundation, and cholesterol patient advocate, Luke Elias, all sharing a passion for improving outcomes for people and families with unhealthy cholesterol in Australia.
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The group collaborated for a patient-centered discussion to identify potential initiatives to improve outcomes for Australians with atherosclerotic cardiovascular disease (ASCVD), and to live a life unblocked.
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Despite the high prevalence of ASCVD, currently, there is no united patient voice advocating for better cholesterol management to prevent ASCVD in Australia. ASCVD remains an underlying cause of 85% of heart attack and stroke-related deaths.
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APPISx Australia was joined by healthcare system partners and healthcare professionals to discuss patient needs from a lived experience perspective. Conversations looked beyond just awareness to tackle behaviour change and achieve real progress in managing cholesterol risk.
Reach out to info@appisinitiative.com if you want to collaborate or find out more information on how to take part in APPISx sessions in your country.
2023
Setting up the first cardiovascular patient organization in India
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APPIS assembled a group of six cardiovascular patients and caregivers to strengthen patient voice by learning from their personal experiences.
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Representatives from Ankylosing Society Welfare Organisation India, CureSMA India, Friends of Max, and the Blue Circle Diabetes Foundation brought their expertise and experience to help patients and caregivers establish The Heart Health India Foundation, the first cardiovascular patient organization in India.
Improved physician-patient communication on breast cancer through co-created solutions
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APPIS also partnered with breast cancer patient organization representatives and physicians to identify ways and key aspects to improve patient-physician dialogues and eventually quality of life.
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Collectively, the participants co-created a Wellbeing Tracker to empower breast cancer patients to measure their quality-of-life score at regular intervals and have meaningful conversations with their cancer treatment team , with an aim to roll out across India in collaboration with other patient groups.
Reach out to info@appisinitiative.com if you want to collaborate or find out more information on how to take part in APPISx sessions in your country.
2024
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APPISx Japan hosted a transformative event on October 6th, 2024, bringing together 50 dedicated participants in pursuit of organizational sustainability for patient advocacy groups.
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With the captivating theme, "Sustainability of the Organization," our main speaker, a revered sports personality and former Captain of the Japan National Team, delivered a thought-provoking discourse on "Leadership and Organizational Management."
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Patient Advocacy Groups (PAG) took center stage as their representatives passionately shared their journeys. From the poignant struggles faced by Cancer Parents group in preserving the founder's mission and legacy to the inspiring resilience demonstrated by One Step patient advocacy group amidst a grant application setback, their stories resonated deeply with the audience.
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APPISx Japan fostered connection and collaboration, enabling attendees to forge meaningful relationships with an array of PAGs, igniting a powerful ripple effect in the pursuit of improving care and support for patients.
2023
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APPISxJapan’s hybrid session engaged 5 patient advocacy groups in disease areas covering esophageal cancer, chronic myelogenous leukemia (CML), psoriasis, allergies, and other autoinflammatory diseases.
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Participants learned that for shared decision-making (SDM) to be successful, patients must first have the ability to obtain, understand, and utilize correct information.
Reach out to info@appisinitiative.com if you want to collaborate or find out more information on how to take part in APPISx sessions in your country.
2024
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APPISx Taiwan gathered 40 leaders from 13 patient advocacy groups of various disease areas, HTA body representatives, and pharmaceutical economics experts.
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Through interactive discussions, we explored the patient expert training mechanisms in the UK and further discussed the training needs and priority issues for patient experts development in Taiwan.
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The key points and conclusions discussed during the workshop were also shared with HTA units as references for optimizing the mechanisms for patient involvement in Taiwan.
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2023
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APPISx gathered 30 patient leaders representing 12 diverse patient organizations to participate in a workshop led by Professor Hsiao from National Taiwan University, alongside a representative from the Center of Drug Evaluation which is in charge of proposing the Health Technology Assessment (HTA) and Health Technology Re-assessment framework for the National Health Insurance Administration.
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Together, participants co-created a journal article for the Formosan Journal of Medicine that underscores the current challenges associated with amplifying the impact of patients’ perspectives in the local HTA.
Reach out to info@appisinitiative.com if you want to collaborate or find out more information on how to take part in APPISx sessions in your country.
2024
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APPIS x Thailand convened 21 breast cancer patient advocates from across the country for a meeting titled "Amplifying Voice: Igniting Change in Health Literacy for Empowered Breast Cancer Patient Advocates," building on the success of last year's event and the "Let Her Smile" campaign.
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The meeting aimed to tackle patient challenges and empower advocates. Oncologists provided updates on breast cancer treatments, offering a comprehensive view of the current landscape.
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Patient advocates engaged in discussions on the draft translated Thai ESMO guidelines, assessing the need for further language adjustments to enhance accessibility. They also discussed the mBC booklet initiative, aligning on content and desired information. Both projects strive to increase accessibility, raise awareness, and empower more patient advocates across Thailand for long-lasting change.
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Patient involvement and understanding their needs played a central role in the meeting's success, establishing a solid foundation for future partnerships to address health literacy challenges in Thailand.
2023
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During APPISx, representatives from four regions attended a presentation on metastatic breast cancer innovative treatment knowledge and health literacy.
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Patient groups met to discuss the evolving role of patient advocacy in shaping health policy in Thailand. A panel comprised of patient influencers gave an in-depth look at health literacy using digital platforms to raise awareness and share best practices, and ultimately gained new materials and toolkits for disease awareness campaigns.
Reach out to info@appisinitiative.com if you want to collaborate or find out more information on how to take part in APPISx sessions in your country.
2023
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Over 36 patient advocacy groups and representatives from Egypt, Kingdom of Saudi Arabia and Gulf countries joined forces to create a roadmap for the vital role of patient groups in health policy shaping.
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The session started off with a discussion about how patient advocacy groups can effectively play an important role in bridging the dialogue with payers and governments.
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By sharing our best practices and the success stories of patient advocacy groups like Egypt MS Care and Bahrain Sickle Cell Society, we showcased how patients and patient advocacy groups can make their voices heard when it comes to the important decisions that involve their health.
Reach out to info@appisinitiative.com if you want to collaborate or find out more information on how to take part in APPISx sessions in your country.
2023
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Several patient organizations, including Campaign for Cancer, Axial Spondyloarthritis Association of South Africa (ASASA), The Cancer Association of South Africa (CANSA), and others attended APPISxSouth Africa to work towards elevating patient voice in shaping healthcare policy. Lauren Pretorius, a cancer advocate, spoke about challenges faced by patient groups and the importance of patient voice. The session concluded with next steps and an aim to define an engagement plan.
Reach out to info@appisinitiative.com if you want to collaborate or find out more information on how to take part in APPISx sessions in your country.
2024
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On 28 August, APPISx Korea organized the "Shine a light on HS: Patient Story Workshop for Patients with Hidradenitis Suppurativa (HS)".
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At this workshop, 7 HS patients joined forces with dermatologist Professor Hyewon Kim from Hallym University Gangnam Sacred Heart Hospital and Dr. Juyoung Lee, a renowned art therapist, to share their personal journeys with the condition and collectively shape the message for an upcoming disease awareness campaign.
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Dr. Juyoung Lee, spearheaded 2 innovative art therapy programs titled "Shining 'Light' on My Body” and "Adding 'Light' to My Life," that employed music and visual arts. In these sessions, patients expressed their complex emotions associated with their condition through colours, discussed their individual struggles, concerns and explored the meaning and direction of their life living with HS.
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In the "Living with Hidradenitis Suppurativa" session, Professor Hyewon Kim shared more on the medical advances in HS, offered practical advice on effectively managing the condition and answered questions posed by the attendees.
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This workshop provided patients with an opportunity to revisit their condition, reflect on their experiences, and share stories to inspire authentic narratives for the HS awareness campaign.
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The takeaways from this workshop will be transformed into a compelling web drama aimed at raising awareness about HS, while delivering messages of empathy and support to HS patients, ensuring they feel understood and encouraged throughout their journey.
2023
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APPISxSouth Korea convened the former Chief Secretary of the National Assembly, Mr. Minsik Kim with 15 patient leaders from patient organizations representing a spectrum of diseases, including psoriasis, lung cancer, and leukemia. The session explored the gaps between patient organizations and policymakers, reaching an agreement that more patient involvement in policy shaping is needed.
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Another meeting was held in South Korea to discuss newborn screening for Spinal Muscular Atrophy (SMA). Representatives from various organizations, including the Korean Organization for Rare Disease (KORD), discussed creating a whitepaper and holding a policy seminar.
Reach out to info@appisinitiative.com if you want to collaborate or find out more information on how to take part in APPISx sessions in your country.
2023
Amplifying breast cancer awareness in the Philippines through effective health reporting
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To advance the mission of enhancing survival rates and improving the journey for breast cancer patients in the Philippines, APPIS organized a two-day workshop in partnership with the Philippine Press Institute (PPI), ICanServe Foundation, and the Pharmaceutical & Healthcare Association of the Philippines (PHAP).
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The workshop brought together 60 local journalists to deepen their understanding of breast cancer, existing policies, and innovative advancements in treatment options. By providing accurate and updated health information, the workshop empowered journalists to effectively disseminate this knowledge to patients and the public, helping them to make better informed decisions around breast cancer.
2022
Capacity building with a Psoriasis organization in the Philippines
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Patient organizations have a low level of technical knowledge on Health Technology Assessment (HTA) submission requirements.
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To empower patient organizations with knowledge on the HTA process, APPIS hosted capacity building and technical workshops on HTA and evidenced-based support with psoriasis organization in the Philippines.
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The outcome resulted in an improved HTA submission and enabled the National Psoriasis Care Act to be approved.
Reach out to info@appisinitiative.com if you want to collaborate or find out more information on how to take part in APPISx sessions in your country.
2024
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APPISx Sub-Saharan Africa (SSA), took place on 6th June 2024 with 144 participants in attendance. The virtual event brought together prominent Patient Advocacy Groups from across the SSA region to share experiences and insights on navigating the healthcare landscape.
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Notable speakers and attendees included: Elizabeth Denyoh, Chairperson Elect, International Diabetes Federation, Rolf Hansen, Cancer Association of Namibia & Palliative Care Namibia, Runcie C. W. Chidebe, Project Pink Blue Initiative, Nigeria, Edward Konzolo, Stroke Association of Kenya, Timi Edwin, Crimson Bow Sickle Cell Initiative, Nigeria, and Dana Chengan, EDYCS Epilepsy Group, Mauritius, with representation from the Honourable Commissioner for Health, Lagos Sate Nigeria
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Key discussion topics included sourcing funding for patient advocacy activities, promoting health literacy, and the affordability of healthcare services.
Reach out to info@appisinitiative.com if you want to collaborate or find out more information on how to take part in APPISx sessions in your country.
2024
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The first APPISx Malaysia brought together close to 50 breast cancer survivors and caregivers for an event titled “Gift of Time: Live Well, Live Longer”, which is the second in a series of similar events that will be held throughout 2024 in several regions including the north and south of Malaysia
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Notable speakers and attendees included: patients and caregivers from Penang Adventist Hospital and Pink Penang Breast Cancer Support Group, Dr Ang Soo Fan and Dr Kiley Loh, clinical oncologists from Penang Adventist Hospital and representatives from the National Cancer Society Malaysia Selvamalar Kanagasundaram, Manager, Clinical Services, CARE Department and Dr Dalilah Kamaruddin, Head of External Services, CARE Department.
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Aimed at improving health literacy amongst patients and caregivers, Dr Ang Soo Fan and Dr Kiley Loh presented a comprehensive overview of the breast cancer landscape in Malaysia including innovative treatment options. Selvamalar Kanagasundaram shared some of NCSM’s initiatives to support cancer survivors and Dr Dalilah Kamaruddin presented a wellness talk focusing on how to improve mental and physical well-being as a breast cancer survivor.
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Discussions on the need for a robust peer support network to provide psychosocial support for breast cancer patients and a platform for smaller patient advocacy groups to come together in a stronger, unified voice to advocate for the needs of patients were some of the shared stakeholder goals that came up in APPISx Malaysia.
Reach out to info@appisinitiative.com if you want to collaborate or find out more information on how to take part in APPISx sessions in your country.