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

APPISx Australia brought together patient advocates at the Cardiac Society of Australia and New Zealand (CSANZ) annual scientific meeting in Adelaide.
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.
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.
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.
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

APPIS assembled a group of six cardiovascular patients and caregivers to strengthen patient voice by learning from their personal experiences.
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

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.
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.

2023

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.
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

APPISx Taiwan gathered 40 leaders from 13 patient advocacy groups of various disease areas, HTA body representatives, and pharmaceutical economics experts.
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.
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.

2023

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.
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

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.
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.
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.
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

During APPISx, representatives from four regions attended a presentation on metastatic breast cancer innovative treatment knowledge and health literacy.
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

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.
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.
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

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.

2023

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.
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

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).
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

Patient organizations have a low level of technical knowledge on Health Technology Assessment (HTA) submission requirements.
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.
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

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.
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
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.

ABOUT APPISx

Ram Khandelwal​

APPISx

Ram Khandelwal