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ABOUT APPISx
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.
Watch this video to learn more 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
Click on the tabs below to read more about APPISx in the different countries.
2023
Atherosclerotic cardiovascular disease (ASCVD) remains an underlying cause of 85% of heart attack and stroke-related deaths. Despite its high prevalence, there is currently no united patient voice advocating for better cholesterol management to prevent ASCVD in Australia.
In 2023, APPISx Australia brought together representatives from patient organizations (including hearts4heart, Heart Support Australia, Heartbeat of Football Foundation), cholesterol patient advocate Luke Elias, healthcare system partners and healthcare professionals, at the Cardiac Society of Australia and New Zealand (CSANZ) annual scientific meeting in Adelaide.
The patient-centered discussion focused on initiatives to improve outcomes for people and families with unhealthy cholesterol, looking beyond just awareness to also tackle behavior 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
Cardiovascular disease (CVD) is the leading cause of death in India, yet until 2023 there was no dedicated CVD patient group in the country. When APPISx convened in India in 2023, they identified this lack of unified voice for the CVD patient community and agreed there was an opportunity to bring stakeholders together to strengthen the patient voice in this area.
Six CVD patients and caregivers came together to take action in addressing this unmet need. To help them on their journey, representatives from Ankylosing Society Welfare Organisation India, CureSMA India, Friends of Max, and the Blue Circle Diabetes Foundation shared their expertise and experience and provided valuable support including a design thinking workshop, which helped in creating Heart Health India Foundation, the first cardiovascular patient organization in India.
2023
APPISx India 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.
Together, 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 the aim of rolling out the tracker 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
APPISx Japan brought together 50 dedicated participants in pursuit of organizational sustainability for patient advocacy groups.
With the theme, "Sustainability of the Organization," the main speaker was revered sports personality and former Captain of the Japan National Team, who delivered a thought-provoking discussion on "Leadership and Organizational Management."
Patient Advocacy Groups took center stage as representatives passionately shared their own journeys, which other patient organizations could relate to. This included the struggles faced by Cancer Parents group to preserve the founder's mission and legacy, and Lung Cancer Patients' Association ‘One Step’ experiences in obtaining grants, despite setbacks.
APPISx Japan fostered connection and collaboration, enabling attendees to forge meaningful relationships with a variety of PAGs, igniting a powerful ripple effect in the pursuit of improving care and support for patients.
2023
APPISx Japan’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
In 2024, APPISx Taiwan brought together 40 leaders from 13 patient advocacy groups of various disease areas, HTA body representatives and pharmaceutical economics experts.
Through interactive discussions, the group explored the patient expert training mechanisms in place in the UK and discussed the training needs and priority issues for patient expert development in Taiwan. The key points and conclusions were shared with local HTA units, as references for optimizing the mechanisms for patient involvement in Taiwan.
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2023
APPISx Taiwan 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
In 2024, APPISx Thailand convened 21 breast cancer patient advocates from across the country for a meeting called "Amplifying Voice: Igniting Change in Health Literacy for Empowered Breast Cancer Patient Advocates."
The meeting aimed to tackle breast cancer patient challenges, identify unmet needs and empower advocates across Thailand for long-lasting change. Oncologists provided updates on breast cancer treatments, and patient advocates reviewed the draft translated Thai ESMO guidelines, discussing the need for adjustments to increase understanding. The meeting highlighted the next steps, including the development of an mBC booklet – a simplified version for distribution across Thailand.
Patient centricity played a central role in the meeting's success, establishing a solid foundation for future partnerships to address health literacy challenges in Thailand.
2024
In 2024, APPISx Thailand held an event aimed to reduce barriers to breast cancer care, particularly for metastatic breast cancer (mBC) patients in different provinces around Thailand. The event invited The Suandok Breast Cancer Network (SBCN) to share best practice around patient navigation, including referral programs and a multidisciplinary team approach towards uniform care.
Through the ‘think tank’ workshop and lecture, the 30+ hospital representatives, together with SBCN, worked together to identify unmet needs, share learnings and discuss solutions. The event was designed to inspire and encourage attendees to return to their hospitals and help facilitate changes to reduce delays in breast cancer diagnosis and treatment.
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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 began with a discussion about how patient advocacy groups can effectively play an important role in bridging the dialogue with payers and governments. Patient advocacy groups including Egypt MS Care and Bahrain Sickle Cell Society shared best practices and success stories, and showcased how patients and patient advocacy groups can make their voices heard when it comes to important decisions involving 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.
2024
Recognizing the limited awareness of ASCVD and its associated risk factors, this APPISx South Africa event brought together diverse stakeholders including a highly recognized patient advocate who is represented on the Presidential Health Compact.
The event was designed to provide a platform to discuss and address pain points in the ASCVD patient journey, while increasing health literacy and elevating the role of patient advocacy for improved patient outcomes. An important consideration that came through this event was the need to empower patients through education and awareness, and for patients to take responsibility for their outcomes.
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 Korea organized "Shine a light on HS: Patient Story Workshop for Patients with Hidradenitis Suppurativa (HS)".
Seven 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 living with the condition and together, shape the message for an upcoming disease awareness campaign.
During the session, patients had the opportunity to share stories, express their complex emotions and discuss their experiences and struggles living with HS. They also learnt about medical advances in HS, with practical advice on managing the condition and an opportunity to ask questions.
The takeaways from the workshop will be transformed into a web drama aimed at raising awareness about HS, while ensuring patients feel understood and encouraged throughout their journey.
2023
APPISx Korea convened the former Chief Secretary of the National Assembly, Mr. Minsik Kim, with 15 patient leaders from patient organizations representing a range 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 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 further advocacy initiatives towards National Assembly and the government.
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
In the Philippines, cardiovascular disease (CVD) is the most prevalent noncommunicable disease. Acknowledging the influential role of media in mobilizing public action, APPISx Philippines convened over 40 journalists for a dedicated media workshop aimed at promoting the significance of heart health.
The event was organized in partnership with the Philippine Press Institute (PPI) with the aim of enhancing CVD health literacy and empowering media to raise awareness about CVD and its risk factors, particularly the management of LDL-C to mitigate cardiovascular risk. The initiative was also designed to call for policy change and resulted in the broadening of insurance coverage for Filipino CVD patients.
2023
To advance the mission of enhancing survival rates and improving the journey for breast cancer patients in the Philippines, a workshop was organized in partnership with the Philippine Press Institute (PPI), ICanServe Foundation, and the Pharmaceutical & Healthcare Association of the Philippines (PHAP).
The two-day ‘Think PINK’ workshop brought together 60 local journalists to deepen their understanding of breast cancer, existing policies and innovative advancements in treatment options. This resulted in 40 pieces of earned media coverage with a reach of 76 million, as well as significant policy changes such as the PhilHealth inclusion of mammogram and ultrasounds for breast cancer diagnosis. The initiative earned internal global recognition for best practice.
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2022
Patient organizations generally have minimal technical knowledge about Health Technology Assessment (HTA) submission requirements. APPIS and Novartis Philippines partnered with Psoriasis Philippines, the Philippine Coalition of Psoriasis Disease, and medical societies to host a multi-stakeholder workshop designed to incorporate the patient’s voice in HTA decision-making in psoriasis.
The result was the drafting and approval of House Bill (HB) No. 9821, otherwise known as the National Psoriasis Care Act, which seeks to establish a National Psoriasis Care and Control Program (NPCCP) that would serve as the framework for all psoriasis-related government activities, as well as the identification of a Government HTA champion.
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
In June 2024, a virtual event brought together prominent Patient Advocacy Groups from across the Sub-Saharan Africa (SSA) region. This APPISx, joined by 144 participants, focused on sharing experiences and insights in navigating the SSA healthcare landscape with topics including sourcing funding for patient advocacy activities, promoting health literacy and the affordability of healthcare services.
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 State Nigeria.
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 Malaysia brought together over 50 breast cancer survivors and caregivers Nationwide for “Gift of Time: Live Well, Live Longer” – an event aimed to celebrate survivorship while improving health literacy amongst patients and caregivers.
Part of the Gift of Time workshops includes a comprehensive overview of the breast cancer landscape in Malaysia including innovative treatment options, initiatives to support cancer survivors and a wellness talk focusing on how to improve mental and physical wellbeing as a breast cancer survivor.
Shared stakeholder observations included the need for a robust peer support network to provide psychosocial support for breast cancer patients, as well as a platform for smaller patient advocacy groups to come together in a stronger, unified voice to advocate for the needs of patients.
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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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
In Vietnam, an APPISx seminar - ‘Rejuvenating communications in improving health literacy for better breast cancer care and women’s health’ - was attended by patient organizations and key Vietnamese health stakeholders including the Vietnam Medical Association, Vietnam Women's Union and various regulatory agencies under the Ministry of Health.
The event was followed by a ceremony to commemorate a three-year partnership between Vietnam Women's Union and Novartis Vietnam, who have joined forces to enhance breast cancer awareness in Vietnam. This patient-centric initiative will be developed by listening to the unmet needs of Vietnamese women and breast cancer patients when accessing information about the disease and will include community communications, events and social media 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.