In this insightful interview with BioPharma APAC, Ruth Kuguru, Executive Director of Communications & Engagement at Novartis for Asia Pacific, Middle East, and Africa, and a distinguished 2024 Council Member of APPIS, delves into the innovative approaches Novartis employs to tackle the complex healthcare challenges facing the region. Through a lens of collaboration and partnership, Kuguru shares how Novartis is working alongside a myriad of stakeholders to enhance health literacy, shape health policy, and prepare for the future of healthcare. From fostering the first cardiovascular patient organization in India to streamlining breast cancer care in the Philippines, discover how these efforts are making a tangible difference in the lives of patients across the APAC region.

Amidst commemorating women's contributions to healthcare and leadership, Kuguru's responses underscore the importance of collective action in creating equitable healthcare solutions, just in time for Women's Day celebrations.

How does Novartis collaborate with stakeholders to address access barriers and shape health policy in the region?

As a company, we know that success in reimagining medicine means doing it together with all those who contribute to the health outcomes of patients and that’s why we actively look for opportunities to collaborate to tackle some of the most pressing healthcare challenges. For people in Asia Pacific, Middle East and Africa (APMA), some of the biggest challenges are health disparities and inequity which often leave patients struggling to access the healthcare that they need, when they need it. Of course, these are huge and multifaceted problems, and not ones that any one entity can tackle alone – it will take organizations and stakeholders from a range of backgrounds and perspectives to come together and help take gradual steps towards real impact for patients. 

When I first sat down with my fellow Alliance & Partnerships for Patient Innovation & Solutions (APPIS) Council members back in 2020, this is what we resolved to do, by focusing on three key pillars: Health Literacy; Health Policy Shaping and Future Readiness. We sought to bring together a multi-stakeholder health community to prioritize action towards better outcomes in the Asia Pacific, Middle East and Africa across those pillars, and over the last few years I’m proud to say that we have seen these efforts take shape to help to break down barriers for patients on the ground. 

Through the different programs of the APPIS platform, we’ve been able to amplify patient voices in health policy in South Korea, Taiwan and South Africa, increase resources around health literacy for patient groups in Japan and Thailand, and support the development of data and digital infrastructure to streamline breast cancer screening in the Philippines. These are just some examples of impactful work that APPIS has enabled and supported, and none of these ongoing programs and activities that APPIS is involved in would be possible without a collective approach to creating solutions. 

How does the APPIS platform bring together diverse stakeholders to address access barriers for patients?

APPIS has gained momentum over the past four years and has now brought together over 2,000 people across more than 65 countries, including 400 patient organisations along with policymakers, payers, physicians, academics, health journalists and digital innovators, to collaborate on patient innovation and solutions. Our community comes together in a variety of ways, both in-person and virtually, throughout the year in each country and on a regional level. 

APPIS’ ongoing commitment includes our flagship APPIS Summit which will take place on 19 and 20 March 2024, APPIS Innovator Program, which supports patient organizations to scale their innovative patient solutions, APPISx which brings local stakeholders together to address healthcare challenges in their countries, and the APPIS online Resource Centre where curated information and resources are accessible to all. 

As part of the APPIS Council, we worked together to co-create the agenda for the APPIS Summit to ensure a wide range of perspectives are considered and to make sure that we have actionable sessions that drive patient innovation and solutions. This year, the two-day virtual Summit will once again focus on our three key themes of Health Literacy, Health Policy Shaping, and Future Readiness, featuring over 40 speakers from across the spectrum of healthcare. We hope that the Summit will be a catalyst for action-driven discussions and collaborations with new and existing APPIS community members.

How does Novartis prioritize forming partnerships with local healthcare stakeholders to address specific access challenges?

We understand that healthcare challenges do not have a one-size-fits-all approach and are best addressed by understanding the specific needs of local communities and the local context. Given the diversity of nations that sit within the Asia Pacific, Middle East and Africa, we knew that it would be critical to ensure the APPIS community were able to interact both regionally and locally in order to create impact. To this end, one key component of the APPIS platform, APPISx, brings together local patient organizations and healthcare stakeholders to address the unique challenges in their specific healthcare systems that are most relevant to the patients they support. 

In 2023, we held 11 APPISx sessions with more than 200 representatives from patient communities and other healthcare stakeholders, including policymakers, healthcare providers and health journalists, coming together to elevate the patient voice in healthcare decision-making. It’s inspiring to see collaborations manifesting into actionable solutions that positively impact patients in each country.

For example, the APPISx India community came together to support the establishment of the country’s first cardiovascular patient organization. Meanwhile in Taiwan, APPISx convened patient representatives, policymakers and healthcare providers to actively co-create 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 Health Technology Re-Assessment. Additionally in 2023, APPISx Philippines collaborated with the Philippine Press Institute to host a workshop on health and breast cancer reporting to promote public awareness on good health practices and disease prevention in breast cancer. All of these activities address a tangible local issue in a way that helped to elevate the patient voice and drive real change to improve the lives of local patients.

What impact has APPISx India had, particularly in forming India's first cardiovascular patient organization?

Cardiovascular disease (CVD) kills more than five people every minute in Asia Pacific, Middle East and Africa and is the leading cause of death in India, and yet until 2023, there was no dedicated CVD patient group in the country. When APPISx convened in India last year, this lack of a unified voice for CVD patients was a gap that they identified, and it was agreed that there was an opportunity to bring stakeholders together to strengthen the patient voice in this area.

Concurrently, Novartis’ Unblocked Movement, a multi-stakeholder initiative to unblock barriers to heart health, inspired a group of six CVD patients and caregivers to take action in addressing the unmet needs of CVD patients in the country. To help them begin their journey, APPISx India facilitated a design thinking workshop, extensive medical training sessions and connected the group with representatives from Ankylosing Society Welfare Organisation India, CureSMA India, Friends of Max, and the Blue Circle Diabetes Foundation. Leveraging on these patient organization’s expertise and experience, the representatives provided valuable support in helping the group establish the Heart Health India Foundation (HHIF), the first cardiovascular patient organization in India. 

The establishment of the HHIF is a great example of how bringing local partners together who understand the complexities of local challenges can help drive change and support better outcomes and experiences for patients.

In what ways does Novartis support patient organizations through the private sector and the APPIS Innovator Program?

One of the most meaningful parts of my role at Novartis has been working with the organizations that support patients in areas such as breast cancer, cardiovascular disease, spinal muscular atrophy and haematological diseases across APMA. The advocates within these organizations work tirelessly to improve outcomes for the people they serve, and they understand better than most, the day-to-day challenges that patients and their caregivers face. But unfortunately, their voices are often excluded in critical decision-making processes for health policies.  

Over the years, I have seen a growing appreciation from across the healthcare ecosystem of the importance of bringing patients into all aspects of the decision-making process and as a result, the growing power of patient voices. When we established the APPIS platform, we wanted to ensure that we worked together with patient groups to create the right tools to amplify their voice and scale their innovative patient solutions. With this mission in mind, in 2022 we established the APPIS Innovator Program to give recognition to patient organizations in the region that have excelled in improving patient access to the right information, treatment, and care and to support them in their growth. 

Every year, a panel of experts made up of patient leaders and healthcare experts, select the winning submission based on five key criteria: impact, innovation, potential to scale, fit to category, and progression. The winning patient organizations will enter a one-year partnership with Novartis to help scale their innovative patient solutions through coaching, access to topic experts in the APPIS network and financial support to bring them closer to achieving their mission of helping more patients have better access to healthcare. To date, the program has supported two winners from 2022 to scale their programs, and there is work ongoing currently with the three 2023 winners.

Could you share the impact of the collaboration with ICanServe Foundation in the Philippines, specifically in breast health monitoring and its effect on cancer care timelines?

The ICANSERVE Foundation in the Philippines was one of the APPIS Innovator Program’s inaugural winners in 2022. As a result of that win, we had the opportunity to support The Circle of Life Initiative, a project that aimed to build the data and digital infrastructure of the Ating Dibdibin (Take Your Breast Care to Heart) breast cancer control program, to further improve breast cancer care in the Philippines.

The foundation conducted in-depth interviews with patients, patient navigators and healthcare providers in community health centres to ensure the digital platform would overcome common pain points and be accessible and user-friendly for patient navigators. After using collated feedback to develop the digital platform and streamline the process, in a period of six months, 23,000 women received breast cancer screenings, slashing the average time from diagnosis-to-treatment from 9 months to just 45 days.

The initiative also helped to train more than 90 healthcare workers and it continues to build on that initial success, with more impact expected across the country. Since the program provided a digital infrastructure for data driven decision making, as well as a playbook for other local government units to plan and implement similar breast cancer control programs, the hope is that many more women in the Philippines will benefit.  

It's empowering to see this initiative grow from a program in one city to a comprehensive breast cancer control program in partnership with health tech company Dashlabs.ai, the government leaders of the City of Taguig, Novartis, and various healthcare providers and patient advocates. 

The Circle of Life initiative is just one example that demonstrates the ability that digital and data infrastructure has to simplify complex public health challenges and their potential to save lives. We hope that this program can inspire other initiatives other countries to lower barriers of access to all.