The International Alliance of Patients’ Organizations (IAPO), the Philippine Alliance of Patient Organisations (PAPO), and SingHealth Duke-NUS Academic Medical Center successfully convened the 3rd Asia-Pacific Patients Congress (APPC 2021) on 16 - 17 November 2021 where over 3000 patient advocates attended.

The APPC 2021 was a follow up of the 2nd Asia-Pacific Patients Congress held in December 2020, before the second and third waves of the COVID-19 hit the region, and as anticipated, the pandemic was not yet over, and the first wave had exposed massive fault lines in our health systems that needed to be strengthened. 

The early gains made by the region in controlling COVID-19 through face covering, isolation, test/track and the roll-out of vaccination programs were soon undermined by the other variants of COVID-19. We once again witnessed health systems stretched resulting in healthcare delivery that lacked compassion which unfortunately led to a mass loss of trust in health systems. 

It was in this framework that the APPC 2021 was convened. With the theme “Recovering together through compassion, insight and co-creation” the congress brought together the region’s expert patients with a variety of high-level healthcare stakeholders to share their vision and experience on the recovery of health systems and how we can all collaborate in building back better.

Discussions held at the APPC 2021 all highlighted that patient, family, and community engagement in healthcare decision-making is critical in improving the effectiveness, efficiency, quality, safety and equity of health systems and health technologies development.

Compassion

Speaking at the keynote session, Professor Tan Kok Hian, Group Director & Senior Associate Dean of the SingHealth Duke-NUS IPSQ, noted that COVID-19 has greatly altered the patient experience. Quoting Hippocrates, a compassionate figure in medicine, he believes that holistic patient care is to “cure sometimes, to treat often, and to comfort always” and, as we go through COVID-19, we need compassion and empathy to relieve the suffering of patients and health workers alike through empathy-based programs in healthcare.

Fatima Lorenzo, President of the Philippine Alliance of Patient Organisations, noted that amidst the widened inequity brought about by the pandemic, collective recovery will require deeper compassion that inspires learning and develops new behaviours, bringing about insights and collaborative solutions to the COVID-19 crisis.

Co-creation

Professor Lee Chien Earn, Deputy Group of the Singapore Health Services, highlighted that in working with patient communities, co-creation begins with understanding their needs, aspirations, and what matters to them. Services should then provide holistic care with clear goals and an integrated team working collaboratively with the patient as an active co-producer.

He noted that we could all learn from the person-centered philosophy of care of the ESTHER Network that asks what matters to patients, health workers, and caregivers, co-produces tangible goals, customizes and upscales projects, and establishes frameworks to develop partnerships.

To strengthen the capacity of patients and families to engage in health services, systems, policies, and research to ensure patient safety that results in quality and universal health care, Nittita Prasopa-Plaizier, Education & Capacity Development, Maternal Child Health & Quality Safety at the WHO Western Pacific Region, proposed that attendees adopt the CARE in healthcare framework which guides the role of patients’ organizations in facilitating compassion, access, respect, and empowerment.

Insight

Laurie Myers, Director for Global Health Literacy & Oncology for Health Equity at MSD, highlighted that a world where patients are fully empowered should be what we all strive for. In this pursuit, health literacy should be front and center as the strongest predictor of health than any other demographic variables.  Improving health literacy begins by communicating in ways that resonate with the patients and learning from listening to patients and caregivers.

The congress concluded with a pledge for patient-centred healthcare where the patient is not only the user, but a contributor and a co-creator to its development and called upon all World Health Organization’s South East Asia and Western Pacific region Member States, patients, families, industry, and other stakeholder partners to undertake the following short-term measures, mid-term measures and long-term measures:

Short-term measures 

• To bring back focus on Universal Health Coverage (UHC) 2030.
• Invest more in digital health literacy and adopt the syndemic approach to addressing the COVID-19 pandemic and the interaction and amplification of biological and social determinants that are important for COVID19 prognosis, treatment, and health policy. 
• To accelerate the COVID-19 vaccination programmes and make them accessible to cover all their populations. We must address vaccine equity. No one is safe until everyone is safe in the region.
• To invest in the research and development of new effective treatments to reduce the heavy mortality and morbidity amongst COVID-19 patients in the region. 
• To invest in finding treatments for new and emerging diseases and the interplay between environment and health.
• To support WHO Solidarity Trials.

Mid-term measures 

• To invest in and revisit the WHO compassionate integrated and people-centred Universal Health Coverage framework. 
• To invest in integrated health systems because patient journeys in a fragmented healthcare systems are unsafe, ineffective, and cost more when compared to integrated health systems.
• To invest in and drive the research and development in digital healthcare in the region.
• To leap forward and invest in genomic medicine and drive research and development and uptake of personalised healthcare and precision medicine in the region. 
• To personalise the full spectrum of health services, from health promotion to prevention, treatment, rehabilitation, and palliative care.

Long-term measures 

• Use effective institution, legislative, policy, practice, and standards framework to create an enabling ecosystem for patient engagement and co-creation at all levels of decision-making in our health systems.
• Use effective institution, legislative, policy, practice, and standards framework to institutionalise patient engagement in regulatory and health technology assessment bodies in the region. 
• Undertake more research and development to provide patient preference studies and real-world evidence to regulatory and health technology assessment bodies in the region.
• Move to a better mix of self-care and health professional supported healthcare with a focus on chronic non-communicable diseases, ageing and rare diseases.
• Amplify digital healthcare and the ensure equity and equality by building robust infrastructure.
• Make primary healthcare the bedrock of Universal Health Coverage 2030.
• Invest in the Global Patient Safety Action Plan 2021-2030 and ensure all Member States have robust patient and family engagement institutionalised to eliminate all avoidable patient harm.