Raising a conversation about patients rights and patient care over the din of the COVID-19 pandemic is not easy. But hundreds of patient groups and thousands of attendees drew together virtually last week at the 2nd Asia-Pacific Patients Congress to talk about how to reclaim a voice and space for patient rights in the wake of the COVID-19 pandemic – where patients have been more disempowered than ever before. 

COVID-19 has greatly altered the patient experience, shifting people more than ever from an active to a passive role in their health care, especially in the initial stages of the pandemic, said Dr Sanjiv Kumar, Chair of the India Alliance of Patient Groups.

“[Patients] were picked up from homes and placed in hospitals. They were not allowed initially to even make phone calls to their friends and relatives; no visitors were allowed. It was more like putting somebody in a jail,” he said.

Speaking at the keynote event, ‘Patients’ co-creation in future proofing health systems: preparedness for the next phase of the pandemic’, Sanjiv reflected on how COVID-19 has been “treated not as a health problem, but as a law and order situation” in India and many other countries.

The stigma has been reinforced by measures created by the government and police authorities, where the implementation of restricted areas and red zones prevented people and patients from entering and leaving areas.  

According to Dr Sanjiv, healthcare must shift to a people-centered approach that allows patient participation and respects their needs and preferences – if goals for equity, quality and universal access are ever to be achieved..

“The patient community underscored the reality that for sustainable universal health coverage, there needs to be active patient engagement at all levels of the health system decision-making process,” said Karen Alparce-Villanueva, Secretary of the International Alliance of Patients’ Organisations (IAPO), speaking at the event. 

Patients As Experts in Healthcare 

The Congress – which ran  3 – 4 December and drew in 298 patient groups and 3046 attendees from 66 countries – included presentations on topics such as digital literacy, patient registries, clinical trials and increased participation, patient safety, reducing harm, patients led research, patient co-authorship, regulatory reliance and harmonisation, and building back better healthcare systems post COVID-19.

“COVID-19, took a lot of the attention and resources globally, but we wanted to leave no one behind,” said Dr Neda Milevska Kostova, Vice-Chair at IAPO, who spoke on initiatives created by IAPO, such as the Congress, that have been organized to “make patient voices heard.” The Congress is one of several regional conferences organized by IAPO that occur annually in order to fulfill the vision of seeing patients and patient groups at the center of healthcare. 

Speakers flagged that patients’ right to choice and their role as experts in healthcare should be acknowledged and given appropriate space and environment to contribute meaningfully. 

Said Dr Ratna Devi, Chair at IAPO. “This is a huge opportunity for patient groups to come together to lend their voices.” 

She stressed that healthcare is “not one size fit all,” since providers are working with diverse patients from diverse backgrounds. “Healthcare needs to be customized, messaging needs to be customized, and how you ask people to change their behaviors needs to be customized.”

At the same time, to become more empowered, patients need to be more aware of the need to act pre-emptively when accessing health care, she said, adding: “If patient groups integrate themselves and understand that early diagnosis, and early seeking of treatment, could be a better option, things could change for them.”

Health Authorities Need to Build Patient Trust & Engagement  – COVID Vaccine Rollouts Will be a Litmus Test 

Health authorities need to implement strategies that engage and empower people and communities. Patient leaders must become active participants in the implementation of health policies that ensure they are at the center of equitable health access. 

“Every one of us is a potential patient, and everyone one of us has the motivation to be involved in combating the pandemic,” said Dr Martin Taylor, Director of Health Systems and Services in the WHO’s Western Pacific Regional Office. He addressed the role played by patients, their families, and communities in shaping the collective and societal response to COVID-19. 

Community engagement has become a key strategy in a successful COVID response, Taylor noted.  “Trust is central to this in the Asia Pacific region,” he added. An effective response to COVID-19, said Dr Martin, requires that governance, health systems, populations, communities, patients, all work together. Community health leaders who have succeeded in curbing transmission trends and assuring quality care have done so by building trust and engagement in solutions that worked for health workers, patients and their families, as well as the broader populoation.  

Looking ahead, the development and rollout of COVID-19 vaccines will be the next great opportunity for new models of patient engagement. A successful rollout is dependent on extremely effective engagement with groups, making sure that instead of misinformation, there is trust, and that vaccine supplies and delivery are carefully managed.  

Added Taylor: “Our vision [for the future] will only be possible if patient and patient groups, and communities, engage, and are engaged, both in shaping and advocating for a vision in which health is at the core of society’s values.” 

Image Credits: Flickr: Rumi Consultancy/World Bank, APPC, APPC.