The COVID-19 pandemic, while devastating, has also created an opportunity for “patients to stand up, educate themselves well and build their expertise,” says Karen Alparce-Villanueva, a board member of the Philippine Alliance of Patient Organizations (PAPO).

She was speaking at a session of the Geneva Health Forum that focused on “Patients as Co-creators and disseminators of innovation.”

She added: “Patients need to realize that we are not merely passive recipients of care but we need to be co-creators and disseminators of information. The more that we know that we are able to participate in policy making.”

But to be achieved during the pandemic, patients must be involved at every stage of a health intervention, from design to evaluation, research to implementation, and from health policy to service delivery, said the speakers panel, which included representatives from three other organizations involved with patient and provider engagement.

The speakers noted that modern patient advocates need motivation, knowledge, skills, attitudes, and the ability to engage in all steps in order to be effective co-designers, co-producers, and co-deliverers of patient centric health systems.

Creating a Patient-Centric Approach – COVID and Beyond

Alparce-Villaneuva and others discussed how the solution to dealing with today’s public health challenges and changing landscape was not to change strategic direction, but to increase patient engagement through a “patient-centric” approach to health.

Neda Milevska Kostova, Board Vice Chair at the International Alliance of Patients’ Organizations (IAPO), said that patients should rather be referred to as “partners”, in order to broaden the scope and the experiences of others.

“It is not only about the health system, because we know that health comes from 20% of the system, and the remaining 80% is related to the way we live,” she said. “Therefore, it’s the patients alone who can bring this extra component that the health system alone cannot encompass.”

A continuous engagement of patients in policy-making would allow true patient participation, added Angela Grezet, of the Association Savoir Patient, who cited best engagement experience in her home country of Venezuela, where she describes her personal experience with doctors “who went the extra mile” to not only diagnose but also explain to her the background of any condition that she might present. 

“I really noticed that [doctors] really tried to understand my situation, and then spent extra time to really explain to me from A to Z, the treatment that they were going to be providing,” said Grezet, who has lived and worked in Europe as well as Latin America.  “We can’t really continue to treat very big health issues without the whole population [being involved].” 

Stigma Over Patient Involvement Persists In Many Health Systems

Despite the apparent benefits, a lot of stigma still exists around patient involvement. This is often an issue in low and middle-income countries where communication is ‘one-way’ between the practitioner and the patient – and it may be less culturally acceptable for patients to challenge the traditional authority of health practitioners, said Bisi Bright, CEO and Founder of the LiveWell Initiative (LWI).

“Empowering [patients] allows them feel safe and not ashamed to be a patient,” noted Bisi Bright, CEO and Founder of the LiveWell Initiative (LWI), describing examples of empowering and training women through crises such as HIV and AIDS. This gives them the confidence to come out and talk about their conditions as expert patients. 

Beyond the current pandemic, fostering a health systems culture of expert patients who are actively involved in their healthcare and health management paves the way towards achievement of universal health coverage, the panelists said.   

Concluded Kostova, “It’s not only about patients but also patient carers, patient advocates… , and this pandemic has shown that it is not only patients but it is everyone, everywhere who can help in improving our lives.”

The Geneva Health Forum runs from 16-18 November. Follow Health Policy Watch’s coverage here and on Twitter.

Image Credits: Geneva Health Forum , Flickr – US Navy.