What role should WHO play in regulating digital health access and information?

Should the World Health Organization (WHO) intervene in social networks and other organic platforms that provide health information? And if so, how?

These were pressing questions raised Tuesday during a webinar presented by the Global Health Center at the Graduate Institute Geneva in coordination with the Digital Health and Rights Project.

The researchers and project participants presented their findings from a transnational participatory action research into young adults’ experiences with digital health in Bangladesh, Colombia, Ghana, Kenya, and Vietnam, raising important questions about the role the organized health community can play in regulating organic digital health content.

They also proposed policy recommendations and good practices to help address structural inequalities and respond to the needs of young people in their diversity based on the results of their work.

Tabitha Ha, Advocacy Manager at STOPAIDS, called on the WHO to update its definition of digital health to include Google and social networks as digital health platforms, which could then allow the organization to assess the health content of these platforms and support local health agencies, ditto.

But Ha cautioned that while there is a need for collective approaches to managing health data on the World Wide Web: “If an institution like the WHO emerges, how will that change the dynamic? This could potentially affect how people use social media to create this type [health] content.”

Maintaining basic standards

Ha and his colleague Stephen Agbenio, CEO of Savana Signatures, recommended that the WHO work remotely, perhaps providing oversight support and ensuring that certain basic standards are maintained, while not directly interfering with content creators on the ground.

WHO could, for example, communicate with large technology companies about the need for appropriate sexual health information to reach youth, including clearer information that may at first appear to violate community standards on some social platforms.

Terri Gachi, national coordinator of Love Matters Kenya, said her team faces constant censorship from social networks – especially Facebook – for posting content that may appear to be a violation of community standards, when in fact it is the sharpest information. that her constituents need to learn about sexual and reproductive health.

“We want to speak their language. But what happens in most cases is that our information is flagged, maybe labeled as escort services or inappropriate, and then taken down,” Gachi explained. She called on the WHO to bring social media into the conversation to help find a solution.

“We need to ensure that there are consistent conversations with the big tech companies in terms of what young people want to see,” Gachi said.

Finally, the question of regulation was raised, not so much as a means of controlling the flow of information on social networks, but to ensure that people who access information on these networks can feel safe.

“How do we facilitate the connection between the dissemination of accurate information to people who may be at risk, who may be marginalized, and who want to get on this platform to access this content?” Nomtika Mjwana, project manager for the Global a network of people living with HIV asked.

Nomtika Mjwana

She recommended using the direct involvement of young people and the communities that use these platforms to come up with data protection mechanisms so that people can trust the platforms they are on.

This could mean finding ways to stop data breaches before they happen, to ensure that when a young person enters a chat room, he or she will not meet a scammer, nor do they have to fear, that the digital voice on the other end will engage in discriminatory or abusive behavior.

These provisions could also include rules about the use of data so that if an individual is asked to provide information about his or her sexual orientation or identity, they have an understanding of who that information is going to and how it will be used.

“I’m really critical of how we collect certain types of data and how that data will continue to empower the people we’re getting the data from, but we’re also just doing a comprehensive scan and understanding from the people we’ve defined as future users of the platform or people , who will have access to the information, what are some of their fears and how can we very actively and proactively ensure that some of them are at least incubated in the initial stages,” said Mjwana.

Digital transformation

The Digital Health and Rights Project, overseen by Sarah Davis of the Graduate Institute, arose out of the transformation of global health systems through technology.

“The global context for our study is really this very rapid rise of digital transformation and digital health, which of course has been accelerated by the COVID pandemic,” Davis said in his opening remarks on Tuesday. “Global health and national health agencies are really picking up on this trend. In 2021, the World Health Organization launched a global digital health strategy, which called on countries to strengthen health systems with digital technology and data.”

She highlighted how global agencies are forming partnerships with big tech companies, while at the same time there are many concerns raised by UN human rights experts and scholars about threats to privacy, non-discrimination and the threat of potential privatization of public services.

Digital health and rights

“Furthermore, because we work closely with people living with and vulnerable to HIV, we have more than three decades of evidence showing the impact of stigma, discrimination, criminalization and gender inequality on health responses, as well as the impact of these things about data, access to technology and access to power in different forums,” Davis added. “We really wondered … how these inequalities would play out in digital transformation.”

The project’s research has been conducted in five countries and has so far involved 174 young adults between the ages of 18 and 30, in addition to 83 key informant interviews. The report, released Tuesday, focuses on efforts in Ghana, Kenya and Vietnam and teases results coming from Bangladesh and Colombia, where the team just finished fieldwork.

Access Authorization

“One of our first key findings was specifically based on the fact that young people really value access to digital health technology,” explained Mivana. “They described it as empowering.”

Google emerged in a number of focus group discussions and some key informant interviews, along with social media and WhatsApp, as one of the most important ways people find information, community and safe spaces to engage and respond to some of the concerns they had but didn’t want to address by going to health facilities where they might feel judged.

“The online space has actually given some people a platform to not necessarily feel like they have to go out,” Miwana said.

The second finding centers around the fact that many inequalities seen offline continue to play a role online, such as gender, socio-economic status, education, language, disability, sexual orientation or even location. This can mean that people do not have the means to buy the technology they need, or are subject to censorship, violence or harm online.

“We’ve come to realize how the digital divide is actually cross-sectoral,” Mjwana said.

Issues related to monitoring and regulation also came up as concerns in the survey.

When people were asked where they thought their data was going, many didn’t know and thought it was a problem they had to deal with themselves. Some young people assumed that their data was going to a third party, while others imagined that the data was going to the platform itself or even to the police.

Digital health literacy and empowerment were also highlighted, as was involvement in policy making and calling on health officials to bring young people into conversations as social media champions.

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