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

Should the World Health Organization (WHO) intervene on social networks and other biological platforms that are providing health information? And, if so how?

These were the important 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.

Project researchers and participants presented their findings from a Transnational Participatory Action Research Study Young adults’ experiences with digital health in Bangladesh, Colombia, Ghana, Kenya, and Vietnam, raising important questions about the role of the organized health community in regulating organic digital health content.

She also offered policy recommendations and good practice to challenge structural inequalities and help young people meet their needs in diversity based on the outcomes of their work.

STOPAIDS Advocacy Manager, Tabitha Ha called on the WHO to update its definition of digital health to include Google and social networks as digital health platforms, which would then allow the organization to evaluate health content on these platforms and Enable local health agencies to provide support. Same.

But Ha cautioned that where managing health data on the world wide web requires a collective approach: “If an institution like WHO comes in, how will it change the dynamics? This could potentially affect how people use social media to build this type of [health] Subject.”

maintaining basic standards

Ha and colleague, Stephen Egbenyo, executive director of Savannah Signature, recommended that WHO work remotely, perhaps providing supervisory support and ensuring that some basic standards are maintained, while working with content makers on the ground Do not interfere directly.

For example, WHO could communicate with big tech companies about the need for relevant sexual health information to reach youth, including more explicit information that at first glance appears to violate community standards on some social platforms Might be possible.

Terri Gachi, Love Matters Kenya’s country coordinator, said her team faces constant censorship by social networks – particularly Facebook – for posting content that may appear to violate community standards, in fact In the U.S., this is the sharpest information its 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 gets flagged, perhaps labeled as escort services or inappropriate, and then taken down,” Gachi explained. He asked the WHO to help find a solution. called for bringing social networks into the conversation.

“We need to make sure there is a constant dialogue with the big tech companies about what young people want to see,” Gachi said.

Finally, the issue of regulation was raised, less as a means of controlling the flow of information on social networks than as ensuring that people accessing information on these networks felt safe.

“How do we facilitate the relationship between disseminating accurate information to people who may be at risk, who may be marginalized, and who want to jump across this platform to access that content?” asked Nomtika Majwana, project manager for the Global Network of People Living with HIV.

Nomatica Majwana

He recommended leveraging direct involvement of young people and the communities that use these platforms with data protection mechanisms so that people can trust the platforms they are on.

This could mean finding ways to prevent data security breaches before they happen, to ensure that when a young person enters a chat room they will not meet an impostor and have nothing to fear. Require that the digital voice on the other end engage in discriminatory or abusive behavior.

These regulations may also include rules on the use of data, so that if a person is being asked to provide information about their sexual orientation or identity, it is understood to whom that information is going and How will it be used?

“It’s really critiquing how we’re collecting certain types of data and how that data is going to empower the people that we’re getting the data from, but it’s also scanning through, and understanding from those people that we have defined. What are some of the fears of those who will be accessing the information, as potential users of the platform or people, and how can we proactively and proactively make sure that they Some have been incubated at least in the early stages,” Majwana said.

digital transformation

Digital Health and Rights Project, Under the supervision of Sarah Davis of the Graduate Institute, came about as a result of the transformation of the world’s health systems by technology.

“The global context for our study is really the very rapid growth in digital transformation and digital health, which certainly was accelerated by the COVID pandemic,” Davis said in his opening remarks on Tuesday. “Global health and national health agencies are really embracing the trend. In 2021, the World Health Organization launched a global strategy for digital health, calling on countries to strengthen health systems with digital technologies and data.

He highlights how global agencies are partnering with big tech companies, as well as the dangers of privacy, non-discrimination and potential privatization by UN human rights experts and scholars Many concerns have been raised. public services.

Digital Health and Rights

“Furthermore, because we work closely with people living with HIV and those vulnerable to HIV, we have over three decades of evidence showing the impact of stigma, discrimination, criminalization and gender inequality on health responses There are, and the impact of these things also on data, access to technologies and access to power in different forums,” Davis said. “We were really surprised … how these disparities will play a role in digital transformation.”

Project research was conducted in five countries and so far has included 174 young adults between the ages of 18 and 30, in addition to 83 key informant interviews. The report released Tuesday focused on efforts in Ghana, Kenya and Vietnam and mocked the results coming in from Bangladesh and Colombia, where teams have just completed fieldwork.

empowering access

“One of our first major findings in particular is based on the fact that young people really appreciate access to digital health technologies,” Majwana explained. “He described it as empowering.”

Google came up with social media and WhatsApp, as well as several focus group discussions and interviews with some key informants, as one of the most important ways in which people find information, a community and a safe place to vent some concerns . that they were but did not want to address it by going to health facilities where they could feel judged.

“The online space has really provided a platform to some people who don’t necessarily have to put themselves out there,” Majwana said.

A second finding focuses on the fact that many of the disparities seen offline play a role in online location, such as gender, socioeconomic status, education, language, disability, sexual orientation or even location. This may mean that individuals may not have the funds to purchase the necessary technologies, or may experience censorship, violence or harm in the online sphere.

“We’ve learned how intersectional the digital divide really is,” Majwana said.

Issues of monitoring and regulation also emerged as concerns in the study.

When people were asked where they thought their data was going, many had no idea and felt it was a concern they had to deal with themselves. Some youth assumed their data was going to a third party, while others imagined the data was going to the platform itself or even the police.

Emphasis was also placed on digital health literacy and empowerment, as well as a voice in policy making and health officials were asked to bring youth into the conversation as champions on social media.

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