The Double-Edged Sword Of The Digital Health Transformation

Digital Health
Young people rely more on social media to get information on health.

New report highlights the impact of social media on the health of young people in middle- and low-income countries. 

The digital transformation of health offers both significant empowerment potential and significant risks for young people, according to a new study published Tuesday by the Global Health Centre of the Graduate Institute of International and Development Studies.

The report, “Digital health and human rights of young adults in Ghana, Kenya and Vietnam,” highlights young people’s increasing dependence on social networks such as Facebook, Instagram, YouTube and TikTok to access health information, and demonstrates the challenges and opportunities that arise in the realm of human right as a result. 

“We hear all this excitement around digital health and we don’t know how much is hype and how much is true,” explained Prof. Sara “Meg” Davis, a senior researcher for the Digital Health and Rights Project, who led the study. “There are also concerns for people who are marginalized or vulnerable” on the digital platforms.

Davis told Health Policy Watch that the digital ethnography her team conducted was “revealing” because it confirmed just how much young people were using social media to get their health answers. It also raised concerns that the World Health Organization’s definition of digital health does not even mention social networks.

Digital health generally centers on telemedicine and the use of technology to receive care, or on tailored digital health applications, Davis said. But it leaves out mainstream social media as a source of care. Her study showed that Google searches and social networks are the primary source of health information for many young people. 

Davis and her international team have been working on the report for two years. It will be formally released during a public webinar on November 22 titled “Digital justice: How social media is transforming young people’s health and rights.” The webinar will take place from 14:00-15:30 CEST. Registration is available online.

Transnational participatory action research

The report is based on qualitative research with 174 young people and 33 experts in Ghana, Kenya and Vietnam. It specifically centers on their use of mobile phones to access information on HIV, sexual and reproductive health and COVID-19. Carried out using a transnational participatory action research (PAR) approach, teams in all three countries explored the tensions between the benefits and risks to young people’s rights to health and human rights, identified themes and patterns in the data, and helped identify areas for policy action. 

The research team included academic social scientists, staff at national community-led networks, human rights groups and civil society organizations. 

“The study represents the first transnational participatory action research project in global digital health,” Davis said. “Participatory action research empowers the community to have a voice in the design, data-gathering and analysis of the findings for action. Our study is a unique collaboration between global and national networks of social scientists and affected communities. We are excited to share both the findings and the approach, which we believe is key to creating new forms of evidence and public participation in the digital age.” 

The November 22 event will include a panel discussion, including some of the staff who took part in the study. Participants will be Stephen Agbenyo, Executive Director, Savana Signatures; Terry Gachie, Country Coordinator, Love Matters Kenya; Professor Catalina Gonzalez-Uribe, Universidad de los Andes; Tabitha Ha, Advocacy Manager, STOPAIDS; and Tigest Tamrat, Technical Officer, Sexual and Reproductive Health and Rights, WHO.

Health champions

The study documents a growing group of social media influencers and other health champions who offer health information and advice from medically sound sources in a language and level of acceptability that is comfortable for today’s young people. There are also chat rooms and social media groups that have successfully managed to recruit young people to join them and that have become safe online spaces for discussion on sensitive topics. 

Young people emphasized the importance of these “online families” for access to medicines, financial aid and psychosocial support, especially during COVID-19 lockdowns.

“[Our social media group] is more or less like a family, because at least we can help someone if that person is in need,” an HIV peer outreach counselor in Ghana said. “If that person is maybe sick and needs some small help, maybe that person is in an abused case, we just come in. …The great benefit that we are getting out of it is the education that we are giving out, and the services they are receiving.” 

Davis said that young people expressed enthusiasm for accessing health information through online channels because they believed their anonymity was protected online and they could therefore avoid some of the stigmas they might otherwise experience in clinics. 

At the same time, young people in all three countries shared serious harms linked to their use of digital health services, including verbal abuse and threats. This was especially true of young women, LGBTQ+ people and sex workers. 

“One of my friends posted on Facebook that she feels cold, headache and what could be the problem? Just asking in Kisumu Moms. The things that she was told: ‘You are pregnant, you have sugar daddies,’ and what and what. People started throwing words until she withdrew that post,” explained a 25-year-old woman from Kenya.

One of the things the researchers also found was a group of “really innovative people on social media” who are serving as champions of sexual and reproductive health, David said – people with significant followings in the tens of thousands or even millions in all three countries. 

“Young people have used their online access to information and social media networks to form extraordinarily powerful communities, investing little more than their own airtime and energy, and have literally saved lives by sharing medicines and information during COVID-19 lockdowns,” it says in the study. “As one young social media health champion suggested in Nairobi, they could do so much more by working together in partnership with health agencies.”

The work of some of these groups and individual influencers will be showcased during the webinar on the 22nd. Among them will be two of the organizations that participated, Love Matters Kenya with its 1.5 million Facebook followers, and Savana Signatures, which is running a hotline in 10 languages on reproductive health in Ghana. 

Misinformation 

Gachie of Love Matters Kenya said that her group has found that among the biggest challenges in censorship. Facebook, she said, often inadvertently censors content on the topic of sex, even when it is educational. The group has had many posts pulled down, marked as “escort services,” for example. 

In addition, she said the government has sometimes intervened in the sharing of content, as have more conservative group members, who will report some posts. 

Another challenge is misinformation, said Pham Huyen Trang, program manager of the Vietnam Network of People living with HIV and a researcher on the study.

“There is information online that is not true, is fraud, and sometimes young people access it before they realise and then they are scared,” Trang said. She noted that sometimes even untested medicines and other treatments can be offered that put people at risk. 

“Not everyone comes to learn,” said Gachie. “Some people come to sell products that are not even approved on the market. There is always a balance between being open and keeping people out who can do harm.”

Gachie added that there is a challenge, too, of having minimal staffing because of the lack of understanding about how important it is to have experts working with these online groups. 

Finally, the youth need to have a better grasp of their online rights and the ability to protect their data.

“Our review also found that the use of social media, social chat and web searches for health information and peer support is generally not addressed in global health strategies and policies,” the report said. “While all three countries have data protection laws and policies, key informants in each country described implementation and enforcement as weak. 

“Young people in the study generally had little knowledge of these laws or their rights,” the study continued. “Many expressed enthusiasm, nonetheless, to learn more about digital technologies and governance, and to play an active role in the digital transformation. They called for more resources and training and a voice in policy.”

The findings also demonstrated the need for governments and WHO to work together to roll out more robust regulations of social media and web platforms in the area of health. 

Trang said the interviews highlighted the need for training and noted that those interviewed said they wanted to learn to be able to take a more active role in their health. 

“Future digital health strategies should engage young people in creative thinking about ways to bridge the intersectional digital divides, empower young people with knowledge and information, and consult them in the design and governance of digital technologies,” according to the study.

A second phase of the study has been launched in Bangladesh and Colombia.

Image Credits: Photo by S O C I A L . C U T on Unsplash.

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