Since the virtual launch of the #MyDataOurHealth campaign on 23 January, our 28 community-based partner organisations in East and West Africa have made remarkable progress, raising awareness of the issue of health data governance among the public, the media and politicians. As a result of this engagement more people are aware of the issue and starting to value their health data, more organisations are calling for government action on this issue, there is more media coverage, and more engagements with governments across East and West Africa. This is leading to progress in getting governments to endorse the Health Data Governance Principles, and supporting a global framework on health data governance at the World Health Assembly, that can then be used as a basis for national legislation.  

Partners began their outreach by engaging their own supporters and networks, raising their awareness through social media and in workshops, and inviting them to participate in the Where’sMyData? campaign action. One hundred and five people registered for the campaign Action in the first two weeks. The impact is being felt on our partners: 

“The My Data Our Health campaign has brought new ideas in our community that build the confidence of Women living with HIV and adolescent girls and young women (AGYW) to demand their data. Previous no one, including myself was aware of the importance of accessing personal health data. It is raising the debate even to media personnel as they didn’t understand at first why it is important but now they can link this to health improvement in the country”, said Joan Chamungu, Executive Director, Tanzania Network of Women living with HIV and AIDS (TNW+).

‘Empowering young people and their communities to control their health data is pivotal in shaping a future where they are active in their healthcare and can access digital services and information to enable them to enjoy their rights. At the heart of the digital transformation of health is the question of data. If we, as young people, don’t even have control over our own health data, then we will play no part in this digital transformation, and many of us will be ignored and left behind when governments make their decisions around health priorities. This is why the My Data Our Health campaign is important to us,” said Edmond Magara, Head of Programs for Youth Alive! Kenya.

A short film on the experiences of those who took part in the ‘Where’s My Data?’ action and tried to find their health data was produced. This film has been used online and during different events. In addition we asked people to fill in a survey on their perceptions and understanding of health data. To date over 2000 people have done so. Results of the survey are being used as a benchmark for the campaign.

Partners have also been promoting two Instagram and TikTok filters we developed aimed at raising awareness of the issue in a fun and interactive way. So far the filters have been viewed by over 13 thousand people.  We’ve developed a user guide here on how to use the filters.  

EANNASO and Girls First Initiative collaborated on a Twitter Space event to consider the issue of health data governance across the East Africa region and to explore the role of civil society organisations in advocating for a global health data governance framework. These online discussions add to the broader set of conversations taking place on this issue and raises its profile. 

In May our partner, VIA -ME organised a Youth-Summit to raise awareness of the issue of health data governance among youth-led organisations in the run up to the World Health Assembly. The 41 young people who attended developed a manifesto on health data governance that called on the government to take action. The event was covered on national television. At the summit  37 organisations endorse the Health Data Governance Principles. Participating organisations also promoted the event and the manifesto among their supporters and networks. 

An important aspect of the campaign is to broaden understanding and support for the issue. To achieve this, partners have been reaching out to civil society organisations working on the issue of health and UHC to ensure they integrate calls for more effective health data governance into their priorities. In June  our partners FENOS-CI, OSEFF and AFPROEX in Côte d’Ivoire conducted a successful civil society workshop in which  the National Federation of Health Organisations endorsed the campaign. This event was also covered in the national media. 

To raise public awareness our partners have been working with journalists across the two regions. Partners in Uganda and Tanzania organised workshops with journalists in April to raise their awareness of the issue and its importance. Engendering Gender Uganda has also hosted a workshop with journalists in Uganda who have begun to publish media stories; 2 stories have been published so far. In Côte d’Ivoir, FENOS-CI held a media training with journalists on the issue of health data governance that was covered on national television. Coalition partners were provided with a Communications Toolkit in English and French to encourage them to create their own content and assets. Partners in Tanzania used these assets in their press statement in celebration of World Health Day calling for a global health data governance framework. Other partners have been using these materials in their own communications products and on their own websites.

All these engagements serve to raise the profile of the issue of health data governance among the public and politicians and build political support for the campaign. The collective engagement under the banner of MyDataOurHealth also creates a sense of sale that one organisation alone would not be able to achieve, and is more likely to come to the attention of decision makers in government.  

Our partners have been engaging politicians directly to raise their awareness of the issue and to get the government to endorse the Health Data Governance Principles and support calls for the creation of a global framework at the World Health Assembly.    

In Benin, One World and other partners hosted the  ‘Data For Health’ symposium that was attended by almost 60 participants, including representatives from the Ministry of Health, the National Statistics Office, the Ministry of Digital Technology civil society, youth representatives, among many others. The symposium aimed to generate awareness and inspire action for stronger health data governance and a global regulatory framework to achieve greater health equity. The event was covered on national television and in the newspapers. One World followed up this event with a meeting with the Director of the Department of Data Management at the Ministry of Health who expressed her support for the objectives of the campaign. Partners in Côte d’Ivoire met representatives from the Department of Digital Health and Data from the Ministry of Health to discuss issues related to the campaign. This meeting was very positive and our colleagues are now aiming to have further meetings to explore the government’s endorsement of the Health Data Government Principles and support for a global framework. 

At the regional level in East Africa, Transform Health held an event on health data governance and promoted the campaign at the Africa Health Agenda International Conference (AHAIC 2023). The high-level event sought to address the critical need for a set of global standards on health data governance. The session highlighted the lived experiences of youth, women and other marginalised communities who participated in the Where’sMyData? action and invited panellists to consider actions governments need to take to address the issue of health data governance. 

In the coming  months partners plan to step up their engagement and convince governments in East and West Africa to take a lead in endorsing the Health Data Governance Principles and in calling for a set of common standards. Through their engagement they will be contributing to a reframing of the issue of health data and a renewed appreciation and understanding of its importance to us as individuals (it does contain our most intimate details after all!) and as societies. 

Background

Transform Health is calling for a global health data governance framework, underpinned by equity and human rights based principles, to be developed and adopted by governments (guided by the coalition’s Health Data Governance Advocacy strategy). To ensure this happens, we need governments to support and adopt a World Health Assembly resolution mandating the WHO to develop a global framework. It is important that such a framework is developed through an inclusive, multistakeholder process. A global framework (endorsed by governments through the World Health Assembly) would establish an agreement between nations around a set of common regulatory standards for the governance of health data. Once adopted, we ultimately want to see a global framework adapted at regional and national levels, to guide and inform the development/strengthening of national health data governance legislation/regulation and regional frameworks.

Earlier this year, Transform Health launched the #MyDataOurHealth, a global campaign led by community based organisations, to raise awareness and galvanise action on the issue of health data, and to encourage a public and political conversation around questions of health data collection and use. The campaign aims to build up public and political support for stronger health data governance and for the need for a set of global standards to inform national legislation.  

About Transform Health 

Transform Health is a global coalition of more than 130 organisations advocating for the equitable digital transformation of health systems, to achieve health for all.

This is an anonymous account of a Transgender Woman seeking healthcare in Mbale city. This represents the dire conditions that are sometimes faced by members of the LGBTQ+ community while exercising their fundamental right to accessing quality healthcare. 

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I am a transgender woman living in Masanda cell, Musoto in Mbale city in Uganda. I have been seeking health care services including on my sexual and reproductive health in a government health hospital because I cannot afford care in a private health facility. They charge a lot. 

On 29 May 2023,  I went to seek medication from the hospital and I regretted going there. I was treated badly.  It was the worst day of my life. When I entered the medication room, I found a nurse. She looked at me for some minutes. She then asked me …how can I help you… I told her about the pain I was having, discharge and the discomfort. Her face just changed. She started asking me ..why did you get the infection… why don’t you be normal like other people instead of trying so hard to be what you are not. I became confused. But because I was in pain, I did not have money to go to a private health facility, I tried to remain calm and humble so that she could help me. 

She then asked… are you aware of the confusion you people have brought? We are now being hated by the community members, members of parliament and family members because of your acts. She told me…. my job is my security… it supports me and my children and I cannot loose it because of you. Look for someone else to help you.  

I left heart broken, confused and in pain. I went out and sat on a bench outside. I kept looking at the health workers passing in their white jackets. I feared to open up to another medical worker there, so I just left. But I just wondered why did she treated me that way because I had received health care in that very hospital. 

I went to report my case to the NGO which supports transgender people in Mbale. I wanted them to ask that nurse why she humiliated me especially after listening to my private matters, which she was recording and later she did not even help me. The NGO told me the climate was not good. They advised me to seek medical support from a private clinic. They gave me names of two private clinics and a contact phone of one person. 

I am worried that the hospital staff have my health information now, they recorded and kept it and rather than help me with my pain they drove me away. I don’t even know what information was recorded and I am afraid to go and ask for my health record. I am also afraid this information could now be used against me, especially given the attitude of the nurse and the current climate in the country. I need medical care and I can’t afford a private clinic, but I am now afraid of going back to the public hospital. I am feeling desperate.   

~ Mathilde Forslund, Executive Director, Transform Health

Transform Health recently participated in the multi-stakeholder hearing on universal health coverage (UHC) organised at the UN headquarters from 8-9 May in New York. The hearing was part of UN’s high-level meetings on UHC, TB and pandemic prevention and preparedness in 2023 and was attended by representatives and advocates from a diverse range of non-state actors, including civil society, communities, youth groups, health and care workers, parliamentarians and local government networks, foundations, academia and the private sector. The hearing allowed a range of partners to make statements about their hopes and ambitions for the outcomes of the UN High-Level Meeting on UHC, which will be held on the sidelines of the United Nations General Assembly in September. The one and a half day hearing aimed to inform and shape the themes of the multi-stakeholder panels of the High-Level Meeting.

Transform Health was invited to share perspectives during the meeting – on behalf of more than 130+ coalition partners – calling for digital health and health data governance to be prioritised, as key components of achieving the Sustainable Development Goal on UHC. Innovative approaches are urgently needed to get back on track to achieve UHC by 2030. This includes unlocking the potential of digital technologies and data to strengthen health systems, and scale up access to primary health care services.

Digital health is already an important and growing part of most health systems and offers a huge opportunity to accelerate progress towards UHC. As we harness this opportunity, we must ensure that equity and human rights are central to the digital transformation of health systems, to ensure that we are closing, rather than widening, health equity gaps.

Promising outlook

During the hearing, we were encouraged by the statement of the Government of Indonesia, which highlighted that ‘digitalisation of the health sector is the key driver to achieve UHC’. We also heard from the private sector constituency, represented by Olseya Struck from Royal Philips, who emphasised the need for primary care to be co-designed and co-invested in to achieve UHC at scale. She called for stakeholders across different sectors to partner faster at scale, identifying investable solutions and to cover investment needs through blended finance. 

What is missing?

The multi-stakeholder hearing emphasised that UHC is not just about health, but critical also to drive broader socio-economic development and reduce inequities. However, there was a lack of sufficient emphasis on the transformative role that digital technology and innovation can play in achieving UHC. The recently launched Action Agenda on UHC by the UHC2030 Movement, mentions digital health and highlights the importance of adopting enabling laws and regulations that create an enabling environment for use of health technologies and innovations that will strengthen future economic and social resilience. 

Whilst this is important, we are missing a stronger focus on digital health transformation as an accelerator of UHC. Transform Health is calling on Member States and the UN to prioritise investments in digital health and health data governance to strengthen health systems and scale up access to primary healthcare. Specifically, we want to see action to:

1. Prioritise digital health transformation as an accelerator to UHC, rather than a siloed health issue. 
2. Close the divide in digital access, including coverage gaps, affordability and digital literacy. We need a digitally-enabled workforce that can keep up with innovation in health and deliver care that reaches even the most marginalised groups.
3. Increase, and better target and coordinate funding for digital health as part of wider investment to deliver UHC.
4. Establish a strong national regulatory and policy environment to ensure the digital transformation of the health system and use of data are inclusive, equitable, sustainable and promote human rights. 
5. Develop and endorse a global health data governance framework that governs how data is used, owned, managed and shared within- and across borders. Transform Health calls on governments to formally endorse the Health Data Governance Principles (already endorsed by more than 140 organisations and governments), which lay the foundation for a global framework. 
6. Strengthen mechanisms for meaningful multi-stakeholder engagement at all levels of planning, strategy, execution and monitoring, and particularly ensuring the inclusion of especially youth, women and marginalised communities . 

Prioritising digital health and health data governance in the High-level meeting Political Declaration

A Political Declaration will be endorsed by Member States at the High Level Meeting in September. We must ensure that the declaration addresses  the critical role that digital health and health data governance play in accelerating progress towards Universal Health Coverage 2030. A draft declaration is currently being negotiated by governments, with the zero draft recently shared for feedback. This is an important window of opportunity to ensure these issues are prioritised. 

We believe that digital health should not be viewed only as a health vertical, but rather very much as an accelerator to achieve health for all. Digital health and data-led solutions, governed under a global health data governance framework, have far-reaching impacts and can play a transformative role to enable more equitable health systems – towards achieving Universal Health Coverage. 

What is next?

In order to sustain political commitments and encourage greater investments in digitally-transformed health systems, it is critical that the final political declaration recognises the role of digital health transformation in driving UHC progress and sets out concrete actions for Member States and other stakeholders to take this forward. 

In the lead up to UNGA77, as the political declaration is getting finalised, it is important that partners and stakeholders strongly advocate for digital health transformation to be given a more salient position to help achieve UHC 2030.

Relevant resources

• Recording of the full multi-stakholder hearing. 

Ahead of the 2nd meeting of the G20 Health Working Group, Transform Health was invited to organise a multi-stakeholder consultation on a new global initiative to accelerate the digital transformation of health systems, proposed by India’s G20 Presidency. The consultation brought together more than 80 participants to provide inputs on various aspects of the initiative.

Stakeholders welcomed the initiative and its potential to help close existing funding gaps and accelerate the equitable digital transformation of health systems, particularly in low and middle-income countries (LMICs), while also sharing recommendations to guide its development and implementation.

Digital health prioritised by Indian G20 Presidency

‘Digital health innovations and solutions to aid universal health coverage and improve healthcare service delivery’ has been identified as a priority for India’s Presidency of the G20 this year. Under this priority area, the Indian government is championing the establishment of a Global Initiative on Digital Health (GIDH). The proposed initiative seeks to harmonise the current fragmented global digital health landscape and address barriers to scaling and sustaining the digital transformation of health in all parts of the world.

Transform Health coalition partners and other stakeholders were invited to share their feedback on the GIDH during a virtual consultation on 24th March and through an online survey. Stakeholders were asked to share their feedback on six aspects of the GIDH: its scope; how it should align with other initiatives and principles; how it should be governed; the role of different stakeholders; how funding should be mobilised and distributed; and how the success of the initiative should be measured.

At the opening of the virtual consultation, Transform Health’s Executive Director Mathilde Forslund welcomed the G20’s prioritisation of digital health and the huge opportunity for this to help take forward recommendations in the coalition’s digital health investment report that was launched last year. The report looks at the challenges within the current funding landscape for digital health and lays out six key recommendations for national governments, international donors, and the private sector to increase and improve investments towards building digitally-enabled health systems that improve health outcomes for all. 

Key stakeholder recommendations from the consultation

More than 80 individuals from over 50 organisations provided feedback on the GIDH. Contributions came from across the globe and represented a diverse range of sectors, including civil society, bilateral donors, multilateral agencies, health implementing organisations, regional digital health networks, youth networks, academic institutions and technical agencies.

Stakeholders recommended that the initiative should:

• Set a bold, global vision for the digital transformation of health, and also deliver tangible outcomes for LMICs in areas such as:
  • Increasing the capacity of governments and their partners to build stronger and more equitable digitally-enabled health systems;
  • Strengthening global governance and regulatory frameworks for digital technologies and data; and
  • Establishing sustainable investment models to support the development and implementation of digital health strategies.

• Align with existing initiatives – notably the WHO’s digital health strategy – and help improve coordination and alignment between different initiatives and networks.
• Be grounded in existing principles for digital development, data governance and donor alignment, as well as human rights.
• Leverage existing organisational structures and funding instruments to reduce costs and further fragmentation of the global health architecture. An independent and inclusive governance and oversight mechanism should however be created.

• Reflect the diverse ecosystem of global, regional and national stakeholders involved in digital health, including end users, in the initiative and its governance. 

• Prioritise funding to support the development and implementation of national digital health strategies. Funding streams could also be made available for other organisations to deliver activities that support national digital health strategies and/or cross-border goals. 
• Focus on LMICs who are most off-track to achieve UHC and with lowest levels of digital health maturity.

READ THE FULL CONSULTATION REPORT

Transform Health’s asks for the World Health Assembly, UHC High Level Meeting and G20

Digital health is already an important and growing part of most health systems. It offers a huge opportunity to accelerate progress towards achieving the Sustainable Development Goal of reaching Universal Health Coverage (UHC) by 2030. The equitable, inclusive and sustainable digital transformation of health systems can help scale up access to primary health care services, strengthen resilient health systems, close equity gaps to deliver health for all.

Despite progress, many countries are not on track to achieve their UHC targets by 2030, with the COVID-19 pandemic having thrown many countries off course. The High-Level Meeting on UHC, taking place on the 21st of September, is an important juncture to spur action towards achieving UHC goals and to hold world leaders accountable to commitments made just four years ago in the Political Declaration from the 2019 United Nations High-Level Meeting on UHC. The 76th World Health Assembly in May and this year’s G20, which has prioritised digital health, are key milestone moments to help stimulate needed commitments and action.

 

 

 

 

 

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1. Prioritise digital health transformation as a cross-functional enabler and accelerator to achieving UHC by 2030, rather than a siloed vertical health issue.
   
2. Champion health data governance and call for the development of a global framework to establish a set of common regulatory standards (for subsequent endorsement by governments at the World Health Assembly in May 2023), to strengthen national legislation and regulation and govern health data sharing across countries.
   
3. Ensure a global health data governance framework is developed through a transparent and inclusive multistakeholder process (with the meaningful engagement of civil society) and underpinned by equity and rights-based Health Data Governance Principles. We call on governments to endorse the Principles, which provide a foundation for the development of a global framework and should inform national legislation, regulation and policies.
   
4. Increase and better target funding for digital health, to support the equitable, inclusive, sustainable digital transformation of health systems, as part of wider health system investment to deliver UHC. Ensure funding is coordinated and aligned with national priorities.
   
5. Develop national costed digital health strategies as an integral component of UHC and health system strengthening agendas. Strategies should be developed, implemented and monitored in an inclusive and participatory manner, with the involvement of all relevant stakeholders.
   
6. Establish a strong national regulatory and policy environment to guide the digital transformation of the health system so that it is inclusive, equitable and sustainable. This is important to establish what kind of digitalised health system a country needs to achieve UHC.
   
7. Strengthen mechanisms for meaningful multi-stakeholder engagement at all levels of planning, strategy, execution and monitoring to ensure the digital transformation is effective in improving health outcomes and accelerating UHC progress. This must include the meaningful engagement of civil society, youth, women and marginalised and hard-to-reach communities.
   
8. Close the divide in digital access, prioritising strategic, targeted and coordinated actions to ensure this happens. This is a prerequisite for equitable access to technology-enabled health services. This means confronting coverage gaps, affordability and digital literacy.

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We cannot miss this critical opportunity to prioritise digital health and health data governance to accelerate progress towards achieving Universal Health Coverage by 2030.

Transform Health’s reflections on International Women’s Day 2023

Today is International Women’s Day. Under this year’s theme, ‘DigitALL: Innovation and technology for gender equality’, we reflect on the opportunities that innovation and technology offer to improve gender equity in health access and outcomes, while also recognising current barriers and challenges, that if not properly addressed will only perpetuate disparities and widen the gender divide.

Transform Health has been advocating for the digital transformation of health as a route to strengthening primary health care and accelerating progress towards Universal Health Coverage (UHC). Digital tools can improve the accessibility, affordability and quality of health services, presenting enormous opportunities for advancing UHC and improving health equity. This includes a huge opportunity to address gender inequalities in health access and outcomes and improve women’s and girls’ health and wellbeing. However, if gender is not prioritised as part of countries’ digital health transformation, including gender transformative policies and frameworks to protect the rights and privacy of citizens, with special considerations for the needs of different population groups, including women, girls and marginalised groups, we risk exacerbating inequalities and undermining human rights. 

On International Women’s Day, we reflect on the opportunities that innovation and technology offer to improve gender equity in health access and outcomes, while also acknowledging that current barriers, if not properly addressed, will only perpetuate disparities and widen the gender divide.

Gender inequalities affect health access and outcomes, with women and girls disproportionately impacted due to biased gender norms, limited access to/control over resources, restricted decision-making power, restricted mobility and limited ability to engage with health programmes, among others. Technology innovation brings in additional barriers – including limited access to mobile phones and lower levels of digital literacy.

However, digital tools can also give women and girls more power to support their health-seeking behaviour and empower them to track their own health data. Technology and the internet can improve women’s understanding of their own health needs and issues, which are usually deprioritised. Where women’s access to health services is low, digital health can help improve access and affordability through services such as telemedicine. 

To ensure this happens, the digital gender gap and digital literacy gap must be addressed to ensure meaningful participation in today’s digital age. Across low and middle-income countries (LMICs), women are 7% less likely than men to own a mobile phone and 15% less likely to own a smartphone. A global analysis of 133 systems across industries found that 44.2% demonstrate a gender bias and the data used to develop AI algorithms and other technologies is rarely representative of all ages, genders, ethnicities and regions. Therefore, when health planners are looking to allocate resources and implement programmes to address the health needs of the population, that may be skewed by an inaccurate picture of the situation with certain groups under-represented and thereby their health needs not being addressed. This will increase the gap between those who stand to benefit from digital health technologies, and those that are excluded and left behind.

A global analysis of 133 systems across industries found that 44.2% demonstrate a gender bias and the data used to develop AI algorithms and other technologies is rarely representative of all ages, genders, ethnicities and regions. (Source)

Closing the digital gender divide requires addressing the numerous barriers and challenges that exacerbate the digital gender divide, with concerted effort from various stakeholders, including governments, the private sector, civil society and individuals. 

Transform Health calls for communities to be at the centre of digital transformation in order to achieve UHC and leave no one behind. Governments and technology developers must involve diverse communities, including women, in the planning, design, decision making, implementation and monitoring of digital health policies and programmes. Women must be given adequate opportunities and resources to shape digital health and data governance and hold those in power to account. 

In 2023, Transform Health will be ramping up our work on gender and digital health. This will include:

• Co-creating positions to guide priority areas for action, working closely with coalition partners and wider stakeholders.
• Launching a new survey to hear from communities, organisations, health workers and other experts their perspectives on the key barriers, challenges and opportunities for the digital transformation of health systems to help close gender gaps in health outcomes and move us closer towards UHC and Health for All in the digital age.
• Developing our gender position as we continue to advocate for the equitable digital transformation of health systems – to achieve Universal Health Coverage for all by 2030.

Governments and technology developers must involve diverse communities, including women, in the planning, design, decision making, implementation and monitoring of digital health policies and programmes.

Transform Health is committed to doing work differently, to ensure that we operate in line with our core principles of equity, empowerment, rights, partnership and inclusion. When going against history and global systems, this takes concerted efforts. Check out our targets and how we track against them in our Equity and Inclusion Dashboard. 

If you are working on gender and digital health or have ideas on this issue and would like to collaborate, please reach out to Ndifanji Namacha.

~ Sharon Sitati

(Sharon is a writer, PR specialist, and sexual/reproductive health advocate based in Kenya with a focus on digital health. She aims to create a world of health and wellness for all)

Digital health has become an increasingly popular means for young people to access Sexual and Reproductive Health information and services. However, the experiences of young people with digital health reveal some concerns about its reliability, accessibility, privacy, and security.

Many young people express concern about misinformation on the internet, which can be particularly dangerous for those wanting to make decisions and unsure about whether what they are reading is an objective fact or just an opinion disguised as fact: “I am a Google person on a lot of stuff so I learn many great new things from different online platforms, but I do not trust most of this information 90% of the time,” says 23 year old Jane (not her real name).

Jane’s response is quite similar to that of Naomi’s, a student in one of Nairobi’s Universities in Kenya, who says that she is more concerned about misinformation on the internet. “There are a lot of apps, platforms and websites that masquerades as genuine health-informing even though they are not, but as a young naive person, I might not know.”  This is especially true for young people who may be too afraid or uncomfortable to discuss certain sensitive topics with their parents, teachers, or caregivers.

“My parents do not know that I am sexually active, and being a daughter from religious background sex before marriage is something you do not mention. I have to depend on the internet for information on the best contraception method it can suggest.” Say Sylvia, a high school student in Bungoma.

Sylvia and other young people turn to the internet to seek answers and may fall prey to inaccurate or misleading information. Sylvia’s sentiments remind me of the many times I have seen young girls with complications and reproductive health issues after using a contraception method suggested by their peers only for the body to react differently. It is crucial that young people have access to accurate, timely and reliable information about contraception, STDs, safe sex, and other issues related to Sexual and Reproductive Health.

However, even when accurate information is available, it may not be affordable for some young people to access certain services. For example, consulting a gynecologist or specialist may be costly and beyond the reach of many young people. Jane says although she might know platforms where she can talk to a specialist, affording the services like that of a gynecologist is expensive.  Additionally, young people may be uncomfortable or unwilling to share their personal information online, fearing that their privacy may be compromised. Digital health services must be affordable and prioritize data privacy and security to ensure that young people have access to reliable information without compromising their privacy.

Young people also express concern about the control and use of their data. Many are unaware of who controls their health data and how it is used. Jan says, “when I cannot access the data I fed into the forms, I do not feel like I have control over my data.” While some young people are comfortable with sharing their information online, others are more cautious and prefer to have greater control over their data. Jane says she stops or skips filing online forms immediately she starts feeling uncomfortable. She elaborates that the reason she skips or stops where she doesn’t feel comfortable answering is about the security of the information. “Being a Google person, I am aware there are data breaches and am concerned of what happens when my information leaks,” she says. The potential for data breaches or unauthorized access to personal information is also a major concern, and young people need to be informed about the security measures in place to protect their data.

Digital literacy is essential for young people to navigate the digital health landscape. Some young people may not know how to differentiate between credible and spurious sources of information or may not have the skills to access the information they need. Whereas Jane does not feel able to discern factual from non-factual information on the internet, she does not trust the information 90% of the time, for those with no digital literacy and who cannot access the internet they are missing out on important health information 100% of the time. Digital health providers must ensure that their platforms are user-friendly, accessible, and designed with the needs of young people in mind, wherever they may live.

Knowing where to get Sexual and Reproductive Health information and services online is a life saver especially for young people who are afraid to talk to their caregivers about what they are going through. Even though some say more information on sex makes them want to explore the taboos around sex and talk about it more, having such information recommended to you by an online platform can be annoying. It also acts as a constant reminder that someone knows what you have been looking up and are keeping tabs on you. Social Media monitoring and tracking will make people feel less comfortable looking up for information. Imagine searching about safe abortions only for you to keep bumping into the same even though you never wanted anybody to know?

At a time when Kenya still criminalizes same sex relationships, people from key populations may face discriminations when looking up information or accessing services that could save their lives.

Digital health has the potential to improve access to Sexual and Reproductive Health information and services for young people. However, digital health services must address concerns about reliability, affordability, privacy, and security to ensure that young people have access to accurate reliable information without compromising their privacy. Additionally, digital literacy and access to reliable sources of information must be prioritized to ensure that young people can navigate digital health services safely and confidently. Young people’s experiences and feelings about health data are shared by many across the population. That is why we need a health data governance legislation that is underpinned by the principles of human rights and equity.

LEARN MORE ABOUT STRONGER HEALTH DATA GOVERNANCE