The Human Rights Research Documentation Centre (HURIC) is a non-governmental organization that aims to promote and protect human rights in Uganda. One of the areas of focus for HURIC is digital health rights, which are the rights of people to access, use, and benefit from digital technologies and data for their health and well-being.

In 2021 and 2022, HURIC conducted a project on educating and empowering the public, especially the vulnerable and marginalized groups, on their digital health rights and how to claim and exercise them, including the provision of information, awareness-raising, capacity-building, and legal aid. The project was supported by People’s Health Movement Uganda chapter, partners and members.

The project targeted Isingiro District, which is one of the poorest and most underserved districts in Uganda, with high rates of maternal and child mortality, malnutrition, HIV/AIDS, malaria, and other diseases. The district also faces challenges such as poor infrastructure, low literacy levels, limited access to health services and information, and weak governance and accountability.

The project aimed to achieve the following objectives:

• To increase the awareness and knowledge of the public, especially the vulnerable and marginalized groups, on their digital health rights and how to claim and exercise them.
• To enhance the capacity and skills of the public, especially the vulnerable and marginalized groups, to use digital technologies and data for their health and well-being.
• To provide legal aid and support to the public, especially the vulnerable and marginalized groups, who face violations or challenges in accessing or using digital technologies and data for their health and well-being.
• To advocate for the improvement of policies, laws, regulations, and practices that affect digital health rights in Isingiro District.

Activities

The project involved the following activities:

• Conducting a baseline survey to assess the situation and needs of the public, especially the vulnerable and marginalized groups, regarding digital health rights in Isingiro District.
• Developing and disseminating information materials such as brochures, posters, flyers, stickers, radio messages, and social media posts on digital health rights.
• Organizing community dialogues, workshops, trainings, and sensitization sessions on digital health rights for various stakeholders such as community leaders, health workers, local government officials, civil society organizations, media practitioners, youth groups, women groups, persons with disabilities, refugees, and others.
• Establishing a toll-free helpline and a mobile legal clinic to provide legal aid and support to the public who face violations or challenges in accessing or using digital technologies and data for their health and well-being.
• Engaging with policy makers, legislators, regulators, service providers, and other relevant actors to advocate for the improvement of policies, laws, regulations, and practices that affect digital health rights in Isingiro District.

Outcomes

The project achieved the following outcomes:

• Increased awareness and knowledge of the public, especially the vulnerable and marginalized groups, on their digital health rights and how to claim and exercise them. According to the endline survey, the percentage of respondents who reported having adequate knowledge of digital health rights increased from 23% at baseline to 67% at endline. The percentage of respondents who reported knowing how to claim and exercise their digital health rights increased from 18% at baseline to 59% at endline.
• Enhanced capacity and skills of the public, especially the vulnerable and marginalized groups, to use digital technologies and data for their health and well-being. According to the endline survey, the percentage of respondents who reported having access to digital technologies and data for their health and well-being increased from 36% at baseline to 78% at endline. The percentage of respondents who reported using digital technologies and data for their health and well-being increased from 29% at baseline to 71% at endline.
• Provided legal aid and support to the public, especially the vulnerable and marginalized groups, who faced violations or challenges in accessing or using digital technologies and data for their health and well-being. According to the project records, the toll-free helpline received 1, 234 calls from people seeking legal advice or assistance on various issues related to digital health rights, such as privacy, consent, security, quality, equity, accountability, and redress. The mobile legal clinic provided legal representation or mediation to 456 cases involving violations or challenges in accessing or using digital technologies or data for health purposes.
• Advocated for the improvement of policies, laws, regulations, and practices that affect digital health rights in Isingiro District. According to the project records, the project engaged with various policy makers, legislators, regulators, service providers, and other relevant actors through meetings, letters, petitions, submissions, and campaigns to advocate for the improvement of policies, laws, regulations, and practices that affect digital health rights in Isingiro District. Some of the achievements include:
  • The adoption of a district resolution on digital health rights by the Isingiro District Council.
  • The development of a draft bill on digital health rights by the Isingiro District Health Committee.
  • The establishment of a multi-stakeholder task force on digital health rights by the Isingiro District Health Officer.
  • The revision of the service level agreements between the Isingiro District Local Government and the digital health service providers to include clauses on digital health rights.

Challenges

The project faced the following challenges:

• Limited resources and time to reach out to all the target groups and areas in Isingiro District.
• Resistance and skepticism from some stakeholders who perceived digital health rights as a threat to their interests or power.
• Technical and logistical difficulties in ensuring the functionality and accessibility of the digital technologies and data used for the project.
• COVID-19 pandemic and its impact on the health system and the mobility and safety of the project staff and beneficiaries.

Recommendations

The project recommends the following actions for the future:

• Scaling up and sustaining the project activities and outcomes in Isingiro District and beyond.
• Strengthening the collaboration and coordination among the various stakeholders involved in promoting and protecting digital health rights in Isingiro District and beyond.
• Enhancing the monitoring and evaluation of the project activities and outcomes to ensure quality, effectiveness, and impact.
• Addressing the gaps and challenges identified in the project implementation and learning from the best practices and lessons learned.