Building Health Data Governance Principles That Meet Everyone’s Needs

Building Health Data Governance Principles That Meet Everyone’s Needs

Transform Health is currently leading the development of globally unifying, human rights-based Health Data Governance Principles that can provide a common vision for health data governance. These Principles are designed to enable equitable and responsible health data policy and governance frameworks at the global, regional and national levels. Being civil society-driven and civil society-oriented, the Principles are aimed to support the safeguarding of data privacy, ownership, and security at different governance levels. 

Why do we need Health Data Governance Principles?

Digitisation has allowed an exponential increase in the production and use of health data and data for health. This increased availability of timely data offers huge benefits for practitioners, policymakers and individuals seeking to improve personal and public health. At the same time, weak governance of health data risks exacerbating health inequities, perpetuating bias and discrimination towards marginalised communities, and undermining individual health and human rights. 

A set of globally accepted principles for health data governance that are regionally and sectorally representative is urgently required to redress the uneven distribution of benefits and harms that we currently see arising from the collection, analysis and use of health data. Consensus on high-level principles is an important step towards the creation of a global health data governance framework that could support the use of digital technologies and data for the public good.

A set of globally accepted principles for health data governance that are regionally and sectorally representative is urgently required to redress the uneven distribution of benefits and harms that we currently see arising from the use of health data.

Also read: Making the Case for Stronger Health Data Governance – Transform Health

A series of consultative workshops

The process of developing the Health Data Governance Principles has been designed to be inclusive and collaborative. To ensure the legitimacy and ownership of the final principles, Transform Health is actively engaging governments, international organizations, civil society, research institutions, and private-sector actors in the co-creation process. Participatory initiatives led by young people, women and marginalized communities are particularly crucial to create a set of Principles that will encourage no one to be left behind in the data revolution.

To ensure diversity of perspectives, Transform Health, alongside partners such as PATH, RECAINSA, AeHIN, Governing Health Futures 2030 and Young Experts: Tech 4 Health, has hosted a series of consultations in different regions and with different audiences over the past year. These workshops collected reliable and representative inputs from regional thought leaders from various organizations working on digital rights and data.

Here is a list of the consultations that were hosted:

  1. Regional workshop: Latin America and the Caribbean – conducted by Red Centroamericana de Informática en Salud (RECAINSA) on March 11, 2021, facilitated by PATH. 
  2. Regional workshop: Sub-Saharan Africa – conducted by the BID Learning Network on March 16, 2021, facilitated by PATH. 
  3. Regional workshop: South and East Asia – conducted by the Asia eHealth Information Network (AeHIN) on March 19, 2021, facilitated by PATH. 
  4. Regional workshop: Middle East and North Africa – conducted by Mwan Events on March 31, 2021, facilitated by PATH.
  5. Global workshop – conducted by PATH on April 29, 2021.
  6. Global workshop by Wilton Park – co-organised with Governing Health Futures 2030 – 7 July, 2021
  7. Youth workshop (global) by Wilton Park – co-organised with Governing Health Futures 2030 and Young Experts: Tech 4 Health – 14 July, 2021

The first five workshops – four regional and one global – facilitated by PATH for Transform Health, collected insights that fed into the first draft of the Principles. Once the draft Principles were ready, the second set of Wilton Park consultations collected further feedback and input from experts and young experts in two separate workshops in July. 

Transform Health is actively engaging governments, international organizations, civil society, research institutions, and private-sector actors in the co-creation process.

Key insights from the workshops

The workshops explored themes of national and community data governance mechanisms; data privacy and security; infrastructure and applications; human resources; technology and data standards; public engagement; and financial resources.

A recurrent challenge that came up across workshops was the lack of interoperable data standards, and fragmented and siloed approaches to digital health and health data governance. Concerns shared by participants included managing cross-border data sharing protocols associated with clinical research, telemedicine, artificial intelligence and collaboration between healthcare facilities such as getting second opinions. Participants advocated for a whole-of-government approach to ensure implementation of the Principles is systematically driven while bearing in mind specific sectoral needs. 

Most participants from across the MENA region, for example, reported the lack of nationwide strategies of a healthcare specific Information Governance strategy that is a constituent part of the national digital health strategy. In the same workshop, Saudi Arabia’s Health Information Governance Strategy was shared as a case study – it demonstrated an ambitious plan to bridge the information governance gaps across the highly complicated and fragmented healthcare ecosystem in the country. 

A recurrent challenge that came up across workshops was the lack of interoperable data standards, and fragmented and siloed approaches to digital health and health data governance.

Many participants agreed that good health technology would not work without trust in health data governance. Data access can often feel contradictory to data privacy. For example, in Sri Lanka, people are not willing to share data because no patient data sharing policy exists yet. One participant asked, “How do we find the balance between individual data rights and public rights?” There is a lack of clarity on what these data rights constitute.

With the lack of transparency in data, health data governance principles must start with informed consent – where patients are fully informed what the data will be used for. Another participant countered by saying that rather than focusing on consent, one should focus on accountability – how exactly will the data subject be protected? The question remains on how to operationalize data policies especially in marginalized communities, specifically in terms of balancing out the state’s need for data and the need to make the process person-centric. 

Participants also emphasised the need to work with existing multi-sectoral stakeholders so the Principles can have maximum impact when they’re launched. “It is important to think about health data governance within the context of the governance of data. The cross-sectoral conversations that we need to have (between the health sector, governments, and the private sector) about digital health… are around how we make health data governance part of wider data architecture,” said one participant.

The youth workshop saw discussions around how youth-led organisations and youth champions could be supported to take ownership of the Principles and hold stakeholders accountable for their implementation. They recommended financial support, capacity building, and more decentralised youth consultations to further develop, amplify and advocate for the inclusion of the Principles by young people.

 “Youth are hopeful that the developmental process of the Principles will instill accountability mechanisms that are intergenerational, cross-sectoral, and lead to strengthened monitoring and evaluation processes,” said a participant at the youth workshop. 

Also read: Global thought leaders and experts discuss principles of health data governance – Governing Health Futures 2030

The way forward

Transform Health continues to establish and explore meaningful collaborations with global multi-sector stakeholders for impactful development and implementation of the Principles, and to understand their scope and effect in different countries and regions. We envision the Principles to inform the development of an inclusive and equitable global health data governance framework.

After this series of consultations, a workshop for Transform Health members and partners is scheduled on September 27, 2021, offering another opportunity for individuals and organisations to add their input to the next draft of the Health Data Governance Principles. Click here to register for it! Transform Health partners will also organise further national and sectoral level consultations on the Principles later this year.

A draft set of Principles will be put up for broad online public feedback in October before they are finalised and launched in early 2022.

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