making the case for stronger health data governance

Making The Case For Stronger Health Data Governance

As the World Health Organization brings together experts for a Health Data Governance summit (June 30th), and as health leaders consider the inclusion of digital technology at the World Health Assembly and at the G7, governance of digital technologies, data and artificial intelligence (AI) has never before seen the level of priority and attention, particularly in the wake of COVID-19. Transform Health takes the opportunity to continue reflecting on this critical issue by making the case for stronger global health data governance to close the digital divide and invest in digitally-enabled health systems, particularly for the most vulnerable such as women, children and adolescents. This is core to what Transform Health has set out to do since 2018 when founding partners decided to come together to advocate and campaign for a global health data governance framework that allows for meaningful and trustworthy use of health data, while safeguarding data privacy, ownership and security.

Why do we need digital transformation of health systems now?

At the United Nations General Assembly in 2019, Heads of State adopted the UN Political Declaration on Universal Health Coverage (UHC). The Declaration — which is founded upon Sustainable Development Goal 3, the Constitution of the World Health Organization and the right to health — reiterates WHO’s UHC target of expanding access to essential health services to at least three billion additional people by 2030.1,2,3 However, governments are off-track to meet their UHC commitments. On current trends, up to five billion people worldwide will still not have access to essential health services by 2030.4 

Attaining UHC today requires urgent, equitable and inclusive digital transformation of health systems in lower and middle-income countries.5 Digital transformation of health systems includes scaling up the use of existing technological tools such as electronic medical records and health management information systems, but also innovation such as novel telemedicine approaches and digital epidemiology.6 

Such digital technologies depend fundamentally on data: personal and non-personal, health and non-health. Rights-based, reliable and representative health data management is crucial to digital transformation. When utilised responsibly, digital health technologies and high-quality data can accelerate health equity by making health systems stronger, more effective, and more responsive to the needs of the populations they serve. 

Why do we need effective health data governance?

Strengthening the governance of health data necessitates specific and urgent attention by policymakers to protect people from the nefarious or discriminatory use of personal and sensitive information.7 Effective governance of health data is required to maximise the enormous public health benefits that this data can generate whilst protecting the rights of individuals.  

Health data often undergoes several journeys in its life cycle: collection, storage, use, analysis, dissemination and disposal. The global health community currently lacks national and community-level policies to effectively manage data during these trajectories. Furthermore, individuals often have little or no awareness of what happens to their health data and who has access to it.

Additionally, there are no universally accepted global or national benchmarks, standards, guidelines, regulations and policies to effectively govern these different journeys and varied aspects of health data. These are necessary to prevent the misuse of health data, reduce missed use of data and to address gaps around missing data.

There is a need for human rights-based, regionally relevant representative principles for participatory and efficient health data governance.

Existing global governance instruments present targeted recommendations for national digital and data governance; but do not specifically address health data.8,9,10 They also do not sufficiently capture the lived reality of communities or primary health care providers in relation to the adoption and use of digital technology and data across different contexts.. Nor do they address the needs of the different stakeholders and communities involved in digital health innovation and health data use. 

There is a need for human rights-based, regionally relevant representative principles for participatory and efficient health data governance. Such principles are imperative to building and strengthening a global health data governance framework that will enable the use of digital technologies and data for the public good. 

What’s really feasible?

A global governance framework on health data would enable the development and implementation of globally agreed and standardised regulation to govern the vast spectrum of digital health innovation today. Effective digital health governance also requires regional, national and community level guidance and expertise that addresses the cultural and contextual needs of citizens and communities.  Globally unifying principles are a step towards this. 

In response to this, Transform Health is currently leading the development of a set of human rights-based and regionally representative Health Data Governance Principles as a first step in the development of a set of global principles, to provide a basis on which governments and multilateral institutions can take forward. These principles are designed to enable equitable and responsible health data management, while safeguarding data privacy, ownership, and security. 

What more is required?

Developing principles is a first step towards stronger and more stable national and global health data governance. However, the existence of principles alone will not address health data governance gaps at all levels. Normative standards and national legislation is needed to embed these principles into national law and provide people with the same standards of protection and with that the confidence to share their data for public good purposes. 

Transform Health partners held a series of consultative regional workshops that enabled accountable stakeholders to conceptualise key digital health practices that must complement the Principles. These include meaningful benchmarking, impactful intervention design, sustainable intervention scale up, political will, inclusive data management, and more. The Principles must hence be strengthened by further relevant technical and policy guidance that enable inclusive and equitable data governance legislation and policies in different global contexts to be complementary. 

The elaboration of legislation and regulation on data governance at the national level needs to be based on equitable and inclusive multi-stakeholder collaboration between governments, private sector, research institutes, civil society and international organisations. This will ensure the process of elaborating such legislation is able to respond to the needs and concerns of different sections of society. 

Such solutions are urgently needed to address the associated multidimensional technological, ethical, legal and political challenges. For instance, data collection and storage systems (oftentimes regulated by governments and developed by the private sector) may present reliable data (as evidenced by research), but they must also ensure privacy and safety of citizens contributing their personal data (which may be promoted by advocacy from civil society and guidance from international organisations); this is especially crucial with health data. 

What does all this really mean?

There is an urgent and clear need for an overarching health data governance framework that addresses key practical questions around benefit sharing and burden sharing. The Health Data Governance Principles discussed above represent progress towards such a framework. The principles should be developed through equitable and inclusive processes, and include clear definitions, clarifications and guidance on the use and management of health data.

The way governments around the world govern health data has never been more pivotal than it is in this digital age.

The digital transformation in the ongoing ‘technology revolution’ has added an extra dimension to our human subjectivities. Being human nowadays also means being a set of data points. The way governments around the world govern health data has never been more pivotal than it is in this digital age. We all have a role to play to ensure such global health data governance is inclusive and participatory. 


Annex 1: Relevant definitions

Health Data – Any data that relate to the physical or mental health of an individual, or to the provision  of health services to the individual. Any personal data that reveal information about an  individual’s health status, such as immunization status, blood pressure readings, and  diagnostic results.  

Data for Health – Data that do not specifically describe the health status of individuals, but are used to  support health decisions, such as demographic data, telecommunications data, and  weather data. 

Data Privacy – The appropriate protection of personal data of individuals from other individuals, organisations or entities who have not been given the right to access it. Privacy may also encompass agency: the ability of a citizen to make their own decisions about how their personal data and information are managed. 

Data Rights – Individual data rights gives people the rights needed to stipulate how their data are used.  Beyond data privacy, data rights are seen to include aspects such as the right of people  to be secure against unreasonable surveillance and the right to not be unfairly  discriminated against based on data.  

Principle – A foundational rule or belief that governs behaviors, actions, and policies.  

Policy (or policy framework) – A set of principles and long-term goals that form the basis of making rules and  guidelines and give overall direction to planning and development for an organization.


References

  1. Health – United Nations Sustainable Development. United Nations; 2015. (https://www.un.org/sustainabledevelopment/health/, accessed 20 June 2021) 
  2. Constitution of the World Health Organization. WHO; 1948. (https://www.who.int/about/who-we-are/constitution#:~:text=The%20Constitution%20was%20adopted%20by,force%20on%207%20April%201948, accessed 5 April 2021)
  3. Universal Health Coverage (UHC). WHO; 2020. https://www.who.int/health-topics/universal-health-coverage#tab=tab_1
  4. Tracking universal health coverage: 2017 Global Monitoring Report. WHO; 2017. (https://www.who.int/healthinfo/universal_health_coverage/report/2017/en/, accessed 15 April 2021)
  5. Low & middle income | Data – World Bank https://data.worldbank.org/country/XO 
  6. Tarkoma S, Alghnam S, Howell MD. Fighting pandemics with digital epidemiology. The Lancet. 2020. 26: 100512, SEPTEMBER 01, 2020. Doi: https://doi.org/10.1016/j.eclinm.2020.100512
  7. Classification of digital health interventions v1. WHO; 2018. (https://www.who.int/reproductivehealth/publications/mhealth/classification-digital-health-interventions/en/, accessed 5 May 2021)
  8. International health regulations. WHO; 2005. (https://www.who.int/health-topics/international-health-regulations#tab=tab_1, accessed 6 May 2021)
  9. General Data Protection Regulation (GDPR) – Official Legal Text. EU; 2018. (https://gdpr-info.eu/, accessed 6 May 2021)
  10. Health Insurance Portability and Accountability Act of 1996 (HIPAA). CDC; 1996. (https://www.cdc.gov/phlp/publications/topic/hipaa.html#:~:text=The%20Health%20Insurance%20Portability%20and,the%20patient’s%20consent%20or%20knowledge, accessed 6 May 2021).

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