76th WHA side event on Global Health Data Governance - I have highlighted (my) favourite bits

19 June, 2023

Towards a Global Health Data Governance Framework - Transform Health at #WHA76 side event. https://www.youtube.com/hashtag/wha76

30% of world data is produced by the health sector. Health Information cannot be created without first collecting health data. Transformhealthcoalition “saw clear political momentum to initiate the development of a global health data governance framework, for endorsement through a resolution at next year’s World Health Assembly to build on this momentum and ensure the development of a framework starts now.”

This event was a side event at the 76th World health Assembly, which was co-hosted by the Ministries of Health of Cameroon, India, the Maldives, Philippines and Sri Lanka. It was also hosted by the WHO directorate of Data Analytics. Over 2 half days in June and September 2021, the WHO health data governance summit identified potential solutions to the challenges of implementing standards, solutions and infrastructure to increase the value of health data as a strategic asset. Best practices and challenges included data from public health, routine health structures, research, trials and GIS, with specific focus on data storage, sharing, legal and ethical aspects. 100 countries have adopted a WHO standard.

The Global Health Data Governance side event was organized by Transform Health (transformhealthcoalition.org to harness the potential, and manage the risks, of health data sharing within and across borders, countries must work together to develop a set of common regulatory standards for the governance of health data, underpinned by equity and rights-based principles. The event was aimed to keep pace with innovation and the growing potential for health data. Other recorded events can be seen through youtube at #wha76 - YouTube. https://www.youtube.com/hashtag/wha76

TransformHealthcarecoalition Home | Transform Health (transformhealthcoalition.org) will support a session on the future development of a global HDG framework underpinned by equity and rights at the77th World Health assembly in 2024. This is already supported by 150 organizations and governments.

“The main objectives of this side-event were:

- To build support for a global health data governance framework, underpinned by equity and rights-based principles, and the importance of this being developed through an inclusive process.

- To galvanise commitments and action from governments and other stakeholders to initiate the development of a global framework for endorsement in 2024.

Ministers from Zanzibar, The Maldives, The Phillipines, India, African CDC and Costa Rica presented their expectations, experiences and hopes for and of health data gathering.

The discussions covered the diversity of health data gathering in community health, dispensaries, health centres, district hospitals, regionals, the public centre, the private sector and from citizens themselves. Educational and social determinants of health were collected in some countries and work to improve compliance with treatments was aided by data gathering as were trust in health data systems Governments to support Global Health Data governance (HDG)..

At 59 minutes Sri Lanka discussed – the importance of the covid passport and of even sharing of data with private health insurance during the pandemic. The pandemic had accelerated data governance and international regulation changes. Sri Lanka was considering different levels of data sharing – with the client (citizen) as well.

1 hour 02 minutes The Phillipine Islands expressed a need to collect data from the private sector as well as from the public sector.

At 1 hour 06 minutes Tanzania demonstrated a lack of integration of health data gathering and sharing and that regulation changes were desirable.

At 1 hour 09 minutes Indonesia stated that regulation needed to reduce criminalization and discrimination and at 1.29 we were asked “Who will prevent the data thieves thieving data?”

At 1 hour 11 minutes Africa CDC discussed the significance of data for public health, governments but stated that data is also valuable to service providers, and, perhaps most importantly “individuals” to support individual decision making in everyday life. What would happen if we let young people have the data in their own hands?” The African CDC speaker felt that “a revolution in health equity awaits us and global data governance can work if it assumes that the data about people belong to the people.”

At 1 hour 20 minutes we were informed that we need to start from the community working up. Trust is important and a shared and well communicated regulatory frameworks are necessary for trust.

At 1 Hour 22 The interaction of medical ethics, Individual discretion and international Health Regulations (IHR International health regulations (who.int) https://www.who.int/health-topics/international-health-regulations#tab=t... ) were discussed.

Finally at 10 hour 30 minutes the Director of Data and Analytics at the WHO stated that “We all want to achieve UHC. We cannot talk about patient centred data and patients being able to use their data without Health Data governance.” “The recent G7 summit emphasized the importance of a universal health data governance”. We also need to think about the UN supported and wider data governance framework in other sectors. This is not competing with health data governance.”

“In the next few months leading up to September, ministries and member states governments will be negotiating and you (ministers) will be negotiating on the Universal Health Coverage declaration, the SDG summit declaration and the global digital compact declaration. These are opportunities to put health data, data and governance on the front of the global agenda.”

HIFA profile: Richard Fitton is a retired family doctor - GP. Professional interests: Health literacy, patient partnership of trust and implementation of healthcare with professionals, family and public involvement in the prevention of modern lifestyle diseases, patients using access to professional records to overcome confidentiality barriers to care, patients as part of the policing of the use of their patient data. Email address: richardpeterfitton7 AT gmail.com