Dear HIFA colleagues
Below is a version of my presentation for April 26th at Hangxhou, China. [see https://www.hifa.org/dgroups-rss/hifa-united-nations-world-data-forum-ha... and https://unstats.un.org/unsd/undataforum/index.html ]
We will summarise and forward the UNWDF presentations for the workshop for consideration for sharing with HIFA before the event
Transformhealth have been lobbying the Secretariat of the 76th WHA to include personal health data information governance on the 75th WHA agenda - unsuccessfully but hopeful for the 77th WHA…
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UN World Data Forum presentation TA2 02 A global Information governance standard?
The world processes much personal health data. Information governance needs to be consistent and well applied.
Stigma, shame, commerce and politics create concerns about data sharing with concerns around political and commercial gains and around the stigmatisation of individuals which if not respected will undermine public confidence and trust in personal health data processing.
(Transform Health, 2021; Davis and Williams, 2020 Home | Transform Health (transformhealthcoalition.org)
Have a vision of universal Health Coverage (UHC) will be achieved by 2030 by harnessing digital technology and the use of data.
Their mission is to build a global movement that brings together organisations and institutions across sectors who are committed to achieving UHC within the next ten years by expanding the use of digital technology and increasing access to data.
Their objectives are building consensus and political will with recognition of the fundamental role of digital technologies and data use to transform and strengthen health systems to expand primary health care which is an essential foundation for achieving UHC by 2030.
They advocate a global health data governance framework to allow for full beneficial, impactful, and responsible management of health data, while safeguarding data privacy, ownership and security.
To strengthen digitally enabled primary health care systems in low and middle income countries to achieve UHC by 2030.
Members, Holly, Thom, Elzemety, Murage, Mathieson, Petralanda’s wrote to introduce a new set of equity and rights-based principles for health data governance (HDG) with a case for adoption into global, regional and national policy and practice in the March 8th International Journal of Health Governance Issue(s) available: 28 – From Volume: 21 Issue: 1, to Volume: 27 Issue: 4
They cluster principles around three interconnected objectives:
1: To protect people
Protect individuals and communities
Build trust in data systems
Ensure data security
2. To promote health value
Enhance health systems and services
Promote data sharing and interoperability
3. To promote equity
Promote equitable benefits from health data
Establish data rights and ownership
Finally, the authors, Holly, Thom, Elzemety, Murage, Mathieson, Petralanda suggest that principles should be developed by traditional digital health and data experts AND representatives of groups directly affected by HDG, including youth, women and marginalised communities.
In the UK the National Data Guardian writes: “Say as you do, and do as you say” and that information governance should:
1. Safeguard trust in the confidentiality of the system
2. Encourage safe, information sharing for individual care
3. Support understanding and engagement about data use
4. Encourage safe, ethical data use that benefits the public.
and the UK NHS head of transformation describes ho personal health data processing has different information requirements for direct clinical care, public health, planning and research
The WHO’s Global Strategy on Digital Health 2020–2025 recognises the need for international agreements and principles within two to four years (WHO, 2021a).
Last thought!! –
How can you be assured that the data about you that is being shared is correct and “confidential" (only sharing what you say can be shared) ?
By accessing and viewing your own records!!
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
