The UN World Data Forum starts on Monday 24th April in Hangzhou China. [*see note below]
Below is our workshop's presentation on global personal health data processing
Unstats.un.org
*Slide 1* “Thankyou very much for inviting me to join the United Nations World Data forum and for the hard work and organization behind the forum’s development.
*Slide2* “I am going to speak about the governance that is required for the processing of personal health data and the need for common and global personal health data processing governance standard. I looked to see how much data is created every day in a website "
seedsscientific.com
“The amount of data in the world was estimated to be *44 zettabytes* at the dawn of 2020.
By 2025, the amount of data generated each day is expected to reach *463 exabytes* globally.
Google, Facebook, Microsoft, and Amazon store at least *1,200 petabytes* of information.
The world spends almost *$1 million* per minute on commodities on the Internet.
Electronic Arts process roughly *50 terabytes* of data every day.
By 2025, there would be *75 billion* Internet-of-Things (IoT) devices in the world
By 2030, *nine out of every ten* people aged six and above would be digitally active.
“An RBC capital Markets article states " Today, approximately 30% of the world’s data volume is being generated by the healthcare industry. By 2025, the compound annual growth rate of data for healthcare will reach 36%.
That’s 6% faster than manufacturing, 10% faster than financial services, and 11% faster than media & entertainment.""
“I understand that personal health data needs to be governed consistently and well within the objectives of the 17 SDGs.
*Slide 3 “*There are, have been and will be in the future, public concerns about the commercial, political, and possibly stigmatising problems produced by the processing of personal health data. These concerns undermine progress, public confidence and trust in personal health data processing. These concerns are well described by Transform Health and Davis and Williams.
*Slide 4 *“Information/data governance, according to the UK National health Data Guardian, Nicola Byrne, should fulfil four criteria;
1. Safeguard trust in the confidentiality of the data that is being processed
2. Should positively and proactively encourage data sharing for safe effective patient care
3. Should include the creation and publishing of materials for a range of literacies to support professional and public understanding of and engagement with personal health data use
4. Should encourage the use of data that benefits the public – that is – should be of public benefit.
*Slide 5 *“Our workshop is not alone in wishing for a global and common health data governance. The WHO Global Strategy 2020to 2025 on digital health recognises the need for international agreements and principles by 2025.
*Slide 6 *“ In the International Journal of Health Governance, Holly, Thom, Elzmety et al…..
*Slide 7 *“…..call for the introduction of a new set of equity and rights based principles for health data governance. The authors make a case for the adoption of the rights-based principles into global. Regional and national policy and practice.
*Slide 8 *“The principles are clustered into three connected objectives
1. To protect people
2. To improve value in the health system
3. To prioritise equity
*Slide 9 *“The first principle should protect individuals and communities, build trust in health systems, and ensure data security.
*Slide 10 *“The second principle should enhance the productivity and effectiveness of health systems and services, promote data sharing and interoperability, and facilitate health care innovation using health data.
*Slide 11 *“The third principle should promote equitable benefits from health data for all, and establish data rights, responsibilities, and ownership.
*Slide 12 *“The principles should be developed jointly and proactively by traditional digital health and data experts *AND *by representatives of he groups directly affected by personal health data processing, including young people, women, and marginalised communities.
Slide 13 “A last thought! How can we assure ourselves that the data about us that is being processed and shared is being processed and shared correctly and as agreed? By accessing, viewing, and owning copies of the data and audit trails to the data, ourselves,
Thankyou
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
[*Note from HIFA moderator (NPW): Thank you Richard for representing HIFA at the conference and we look forward to welcome new members to HIFA next week, including delegates from China.]
