[Re: https://www.hifa.org/dgroups-rss/population-technology-and-research-cont... ]
Chris,
I also agree that challenges, including those linked to health misinformation, misuse of personal data and inequitable access, must be addressed in order to ensure that technological advances benefit everyone.
A small group of us presented our thoughts and experiences (TA2.02) [ youtube.com/watch?v=A4fj-PilyZ0&list=PLBc4lThqX-WObz0EEdQkWF9f0TTJF814q&index=31&t=1037s ] Inclusion of the citizen, children, families, disabled persons and primary care team in ... the governance of personal health data at the UN World Data Forum in Hangzhou China in April 2023. Our presentations covered the requirement of transparency of the way in which data about us is processed and about the organizations or bodies that are processing them. We have applied to present again at the 6th UN World Data Forum in Riyadh Saudi Arabia in November covering sovereignty, patient access to, use of, ownership of their personal health records, and the role of patient access to their records in the information governance of the processing and sharing of personal health data.
Professor Ben Goldacre has headed work to design Better, broader, safer: using health data for research and analysis - GOV.UK . including the use of trusted research environments. [ https://www.gov.uk/government/publications/better-broader-safer-using-he... ] A review of Ben Goldacre's report can be seen at Our Impact | use MY data. [ https://www.usemydata.org.uk/our-impact ]
Health records have an integral capital value outside of their retail value. “The House of Lords Select Committee on Artificial Intelligence HL Paper 100 Report of Session 2017–19 [ ] reported that: “the NHS holds data on nearly everyone in the UK; some of it going back decades. Lord Henley recognised this intrinsic value when he told us the “advantage of having a National Health Service is the quantity and the quality of the data that we have, which other countries do not necessarily have”. “Dr Hugh Harvey, a consultant radiologist and artificial intelligence researcher, suggested IBM’s acquisition of Merge Healthcare in the USA for $1 billion, which netted them five to six million patients’ records, might be indicative of the value of the data held by the NHS. The Royal Society’s report, Machine Learning: the power and promise of computers that learn by example, cited a figure of £1.8 billion for the direct value of public sector data, and put the wider socio-economic benefits at a minimum of £6.8 billion.” “Nicola Perrin, who led the Understanding Patient Data initiative at the Wellcome Trust at that time, said that the public “do not like the idea of the NHS selling data, but they are even more concerned if companies are making a profit at the expense of both the NHS and patients”.
Following the report in the Financial Times of 24th August 2019 entitled “Leveraged loan funds head for record outflows after investors pull $35 billion” Trump tirade alarms investors”, a patient wrote “Data does have ‘value’ - but to the owners of that data only if it is used for their benefit. If merely ’sold’, the value will be perceived as going to the acquirer. And likely with good reason. Corporate profits up; health outcomes down. Everyone has a stake - so maybe everyone should be an owner with 100% public ownership. What is the structure to best support the Government's needs to support health data processing? What structures with members of experience and competence should be put in place to oversee and support health data processing?
“What body represents the patients? The ‘body’ needs to be led by someone with high integrity who can relate to both The Big Four tech companies and the Public, and able to lead the politicians in cross-party politics to get firstly acceptance and then ‘value’ from what has to be an incredible opportunity. The body should be able to report to, and communicate with the public in their ‘frames of reference’ - i.e. what matters to the public. The body should have other ‘members’ chosen for their expertise and integrity - people with a willingness to put the health of the country way ahead of the health of their personal bank account. Reports and extracts over recent years suggest that enough progress has been made on recognising and understanding how to manage confidentiality issues.
Compensation for profitable access to data does not necessarily have to be financial: it is clear that, by sharing data with researchers, it would be fair for the NHS to expect favourable (if not free) access to any AI-based products developed from patient data and some mechanism of demonstrating societal benefit from the data as it is being used.” Rather than rail against it, The Big Four tech companies should see a great opportunity to reposition themselves in the minds of the public - with benefits to them beyond their involvement in health.
Transparency needs to be at all levels, by all involved. Health funding needs to be 100% transparent if Governments have any hope of educating people about financial implications, about future choices that Society will have to make, and most importantly about how each person can manage / improve their own health as part of a future healthcare model. Demonstrating transparency in how ‘profit’ from data is being put back into the system will be key, with the right of patients to expect to be given clear, honest information about what is happening to their data and how the benefits (health outcomes) are being returned. Simplistically the “shareholders” must be the people who provide the data and allow it to be used - i.e. Everyone.
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