The use of AI was discussed at the "use MY data" conference" in relation to the use of patients' personal records by patients. AI has a role to convert patients' accessed or owned personal health record data to information, knowledge, understanding and eventually wisdom for patients through use of their AI expanded data - especially when pictures and images are incorporated. This use of AI would be especially helpful for promoting equity, diversity and inclusion, especially for patients and families with low literacy, low health literacy and low digital literacy. ( *** use MY data - 1645 https://www.usemydata.org.uk/content_db.php?page=1645 )
An organization called PEDRI *** presented their work on good standards of public engagement which I have pasted below. I think that these standards apply to the use of personal health records by patients, too. (*** Home - PEDRI https://www.pedri.org.uk/ )
"Good Practice Standards
"How do we ensure that public engagement in data is meaningful and not just a box-ticking exercise? We start with standards that guide good practice. Officially launched in January 2025, our Good Practice Standards are the result of two years of collaboration with professionals and public partners. These seven principles are designed to be clear, actionable, and adaptable:
"1. Equity, diversity and inclusion – Ensure representation of people from different backgrounds.
"2. Data literacy and training – Empower the public to understand and contribute.
"3. Two-way communication – Enable everyone to have open, honest and clear conversations.
"4. Transparency – Project information is freely accessible for discussions with the public.
"5. Mutual benefit – There is benefit to everyone involved.
"6. Effective involvement and engagement – There are clear tasks, purposes and impacts that are not tokenistic.
"7. Creating a culture of involvement and engagement – Public involvement and engagement is embedded into ways of working.
( *** use MY data - 1645 Use MY data held a well attended conference on. The conference was patient-designed and patient-driven. It brought together a live audience of 250 patients, relatives and carers, alongside a diversity of stakeholders in the patient data world, including health professionals, researchers, data controlling bodies, commercial data users, policy organisations, and media. )
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