Thanks, Chris. [ https://www.hifa.org/dgroups-rss/quality-140-digital-identity-4-confiden... ]
There is a good public facing website about these issues at
And the February 2021 meeting notes can be found here:
"Understanding Patient Data aims to make uses of patient data more visible, understandable and trustworthy, for patients, the public and health professionals.
We work with patient groups, charities, NHS organisations and policymakers to bring transparency, accountability and public involvement to the way patient data is used. Get in touch to partner with us.
We focus on data routinely collected as part of a person's interactions with the health service, that might be used for purposes beyond individual care without explicit consent. This data is highly useful for research and planning purposes, by NHS bodies, academics
and commercial organisations, but its use can be controversial.
We provide objective information about how patient data is used and bring the views of patients and the public to policymakers and data holders, to ensure data is being managed and used in ways that are worthy of public trust.
You can find out about our history, governance, funding and supporters on this page, or contact us for more information.
Understanding Patient Data (UPD) is led by a small core team, based at the Wellcome Trust offices in London, UK."
PS I need to reread and check my dystopian novels soon!
HIFA profile: Richard Fitton is a retired family doctor - GP, British Medical Association. 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