30 years of research, design and implementation seems almost irrelevant to when considering the pace at which covid was responded to but the principles are the same, perhaps requiring sesign, development, ethically approved experiment, then technical, public, government, media, regulatory and professional acceptance and buy in.
I have been well supported by 5 out of six MPs and am in correspondence withand in attendace at the surgery of my local MP on two digital health issues.
I reckon iterates [it takes] 12 to 18 months to successfully help an MP to "understand" your case and about another two or three to get the all party committees to understand.
It was through the House of Commons and then Health Minister Alan Johnson thaycwe helped persuade the MOH, Liam Donaldson, to write to the DG of the WHO asking the WHO to include patient access to records in the WHO ec directive.
Microsoft came to our practice as and before they launched their Healthvault. Healthvault was what was needed to allow patients to process their own health using their own records. As one IT project lead said of our mission in 2001 "you are so far down the road that no one can see you."
We wrote a report for the house of lords and Richmond Group of Charities on the political, regulatory, clinical, media, research and public engagement history of patient access to records in 2018.
I have pasted an edited version which is probably too long [*] but it shows the interdependence of all of the above agencies.
I can share the complete report with anyone who is interested.
*Digital versus paper data*
The General Practice records in the United Kingdom were traditionally paper-based and importantly retained cradle to grave. One very commonly encountered way of organising a patient's entire medical record was to place it in a buff-coloured, stiff card, 5 by 7 inch wallet known as a Lloyd-George Envelope. The records were linked to a national register of British citizens held by Somerset House and managed at Exeter.
*From cradle to grave and after? *
Each record was lifelong, beginning at the birth of each patient or of their registration with Somerset House or with the health insurance scheme. All correspondence and events (including birth, maternity, contraception, vaccinations, infancy, breast and bowel and cervix screening, disease, death and dying)relating to the patient's health care under the health insurance and later to their NHS care were to be copied to the record in paper hard copy making it a life long record of the patient's medical and preventative history.
At that time most practices only recorded incident by incident notes with no summary and in handwriting and mnemonics that could not be interpreted except by the author.
The senior partner at West Gorton Medical Centre 1 1984 explained Richard - patients in the inner city have less choiceses and enjoy immediate gratification over deferred gratificationâ How to addres these issues? Could the patient accessed record with results, text and documents become a source of education for the patient?
*Over the next twenty years the press - particularly the editor of The Glossop Chronicle were immensely helpful in supporting the different approach to health.*
*November 1992 Dr Fitton applied to North Derbyshire Family Health service Authority take over a single handed practice in Hadfield, Glossop to utilise patients, information and building to improve health and to allow patients to have copies of and to access their records*
*October 1995 A paper was written with the patients on 'A patient-centred medical centre' a radical rethink about patiient care:*
*Could an interoperable personal health record controlled by the patient and as such not subject to the Data Protection Act help communication?*
[...]
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
[*Thanks Richard, yes I have redacted this for length - All: please contact Richard to obtain full copy]
