BMJ: Patients’ access to medical records around the world (9) Both citizens and service providers benefit

16 August, 2024

Venus,

Portability *** 1 is akin to having an identity, a national insurance number or a passport. The portable health data can be wherever the patient or family is whenever the data is required by themselves or by services that tbey choose to engage with.

(*** 1 Paper, digital, cloud, on line; whatever).

Citizens go on a pilgrimage, work away from home, travel for work, migrate, become refugees or are displaced by internal strife. Citizens and service providers can access the portable record when the citizen travels or changes service providers. (Why waste time and money starting again when there are not enough doctors and nurses anyway to start again?)

Both citizens and service providers benefit from the access to the portable health data. *** 2

When I worked in casualty, I would have liked to see the tetanus status of patients with wounds. I would have liked to see their current medication, their medical summary, their recent results and tests and documents.

When I was doing child developmental milestones, I would have wish to see the child's birthweight, apgar score.

When doing orthopaedics, I would have liked to see a complete summary of medical history to assess suitability for operation and anaesthesia.

When doing infectious diseases I would have liked to see vaccination status and previous infectious diseases.

When dealing with cardiac and respiratory health, I would have wished to see previous eggs [ECGs], chest xrays, blood pressure and blood oxygen levels, peak flow and vital capacity readings.

When assessing abnormal kidney function in a newly admitted patient with a medical problem I would have liked to know the previous kidney function levels.

Primary; secondary and Tertiary care have failed to work together in the past because of a medical profession imposed code of confidentiality and lack of forethought on behalf of patients and alternate service providers.

Patients who have their own records, or who can give access rights to their distant or different service records, can overcome the confidentiality barrier that has been historically imposed to sharing.

Not all patients will have the will, ability or desire to handle their notes but many will and families and friends can act as proxies for those who cannot manage the task. (As happens for financial matters, shopping, transport etc).

There are professional and public educational requirements. However covid has rapidly moved culture and training along. A majority of patients have the NHS app, digital appointment booking, prescription ordering and access to records

**** 2 The majority of the UK public have always expected that their data is shared within the National Health Service. The technologies, apps, laws and understanding are developing rapidly. I attended a patient training session last week. Patients were showing other patients how to use their phones to engage with the NHS App. *** 3

I can forward the report "Culture change at Hadfield Medical Centre from our National Electronic Record Development and Implementation Pilot in 2001. Patients were an essential part of the design, consent and education parts of the project.

The management and culture change strategies are well described in the report.

We also used patients to teach other patients when we built our patient centred medical centre between 1994 and 1996.

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