Thoughts about patient records and a need for a sensitive management of sensitive data.
There may be a useful analogy between access to personal health records, and access to people's homes?
A workman needs immediate or forward consent for access to a person's house in order to start and complete work.
The medical professional is automatically seeking a patient's consent when taking a medicsl history, the patient decides in real time whether to release the their history to the health professional that is requesting their as they consult.
But is the patient consenting to this history be available to any other health professional in the future?
For national Single Patient Records (or unified records as some would have them called) I suggest that at a consultation patients should be allowed to ask for some very specific personal health data (pregnancies, STDs etc) to be recorded once, (or not at all), but not to be accessible again in the future without their consent, (except for situations in which national law, litigation, complaints handling, necessitated examination of the very sensitive data.) This would allow patients to share very sensitive personal data which might otherwise harm themselves especially or others if shared inappropriately.
How could patients be assured of the appropriate processing of the data that they had asked to blocked from further access:
A system that automatically notified patients about access to the sensitive data that had been sealed could be implemented, satisfying the requirements of information governance and of medical ethics - beneficence, non-maleficence, autonomy and justice.
Sealed data could still be accessed, for reasons of national security, crime detection, complaint litigation and medical defence etc, would provide a string level of information governance.
Richard
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