Table 1.

Thematic analysis of free text answers from patients and physicians regarding their views on sharing all of the medical record, or a summary record

Positive themes from sharing the whole medical recordNegative themes from sharing the whole medical recordPositive themes for sharing a summary recordNegative themes for sharing a summary record
PatientEmpowerment:
‘I like to fully understand my condition, outlook and knowledge is power! I can plan, and hopefully take steps to help myself.’ Patient 27.
Right to information about oneself:
‘I think patients should know, and have a right to know, what procedures etc are being done and what medication etc they are on. I think keeping such information from them, (if they want it in particular) borders on unethical.’ Patient 30.
As a starting point for discussion:
‘Sometimes you might not understand previous questions of tests (why they were done) you could ask them to explain things you didn't realise before.’ Patient 44.
Transparency and aide-memoire:
‘Transparency can help build trust! Poor memory means I can't always remember my medical history, and some of it could be relevant.’ Patient 70.
Fear of not understanding it; high level of medical terminology in the notes which might diminish its usefulness:
‘Not sure I would understand half of it.’ Patient 46.
Easier to understand than medical records:
‘Easier for patient and relative to understand without being overwhelmed with a lot of information.’ Patient 10.
Don't need to take everything in at once on discussion:
‘This would allow time to study all the information at leisure.’ Patient 28.
Time consuming:
‘Too time consuming for a doctor – they're already overworked, they don't need heavier workloads.’ Patient 16.
DoctorPartnership with patients:
‘Genuinely working openly with patients as partners. May also help to lower complaints.’ Doctor 16.
Increase questions:
‘More questions will be produced but might make doctors more vigilant about what they write in the notes.’ Doctor 9.
Anxiety provoking:
‘For many, however, it may cause fear and anxiety and they drive harm.’ Doctor 7.
Lack of understanding:
‘Patients don't understand the way medical notes are written or have the knowledge and understanding to use the information they contain.’ Doctor 21.
Time consuming to respond to questions generated:
‘We would have to discuss all results whether relevant or not and spend more time explaining why certain “abnormal” results were deemed insignificant.’ Doctor 25.
Change what is written in the medical notes (loss of specificity and omission of thought processes including differential diagnosis):
‘Would radically alter way things recorded and some of the detail and much of medical terminology would either increase to cover things or reduce to lay language but reduce specificity by doing so … Less likely to write possible differential diagnoses that may induce anxiety eg cancer. Less likely to write phrases such as “pleasantly confused” which may be interpreted in a negative way.’ Doctor 1.
Aide-memoire for patients:
‘Although I would hope any clinician would explain those things verbally to the patient the likelihood of them retaining all of this information immediately is low.’ Doctor 2.
Platform for discussion:
‘A short summary sheet should not take significant time – it should be a tool to facilitate discussion. This does happen in some AMUs.’ Doctor 6.
Another job to do: ‘I think it would be good for patients/relatives but totally impractical as we just don’t have the time.’ Doctor 21.