Patients’ access to their electronic record: offer patients access as soon as you can

SAFETY

The Francis report makes specific reference to RA,4 suggesting that poor care would have been more difficult to continue if patients and families had had real time access to their records.

Accounts by patients using RA describe sharing their GP records with clinicians in secondary care in the UK and abroad.5 This must make care safer: ‘Access to my personal records is an excellent benefit both to myself and other medical specialists — in fact, information/ test results I have obtained from my records have actually helped other consultants with their diagnosis and subsequent treatment.’(Patient)2 ‘I have a chronic disease and feel a real partner in the management of my health. Whether I am at home or abroad I can monitor information and share it with any other health professional involved in my care. I would be lost without it now!’(Patient)2

Sometimes it is only the individual patient who can identify an error in the record: improving the accuracy of the record may be one of the key benefits of RA.

PATIENT INVOLVEMENT

We can now see, as experience and research continues, that RA affects not only the patient’s ability to look after themselves, but also their relationships with clinicians and with their own illnesses and comorbidities.

CONVENIENCE

Although there are natural concerns that RA will result in more work for primary care, current evidence suggests that RA makes life easier in many respects for practices and patients. As yet unpublished evidence (C Fitton, R Fitton, A Hannan, et al, unpublished data, 2013) suggests that if 30% of patients used RA at least twice a year, a 10 000-patient practice would save 2520 doctor appointments, 1110 nurse appointments, 420 healthcare assistant appointments and 7950 telephone calls. Assuming a consultation rate of 5.3% annually11 that equates to a release of 11.3% of appointments per year, with significant resource savings for patients and the environment: ‘I … recently sustained an injury which required several hospital appointments under two consultants at two hospitals. Being able to access my medical records and letters of referral was an enormous help, allowing me to track my progress through the health system without troubling the surgery.’(Patient)2

These self-reported data are very similar to US data.12 New, more objective US data, however, suggest RA takes up more time.13 This study compares patients who used RA combined with e-messaging services with those who did not use either. It showed that rates of office visits, telephone encounters, after-hours clinic visits, emergency department encounters, and hospitalisations increased in those with RA and e-messaging.

It is not clear whether it was the RA or the e-messaging component which made the difference.

RESPONDING TO OBJECTIONS

The General Practitioners Committee has concerns about RA. Some have already been mentioned.

ETHICAL ARGUMENTS

Apart from all these practicalities we need to consider that we have a right to our own data. We should not have to ask for it from the NHS, seeking permission to see our own information. We should have access to it and use it as we see fit. It is an issue of human rights. The NHS has a moral duty to share it with the patient as and when we want it.

The small issue of power is also relevant. Shifting paternalism/maternalism includes sharing the information that helps maintain the unequal power balance between patient and clinician and patient and the system. Evidence shows that record access does go a small way to shifting that.

And finally, the concept of ‘power balance’ suggests that this is a zero-sum game: there is a limited amount of power and if one person has more the other must, as a consequence, have less. Experience suggests that this is not the case. Power can expand to include patient and clinician: both can be empowered and gain through sharing information.

CONCLUSION

Record access with simple precautions is safe and convenient for patients. Most of the significant risks can be mitigated, but we shall need to find technical and organisational responses to minimise the dangers of coercion. When used wisely it is likely to increase capacity in primary care.