Patient access to medical records

The NHS Constitution unequivocally states that patients “have the right of access to [their] own health records.” Lord Darzi was more specific: “All patients will have the right to see the information held about them, including diagnostic tests.” The recent coalition White Paper reiterated the broader principle that: “Shared decision making will become the norm: No decision about me without me.”

These policy commitments, though unequivocal, are not detailed, and, for now, patient access to records is the exception rather than the rule. In particular, diagnostic test requests and results are brokered by clinicians. For almost all patients, independent access to test results is effectively impossible.

The Department of Health convened a conference to consult on the implementation of patient access to diagnostic test results. Experience from the UK and the United States suggested that patient access to diagnostic tests and results can improve clinical effectiveness and reduce costs. Direct access to results empowers the patient, removing their dependence on the clinician. However, despite the evidence from early adopters, and enthusiasm from patient groups, medical opinion was cautious.

At the conference, Jackie Stedman, a diabetes nurse from Salford, reported how diabetic care was improved when patients gained access to their test results before the consultation, rather than being given the result at the start of the appointment. She finds that patients are far more responsive to the lifestyle advice given, and in many cases arrive with a set of priority actions to discuss. Their agenda, she says, is the same as the nurse’s.

Direct access to diagnostic testing shortens the pathway, potentially reducing cost. Regular testing is a fact of life for many patients with long term conditions. Where they can access a result for themselves, one contact with their provider is saved; there is an opportunity for a further saving when patients can request the test themselves.

Professor Neil Turner of Edinburgh University reported experience with Renal Patient View, which allows patients to access their records on the nephrology departmental system. Patient evaluation was strongly positive.

The UK experience, though positive, remains small scale and local, with the impetus coming largely from clinicians.  No commissioner has yet implemented patient access to results for its whole population. However, US commissioners have carried out such large scale implementations. Kaiser Permanente, for example, releases 5.2 million test results online every month, of which 1.7 million are viewed by patients.

Positive experience

Even at scale, the experience is positive.  Dr Kate Christensen, Medical Director of kp.org, Kaiser Permanente’s online portal, reported that “no patients were harmed, liability was reduced, and both patient contact and overall workload in physician offices fell.”

In the UK, however, commissioners do not so far appear to have woken up to the significant cost and quality benefits of direct patient access.

The reasons are unlikely to be technical. EMIS, the largest GP systems provider, has been offering patient access to GP records for some time, and its competitors would be likely to follow suit if there was significant commissioning interest.  

A more likely reason is widespread concern among doctors about the consequences of accessing diagnostic results. Access to routine test results for self-managing patients with long-term conditions is no longer controversial. But the consultation suggested that medical opinion is far more cautious about situations where a diagnosis is not yet established. And despite the political enthusiasm for the idea, demand from patients does not seem high. The conference heard from a practice that has been offering patients access to their records for three years, using the EMIS system, and found that only 750 patients signed up from a total list of 12,000. Patient advocates at the conference were strongly in favour, however.

Cultural change

Implementation of the policy will clearly require a programme of clinical engagement and patient education. It represents a significant cultural change for the UK. But Dr Christensen suggests that it is worth the effort:

“Kaiser’s policy of transparency was based on ethical grounds, that the patient has a right to his or her record. Although some doctors were resistant to the idea, with extensive discussion and strong support from the clinical leadership, Kaiser now automatically releases almost all results (some are released immediately, some with a time delay).”  Once clinicians experienced the reductions in workload and the improved contact with patients, attitudes shifted further.

There are signs that medical opinion in the UK is shifting, too, as a recent paper from the Royal College of Pathologists shows.

Despite the cultural challenges, the evidence for quality and cost benefits argues strongly for more rapid progress towards the implementation of this aspect of Government policy.