Custodians of information: Patient and physician views on sharing medical records in the acute care setting

Why it matters

In the UK, in the acute inpatient setting, the only information that a patient receives about their medical care is verbal; patients cannot routinely access any part of their medical record. Although legislation states that patients should soon be able to have real-time access to their medical notes, patient, or doctor views on the impact this might have need further exploration.

Approach

We conducted a qualitative research study exploring and patient trust in the acute medical setting, specifically looking at patients’ and doctors’ views on how real-time patient access to medical records (paper or digital) might change experience or practice.

We conducted semi-structured interviews with 12 patients from a range of cultural backgrounds (who had been admitted to hospital with an acute medical problem) and 13 doctors from two hospitals. Patients were asked to talk about their recent admission and doctors were asked to reflect on recent cases and their wider experience of seeing patients.

What we found

Both patients and doctors saw openness as essential to the patient-doctor relationship; overall, patients and doctors supported increased sharing of written information. However, the purpose of the medical record – and the risks and benefits of sharing it – were disputed.

Concerns about the unintended consequences of sharing the medical record included disclosing uncertainty, changing what was written, and causing anxiety. When the idea of a summary record was raised, however, both doctor and patient participants were positive about its potential to improve patient care. Also known as a summary care record, these are an electronic record of important patient information, taken from GP medical records. Suggestions about what to include in a summary record included: the most likely diagnosis, differential diagnosis, treatments started and planned investigations.

Doctors said they would value the ability to maintain responsibility for curating what information was given to patients and when, in order to minimise the risk of anxiety and maximise understanding.

It may be that rather than sharing what we already have, we should redesign the patient clinical record, or create a summary record for patients and evaluate its impact on all users: patients and relatives, doctors, and nurses.