Why it matters
Allowing patients to access their medical records is seen as a way of encouraging them to be more engaged with their care and more informed. The UK government mandated that patients should be able to readily access their electronic medical record by 2018, but there have been logistical problems with fulfilling this. Internationally, patients are more readily able to access their medical notes. The use of patient ‘portals’ – an electronic route to targeted parts of the medical record – has recently become more common.
Research has been done on the impact of patient access to outpatient and primary care records, and to patient portals. However, there is a lack of research on access to hospital medical records in real time, and of ethical analysis of the issues involved in this and any unintended consequences.
Approach
Focusing on adult access to notes in the medical acute care setting, we reviewed literature relating to patient access and contribution to medical records, and considered the ethical issues raised by this proposed change in practice.
Our review set out to answer two questions:
- What studies have there been of sharing records with medical patients in hospitals, and what is known about the impact on trust and communication between patients and doctors?
- What are the ethical issues associated with sharing records with medical patients?
What we found
Our literature search found 18 relevant papers, representing 16 studies. Four main themes emerged: impact on patient care; conflicts between patient and physician perspective; divergent views on doctor and patient roles, and cultural differences and societal risks.
The review of these papers revealed that the current approach to giving information to patients almost exclusively verbally is insufficient, and that access to notes is a welcome next step for patient-centred care. However, simply providing full access, without explanation or summary, is not enough. We found several ethical implications that need to be considered:
- Increased information could improve patient trust and knowledge but might transfer an (often unwelcome) sense of responsibility to patients – for example the responsibility to check for errors, and to deal with uncertainty and to worry about results.
- Doctors and patients have conflicting views on how much information should be shared and when, in particular in relation to test results.
- Sharing written information might increase the already significant disparity in access to healthcare: for example it could divert resources to those who can read and understand their medical notes and wish to discuss them further.
Sharing notes can also have an impact on trust and medical practice:
- Patients’ access to their own records might alter doctors’ behaviours to be more trustworthy; they may, for example, control their language and ensure better verbal communication to avoid misunderstanding of what is written.
- There needs to be consideration of the impact that sharing notes would have on medical practice. Medical records are not only a patient narrative, but a working medical document. If doctors do not reflect concerns clearly in the notes for fear of worrying the patient, there could be negative implications for the patient’s care and for the training of future doctors. Giving patients increased information may take away their choice to defer responsibility – and the associated emotional work and worry – to their physician. Care also needs to be taken around the potential worsening of inequalities; access to records might disproportionately benefit more advantaged groups, for example.
Sharing information is a critical part of clinical practice and changing how it is done could have significant practical and ethical impacts. Our review highlights what those potential impacts might be.
