A systematic review of patient access to medical records in the acute setting: practicalities, perspectives and ethical consequences

Abstract

Background: Internationally, patient access to notes is increasing. This has been driven by respect for patient autonomy, often recognised as a primary tenet of medical ethics: patients should be able to access their records to be fully engaged with their care. While research has been conducted on the impact of patient access to outpatient and primary care records and to patient portals, there is no such review looking at access to hospital medical records in real time, nor an ethical analysis of the issues involved in such a change in process. Methods: This study employed a systematic review framework in two stems, to integrate literature identified from two searches: Medline, CINAHL and Scopus databases were conducted, (for (1) hospitalised patients, patient access to records and its effects on communication and trust within the doctor-patient relationship; and (2) patient access to medical records and the ethical implications identified). The qualitative and quantitative results of both searches were integrated and critically analysed. Results: 3954 empirical and 4929 ethical studies were identified; 18 papers representing 16 studies were identified for review (12 empirical and 6 ethical). The review reveals a consensus that our current approach to giving information to patientsalmost exclusively verballyis insufficient; that patient access to notes is a welcome next step for patient-centred care, but that simply allowing full access, without explanation or summary, is also insufficient. Several ethical implications need to be considered: increased information could improve patient trust and knowledge but might transfer an (unwelcome) sense of responsibility to patients; doctors and patients have conflicting views on how much information should be shared and when; sharing written information might increase the already significant disparity in access to health care, and have unforeseen opportunity costs. The impact on medical practice of sharing notes in real time will also need to be evaluated. Conclusions: The review presents encouraging data to support patient access to medical notes. However, sharing information is a critical part of clinical practice; changing how it is done could have significant empirical and ethical impacts; any changes should be carefully evaluated.

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Health data research on sudden cardiac arrest: perspectives of survivors and their next-of-kin

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Participants’ views and experiences from setting up a shared patient portal for primary and specialist health services- a qualitative study

“…The majority of studies on patient portals are from the US, which means that there is less knowledge on patient portals in a European context [ 12 – 14 ]. Most studies are conducted within one healthcare domain [ 15 , 16 ] or on patient portals for specific conditions [ 17 , 18 ]. Although eHealth tools have been put forward as central for improving integrated care [ 19 , 20 ] few studies have focused on the processes of establishing a patient portal across healthcare domains [ 21 ].…”