Electronic Hospital and Medical Records

Personal medical records and records of hospital treatment are increasingly, if not uniformly born digital. By implication, those records should be retained through the life-time of the patient or in some instances longer as required for intergenerational study; and yet there is little evidence of the medical profession participating in the digital preservation community.

Group: Sensitive Data

Trend in 2021:

Consensus Decision

Added to List: 2017

Previous classification: Endangered

Trend in 2022:

Imminence of Action

Action is recommended within three years, detailed assessment within one year.

Significance of Loss

The loss of tools, data or services within this group would impact on many people and sectors.

Effort to Preserve

It would require a major effort to address losses in this group, possibly requiring the development of new preservation tools or techniques.

Examples

Medical scans; records of treatment and care plans; health advice and notifications;

‘Critically Endangered’ in the Presence of Aggravating Conditions

Loss of context; loss of authenticity or integrity; poor storage; lack of understanding; churn of staff; significant volumes of data; significant diversity of data; ill-informed records management; poorly developed transfer and integrity checking; poorly developed migration or normalizations specifications; longstanding protocols or procedures that apply unsuitable paper processes to digital materials; encryption

‘Vulnerable’ in the Presence of Good Practice

Well managed data infrastructure; preservation enabled at the point of creation; carefully managed authenticity; use of persistent identifiers; well managed records management processes; application of records management standards; recognition of preservation requirements at highest levels; strategic investment in digital preservation; preservation roadmap; participation in digital preservation community.

2021 Jury Review

This entry was first submitted in 2017 under ‘Medical and hospital records.’ At that time, there was limited capacity to address the topic. It was published as ‘of concern’ to revisit and review by the 2019 Jury and also independently received as a submission to the open nomination process under ‘Electronic hospital and medical records.’ The entry covers a broad range of material, and it may be useful in future years to split the entry into more discrete entries. Still, the 2021 Jury agreed to keep the current description and classification to draw attention to the scale of the digital preservation challenges which arise in hospitals and the medical profession.
Additionally, the same reasoning for greater risk in 2020 was used for 2021; there has been significant strain through the Covid pandemic, with resources stretched to meet an overwhelming demand and rigid, exacting protocols. In this environment, it is hard to avoid the sense that records are also now at greater risk. The Jury further commented that hospital records may be at greater risk than we think, where there may already be poor maintenance of records during their lifecycle, poor migration planning, etc.

Additional Comments

The 2022 BitList Taskforce recommends that the next 2023 Jury review brings in additional subject matter expertise for feedback and comment on any changes in risks relating to growth and volume of born digital records, increasing or peculiar budget strain conditions, changes pertaining to sensitivity and potential destruction linked to ransomware or conflicts.

Increasing sensitivity and awareness of data protection requirements could act inadvertently as a barrier to lifecycle data management. It is striking how little evidence is of the health technology companies participating in the global digital preservation community.

Case Studies or Examples:

• The São João University Hospital Center (SJUHC) Health Records Repository project. It offers a recent example of changing practices relating to the project’s implementation of a long-term digital preservation repository capable of ingesting, preserving and providing access to digital clinical information. As part of the Hospital’s digital transformation strategy, the Health Records Repository contributes promoting change in the management of daily medical records through the implementation of procedures for preparation, digitization and preservation of health records. The results of the last two years of activity of the Health Records Digital Repository reveal a higher efficiency in the access and reuse of clinical information in the context of healthcare. This initiative was nominated for a 2022 Digital Preservation Award. See: https://www.dpconline.org/events/digital-preservation-awards/dpa2022-digital-health-records

• The National Library of Scotland ‘The Archive of Tomorrow: Health Information and Misinformation in the UK Web Archive’ project as it relates to capture of health advice published on the web, online at https://www.nls.uk/about-us/working-with-others/archive-of-tomorrow/.

• The Conti cyber attack on Health Service Executive Ireland. See: Conti cyber attack on the HSE: Independent Post Incident Review, 03 December 2021 report, https://www.hse.ie/eng/services/publications/conti-cyber-attack-on-the-hse-full-report.pdf