Endangered large

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

Trend towards greater risk

Previous classification: Endangered

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 Review

This entry was first submitted in 2017 under ‘Medical and hospital records’ but at that time there was limited capacity to address the topic and it was simply published as ‘of concern’ to revisit and review by the 2019 Jury. It was 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 may be useful in future years to split the entry into more discrete entries, but the 2021 Jury agreed to keep the description and classification as is to draw attention to the scale of the digital preservation challenges which arise in hospitals and in the medical profession.

Additionally, the same reasoning for an increased trend towards greater risk in 2020 was used for 2021; there have been placed under 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 2021 Jury further commented that hospital records are at greater risk than we think, where there may already be poor maintenance of records during their life-cycle, poor migration planning, etc.

Additional Jury Comments

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.


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