Endangered large

Personal medical records and records of hospital treatment are increasingly, if not uniformly born digital. By implication those records should be retained trough the life-time of the patient and perhaps 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: New Entry

Consensus Decision

Added to List: 2017

Last update: 2017

Previous category: Of Concern

Imminence of Action

Action is recommended within three years, detailed assessment within twelve months

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.

2019 Review

Medical and hospital records were introduced to the BitList in 2017 though at that time there was limited capacity to address the topic and it was simply published as ‘of concern’. It would have been reviewed in 2019 in any case but was independently received as a submission to the open nomination process. This topic remains large and ill defined. It is useful to draw attention to the scale of the digital preservation challenges which arise in hospitals and in the medical profession, but it would be useful in future years to split this entry into more discrete elements which would be more impactful.

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 there is of the health technology companies participating in the global digital preservation community.


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