The Digital Preservation Coalition (DPC) is hosting an open meeting to address some of the challenges surrounding healthcare data and healthcare archiving – and we would like to invite you to participate.
The DPC is an international charitable foundation which supports digital preservation, helping its members around the world to deliver resilient long-term access to digital content and services through community engagement, targeted advocacy work, training and workforce development, capacity building, good practice and standards, and through good management and governance. Our vision is a secure digital legacy.
Digital Healthcare Archival is an area in which very little work has been done, and ‘Electronic Hospital and Medical Records’ is listed as ‘Endangered’ on the DPC’s ‘Bit List’ of endangered unarchived data:
“and yet there is little evidence of the medical profession participating in the digital preservation community.”
I became aware of the DPC via a contact in the National Archives, and started a conversation with them to initiate some action on archival across digital health and technology. This is the first meeting in that initial action.
The meeting will take place online, on Thursday 20th November 2025, 11:30 - 13:00 via Zoom, and will aim to cover the following points:
Agenda:
Defining the Scope of the Healthcare Archives Challenge
Identify specific gaps in current healthcare archiving practices (e.g. absence of long-term storage, lack of metadata standards).
Categorise archival use-cases e.g. direct patient care (e.g. continuity of treatment); clinical and academic research; legal, regulatory, and historical record-keeping.
Evidence gathering:
Case studies or examples of archival failures or risks
Data on volume and types of unarchived healthcare records
Stakeholder feedback (clinicians, IT, archivists)
Exploration of Potential Solutions
Identifying and engaging stakeholders to understand barriers (technical, financial, legal, political)
Existing tools and frameworks that could be adapted or scaled
Assess feasibility of implementing archival standards across healthcare systems
Define success criteria for effective healthcare archiving
Thanks Marcus - we should discuss later this week at PHCSG. I’m in the middle of clearing my father’s house and preparing a talk and have come across all sorts of archive material from the late 1970’s when I was starting to dabble in what we now call clinical informatics. I strongly agree on preserving the digital data but wonder whether we also need to be thinking about preserving the computational assets as well? Given the ability these days to virtualise environments, I’m wondering about preserving some of the platforms that actually created these data in the first place. Bck up tapes (q.v.) exist and far from the times when we thought we would need specialised hardware preservation, perhaps a parallel process would be to instantiate working versions of Abies, VAMP, EMIS, Genesyst , Update, Hugerford, M-Tech, BMDS, CAP, Microtest, etc.
Hi @mike.bainbridge yes let’s chat about it later on this week - I remember conversations along these lines from at least 10 years ago, and as you say, the advent of containerisation and widespread virtualisation should mean it is possible to instantiate working versions of these older systems. Possibly even better would be to learn how to compile them to work in WebAssembly so they can be browsed right over the web just like a webpage. As an example, here’s Windows 95 in a browser with WebAssembly
If you have access to media with these programs on them then I suggest we could first start transferring the data over to modern disks. Then from there we can upload to a GitHub repo and see how feasible it is to get them going again. The wider Digital Preservation community is quite good at this stuff.
Many thanks - this could be both “interesting” and “challenging” - the systems ran on some unusual operating systems. Microsoft Xenix which migrated to Santa Cruz Organisation. Concurrent BOS also - I’ve got some QIC backup tapes of the SCO Xenix version. I thnk I also have the Archive brand drive and ISA controller card. I’ll do some digging. The company that produced this system is long gone (AAH Meditel) but obviously there may need to be permissions granted although you may know much better than I about archival issues. I think I also have the install disks and manuals for the 4GLDev system (Sculptor) which apparently is still going https://sculptor.co.uk/index.html - There is also the Wordprocessor ‘Lyrix’ which is what James Read / David Markwell and others used to create and edit the Read Codes - It was famous for its ‘dot stack underflow’ error just before crashing and losing everything. I still have a CTRL-S twitch when editing any document today. I definitely think there is both interest and purpose to this project so will start looking for items over the weekend on return from the BCS PHCSG meeting.
Thanks to all 35 or so of the people who attended today’s first meeting on Healthcare Archival. We had representatives from Trusts, Universities, Suppliers, and clinicians.
The plan will be to continue the conversation under the auspices of the Digital Preservation Coalition, develop some shared understanding, and map out the very large task ahead.
Some of the questions from today in my mind which we don’t yet have answers to:
Although there is no doubt that there is a lot of existing legal (UK/EU) and NHS guidance on retention, where is the single comprehensive source of truth for data retention rules, that is comprehensible and implementable by the technical people building the systems. Or better yet, machine-readable, executable rulesets.
What sort of retention rules should there be around “non-EHR” material - for example NHSmail and Teams conversations, given that we are now using these tools for important patient-level interactions like MDTs. The NHS M365 Data Retention periods outlined in this policy are astoundingly short. What if someone gets sued, how will they defend themselves?
Are the existing retention rules actually what patients want? A case was described of a patient with a cancer recurrence 35 years after treatment, and the original records had been deliberately deleted/destroyed (ie according to a retention schedule, not because of technical ‘data decay’) - this patient’s medical team wanted to know more detail about the treatment and her care is going to be impacted by a deletion policy. Do patients expect a lifelong lossless record? Should they expect that? (IMO: “yes”, and “yes”).
How do we ensure that there will be a historical record of “2000s medicine”? It feels as though we are actually going to leave a Dark Ages of lost information for generations to come. What will the historians of the future study?
Will it be possible, in the current climate of NHSE’s Impending Total Existence Failure, or in any other climate, to interest central NHS bodies in having an opinion on archival that isn’t - “great - we’ve been looking for a use for an FDP we once bought”. Will we be able to set national standards?
There is so much more to discuss. It’s a multi-decade project. The only thing I can say with certainty is that any person or organisation that thinks they have solved this has not fully understood the challenge.
Join the Digital Preservation Coalition - Apply for Supporter Status - Digital Preservation Coalition
Sadly there is no Individual, membership, and the costs of Full or Associate Membership are high such that it is only practical for suppliers who expect a return on that investment. Supporter status (not membership) can be at a reduced rate: “Sole traders, micro-agencies which operate on a charitable basis, and companies who offer purely open-source solutions, may apply for a discount which ensures they are able to participate equitably.”