Why use Open Standards for Healthcare Records

So you wanna procure some software? A firms oft stated goal is to maximise profit. The lesser spoken goal is to control its environment, to reduce risk, to persist (Galbraith). Your needs are considered in so far as they can be profitably engaged. Profit is deployed to eliminate uncertainty.

Yes, some people within firms really do want to deliver value to customers. They are typically deployed towards the front. You get to talk to them. Their empathy weaponised by nothing more malevolent than individuals preferring roles that resonate with them. Relationships with these specific trustworthy individuals only gets you so far. They leave. Or they stay while the firm does things they disagree with, but lack the control to prevent. (Co-operatives help here, an open standard for corporate behaviour.)

Once you sign the contract your needs are a cost to be managed. In the case of Electronic Patient Record systems used in the NHS, this becomes more obvious towards the end of a 10 year contract cycle when the clamour from the actual users to improve the app tips the threshold and a new system is courted. The decade of existing data must be migrated. Per the terms of the contact a file is handed over. It’s multiple spreadsheets with no data linking. It both fulfils the contract obligation and is unusable.

Yet another difficult choice falls on the Trust. Do we pay to do the one off complicated task of trying to salvage meaning from the export? Do we give up and pay to keep the old system available as a legacy store? No. Neither. There is no more money for this. The migration does not happen. The history is lost but the warnings were there. The 10 year old existing system has no records from before it was launched either. The cycle repeats.

Bombastic? Yes. Based on multiple actual events? Also yes.

You are never more powerful than the moment before you sign the contract. Take a moment. Wield the curious power of procurement. Per Levin, (or a ships mast to Odysseus, for the Greeking Out crew) look for firms that, explicitly constrain their future behaviour, by demonstrably committing to building on open standards.

Open standards offer a place to convert the energy of competition into useful collaboration. They are where difficult conversations about how things should work, happen. Haggling and consensus building. They can feel like a burden to the participants. They should! The alternative is each product imposes its incompatible opinions directly on the users rather than working through the trade-offs with competitors first.

At the very least the you want every contact point between a public entity like the NHS and the private market of software providers to be extremely well defined. We may tolerate that the firms take the profits but the public must claim and share the intangible value it pays for. Do not give away both.

All data generated from a public investment should be held safely in public benefit, in perpetuity. Before we even get to secondary uses, records about us, co-created with us, must remain legible for us, regardless of which tech company currently holds the contract. Heck, all software paid for by public money should be open source by default, but we’re on a journey.

Our physical paper medical records were slow to search and difficult to share but we didn’t periodically bin them. We now have the worst of both worlds. Our new digital systems are still slow to search and without a shared standard for what the “not paper” format actually is, they can be impossible to share.

At it’s most dysfunctional we’ve swapped a Lloyd George envelope of notes and sharing at the speed of the postal system, for clinicians remotely operating other clinicians over a weekly MS Teams call to plug numbers into incompatible systems to bridge gaps in trust at unintentional system boundaries.

An open standard for medical records gives us foothold. A place to build from. It is hard to get them off the ground, and good ones, like openEHR and FHIR should be cherished and supported. That means showing up. Visibly participating and financially sponsoring, no strings attached.

As a “rules of engagement that allow diverse and heterogeneous actors to interact constructively over prolonged timespans” (Ferraro et al.), the open standards process offers a path forwards, a “robust action” to a complex, uncertain problem, rather than a prisoners dilemma to overcome. We do not have to wait for everyone to be convinced. Each system built on open standards by people willing to negotiate and trade some implementation freedom for coherent, reusable, interoperable output is a win.