# Patients (and Carers) Who Code **Category:** [open forum](https://openhealthhub.org/c/open-forum/9) **Created:** 2026-04-25 06:22 UTC **Views:** 39 **Replies:** 6 **URL:** https://openhealthhub.org/t/patients-and-carers-who-code/2975 --- ## Post #1 by @mayfield.g.kev **Is this another user group?** For instance, while exploring pharmacogenomics, I came across tests---such as CYP2D6---that are not currently funded by the NHS (see: [https://www.genomicseducation.hee.nhs.uk/genotes/knowledge-hub/cyp2d6/](https://www.genomicseducation.hee.nhs.uk/genotes/knowledge-hub/cyp2d6/)). It seems likely that some patients are paying for these privately. Even if funding were available, there's still a good chance patients would be responsible for sharing results from labs with clinicians. This issue isn't limited to genomics. During my dad's bowel cancer care, we often found ourselves bringing reports we'd obtained to different clinicians (outside of GP settings). In many cases, the technical standards and data infrastructure already exist, but their practical use---even when relatively straightforward---becomes unnecessarily complicated. More broadly, the system often struggles to break workflows into modular components or to approach problems from a higher-level, system-wide perspective. As a result, solutions tend to be designed for specific clinician groups rather than for clinicians collectively. Image is from https://www.linkedin.com/feed/update/urn:li:activity:7453682742707511296/ ![6b6bea83-933a-4e27-89a5-317e7cb5edec|690x460](upload://jAmwsFCN06kiwl1PkRS483Rqnkp.jpeg) --- ## Post #2 by @pacharanero Definitely - there are numerous patient groups which have moved into writing code to help manage their conditions better, and the advent of AI agentic coding is going to democratise that. I am aware that the Clinicians Who Code conference is a bit excluding, but I did want to support that Clinician coding community, which I've been part of for a decade and a half now. But I would be very much up for a much more inclusive event in the future, something that teaches and shares Health Hacking techniques and knowledge. And of course if anyone wants me to create a Patients/Carers/Parents Who Code category here on OHH I'd be very happy to help. --- ## Post #3 by @mayfield.g.kev I think the core problem is that the NHS remains too paternalistic. One of the most visible consequences for patients and families is that practitioners rarely share records, except in limited circumstances. This issue comes up repeatedly. Developers---including NHS developers, clinical informaticians, and practitioners who code---can see relatively straightforward solutions, so the barrier isn't primarily technical. Even on moderately complex care pathways, it's common to encounter practitioners who "don't know what they don't know," and therefore rely on patients, families, or carers to bridge information gaps. In practice, the workaround is often to retain copies of correspondence as printed documents or electronic images. In my dad's case: * A family member assumed the NHS automatically shared information, which led to key details being omitted or unintentionally altered. * The ReSPECT form wasn't available in the home, so other providers---including another secondary care trust---were unaware of his primary condition. I suspect many others have experienced similar issues. From a carer's perspective---particularly with an NHS technical background---this is deeply frustrating. We've had workable solutions for years, even decades. They may be simple, but they are effective across many care pathways. In my family, several carers also had NHS experience and knew how to navigate communication gaps. Frustratingly, the available technical solutions and the communication challenges within the NHS are often closely aligned. For example, with ReSPECT: a family member's description of the process maps naturally to an off-the-shelf technical solution, whereas the NHS approach tends to diverge into something more complex, often driven by the needs of a single care setting or individual practitioner. There are already two internationally recognised approaches that address this: **International Patient Summary (IPS):** [https://international-patient-summary.net/](https://international-patient-summary.net/) This enables patients to share key clinical information---typically as PDFs or structured documents---with practitioners. It requires minimal infrastructure and works across organisational and national boundaries (e.g. a UK patient needing care in Scotland or abroad). From a health informatics perspective, this is a document-based approach (e.g. CDA, FHIR Documents, openEHR compositions). **International Patient Access (IPA):** [https://ipa.hl7.org/](https://ipa.hl7.org/) This focuses on patient-held applications, giving individuals API-based access to their clinical records. It also supports document sharing (such as PDFs), which is currently one of its most practical and widely used features. --- ## Post #4 by @pacharanero Absolutely agree @mayfield.g.kev - I recognise these data flow disasters from family NHS care and from seeing stupid situations in clinical practice. Paternalism starts to fall apart when the metaphorical 'father' is nearly 80 and is actually the *cause* of much of the problem. Paternalistic care is never good but in current times its incredibly harmful. While individual clinicians are clearly doing their best, they are working within a dangerously incompetent system. Also many practitioners within the NHS react very badly when there is any perceived criticism of the data available or the care that's being given. They refuse to accept that the NHS' information systems don't work, and blame family for 'interfering'. ### Organisation-centricity and Databases This is something I've thought about a lot. **Organisations** buy a **database** (some EHR/EPR, but all have a database). They think this solves all **their** problems. They (naturally) put all **their** data in it, for all **their** patients. This has some knock-on effects: 1. It is impossible to extract out just **one** patient's record from the jumble. 2. Customisation of the EHR/EMR product means data from one organisation's database cannot be (easily) joined with data from another, even if for the same patient. 3. **Patient data** becomes **linked to organisation data** that has no meaning or an ambiguous meaning outside of that organisation ("clinic_room: 5", "clinician_id: 42" 4. One complete 'logical' patient record is strewn across numerous physical organisation-centric systems whose schemata are irreconcilable. Everyone involved in these systems thinks that databases are obviously the state of the art and doesn't even want to consider any other option. My conclusion: **Databases are harmful.** We should be using files instead. This is clearly what IPS have concluded as well, if they are saying PDFs are better than nothing. I've been working this up as a project called [GitEHR](https://gitehr.org/) (git-tracked, versioned, file-based EHR), and it will implement IPS. --- ## Post #5 by @mayfield.g.kev [quote="pacharanero, post:4, topic:2975"] Absolutely agree @mayfield.g.kev - I recognise these data flow disasters from family NHS care and from seeing stupid situations in clinical practice. [/quote] An OCD comment :slight_smile: It's workflow communication for many practitioners e.g. patient has been admitted or discharged, which can trigger potentially a number of actions. e.g. *My dad had a fall (frailty due to his cancer) involving ambulatory care. Manual notifications were sent out to around 4 providers to trigger action in a frailty pathway and keep all providers informed*. Data is associated with that but the primary aim is workflow, and technically this is 'patient admitted' or 'patient discharged' events, not populating databases. Understand for GPs + Clinical Informatics it is a data flow/data pipeline and the GP version of the above was probably a discharge letter (i.e. data or pdf if electronic else a letter in the post) --- ## Post #6 by @mayfield.g.kev [quote="pacharanero, post:4, topic:2975"] This is clearly what IPS have concluded as well, if they are saying PDFs are better than nothing. [/quote] The PDF part was from me. A Y2K solution is better than nothing. --- ## Post #7 by @stephen [quote="pacharanero, post:2, topic:2975"] And of course if anyone wants me to create a Patients/Carers/Parents Who Code category here on OHH I’d be very happy to help. [/quote] Are patients/carers/parents doing this in the UK? I'm aware of the diabetes working in this space via Scott Hanselman https://www.hanselman.com/blog/category/diabetes - but I'm not aware of individuals or groups in the UK? --- **Canonical:** https://openhealthhub.org/t/patients-and-carers-who-code/2975 **Original content:** https://openhealthhub.org/t/patients-and-carers-who-code/2975