SHCR Summit 2025: Reflections on the IPS Learnathon
Recently, I took part in a Shared Care Record Summit Learnathon, which focused on the International Patient Summary (IPS). It was encouraging to see all participants successfully generate and consume IPS documents using their care record systems. As with most interoperability hackathons/learnathons, the headline takeaway was, perhaps unsurprisingly: “Yes, this is technically possible.”
TL;DR
✅ IPS is technically feasible — but success depends on workflow and governance, not just standards.
✅ Patient-mediated sharing adds flexibility but needs strong security and usability.
✅ Federated IPS helps avoid multiple versions but raises questions about duplicate data and sources of truth.
✅ Clear guidance is needed on what IPS should include, especially around recency and patient input.
✅ Standards like Smart Health Links could extend sharing beyond IPS.
✅ The real challenge: define why, when, and how to share — not just how to build it.
Why IPS Matters
Originally designed for unplanned care across borders, the IPS allows patients to share a snapshot of their health record with providers or healthcare settings they have never visited before. This can save time, reduce transcription errors, and improve safety — especially when visiting a clinic abroad or a healthcare setting for the first time. Our demonstration was centred around this idea: a fictitious patient sharing their IPS with a care provider when visiting a new healthcare setting.
Where Does IPS Come From?
If a patient sees multiple providers, each may hold different parts of their record. A federated IPS that is assembled on-the-fly from multiple sources helps unify this. But it raises questions: which data is authoritative? How do we de-duplicate data?
Sharing and Access
Patient-mediated sharing is powerful but assumes the patient is well enough to initiate it. Nominees and “break the glass” workflows help, but discoverability is key. Could smartphone medical IDs include IPS pointers or permanent IPS Smart Health Links? Could services like the NHS National Record Locator scale globally and provide the backbone for a worldwide IPS registry? Could patient-mediated sharing even become a feature of the NHS App?
Integration Approaches
Most of the demonstrations imported an IPS into an existing patient record within a Shared Care System. While this showed successful data merging, it raises a question: why import a summary into a system that already provides one? Integrations were typically triggered by FHIR query/retrieve or create interactions. Many systems perhaps expect direct retrieval, but protocols like Smart Health Links enable patients to share data securely on their own terms. Should future approaches, and indeed future IPS hackathons, prioritise patient-driven sharing over system-to-system exchange?
What Should IPS Include?
The IPS standard is flexible, but national implementations need clear guidance. Should data be filtered by recency? What if older procedures are still clinically relevant? Patients contributing to their IPS could also add valuable context (e.g. About Me).
Beyond IPS
Smart Health Links could let patients share more than summaries — preferences (e.g. End Of Life), care plans, discharge notes. With the right controls, patients become active participants in care.
Final Thoughts
The technology exists, and FHIR-based integrations are a well-trodden path. The real challenge lies in defining workflows, governance, and user experience. The original concept of IPS remains promising — but without clarity, it, perhaps, risks becoming just another silo.
