Lessons Learned FHIR curation

Transfer of care and GP Connect

Core Curation team summary of feedback

presented by Dr Munish Jokhani

FHIR Curation Clinical Engagement Lead


  • Curation Feedback (link)
  • Overall curation process
  • Curation WebEx calls
  • Communication with the curation team
  • Benefits and transition to Business as Usual (BAU)
  • Next steps and AoB


Feedback form results = 19 respondents

  • N=19: 79% INTEROPen member; 95% on Ryver 26% Vendors
  • SME skills: 52% technical, 53% clinical or clinical informaticians, 16% terminology,


Overall curation process (What went well)

  • Clinicians, clinical informaticians, technical modellers , terminologists, clinical safety and vendors working together

  • It helped those who will be implementing the headings understand the rationale and detailed content. It also challenged the clinical requirements where they were insufficiently detailed, resulting in a more robust definition

  • I found the whole curation process was managed very efficiently and from the point at which I joined it pretty much stayed to the timetable. The DDM, where it was commented on, is a great way to see peoples views on the topic prior to the curation call and to confirm understanding.

  • Great collegiate atmosphere. Very constructive conversations. Collaborative consultation process. Passionate debate about the merits and current approaches. Participation was wide & enthusiastic.


Overall curation process (What could have been improved?)

  • Realistic timescales
  • Tangible and worked examples
  • Walk through profiles before review
  • Clarity on purpose: aiming to replicate or build for future?
  • When we got bogged down we should probably have agreed an action to address it
  • Documentation of final decisions
  • There was no clear definition for having the clinical safety team present


Design Decision Matrix (What could have been improved?)

  • I think the DDM can be a bit user unfriendly, I would prefer a table based on the FHIR Resource.
  • Confusions between actions, decisions, comments and questions
  • Separating out documenting design decisions as they relate to mapping Use Cases and/or existing Information Models to CareConnect Level 2 esource profiles and documenting decisions from a Level 2 CareConnect resource profile perspective.
  • There were fewer comments made on the DDM towards the end of the curation process and I wonder if this is because more people were using ryver to put their thoughts across and get feedback.


Recommendations for action

  • Visualise the standards being discussed to have a more concrete example
  • Interim :Add separate Columns for actions, decisions, questions and comments.
  • Discussion: FHIR profiles on left in the DDM and use cases are aligned
  • 2 spreadsheets DDM :One for use cases e.g. eDischarge : Level 3 decisions :Second spreadsheet for FHIR level 2
  • Long term :Tooling options review
  • Towards the end there were small presentations to help understanding - these could have been used more. It was easier to get a better understanding where slides were presented and test cases discussed rather than just looking at the DDM on the screen.
  • Clear questions/ goals for each call (for the various stakeholders) to focus the discussion
  • Process review meeting between PRSB and NHS D to discuss how we engage the wider PRSB where clinical queries are raised and how these are fed back into the curation process.


Webex Vs Face to face

  • Although it's expensive, face-to-face is more productive.
  • Face to Face can be better but in my opinion not a viable option. WebEx should work ok.
  • Face to face is better, but it's also expensive, so on balance it was probably OK
  • The use of a WebEx and a single face-to-face was good.
  • Use of the putting hands up function it improved the calls and was more manageable for the chair.
  • In retrospect we might have been better to have a f2f for Problem lists and ?? Negation/empty list issues. Composition and condition. Kick off meeting.



  • Well
    • Regular scheduled calls keep up momentum. A published set of dates for discussion profiles helped provide clarity and allow future planning
    • The preparation was well thought through
  • Improved
    • Engagement with those outside the core curation team
    • Need to find ways for easier async communications - spreadsheet does not work
  • Recommendations
    • Improve comms and engagement with those outside the core team, give them up to month to reply. Include call outs on social media and any other comms channel so interest groups and stakeholders are aware.
    • Question use of RYVER we have too many of these types of forums/Tooling



  • Essential. No one organisation could do it with any hope of a workable outcome.
  • The curation process will produce a FHIR profile that is fit for purpose as it has had both clinical and technical input. By having the vendor input it will produce something that is achievable and usable in the real world of clinical practice. It's really positive to see market competitors working together during the curation.
  • One clear benefit is a learning on all sides - e.g. where sometimes the PRSB guidance isn't clear, we ask for clarity and at other times when FHIR's resources have to be extended to meet clinical needs. The end result are interoperability artefacts more fit for purpose.
  • Consistency in the use of FHIR profiles (leading to better interoperability),Better profiles with consistent value sets.


Should FHIR curation become a BAU function?

  • Yes, vital to ensure they best represent the various clinical settings

  • I do believe it should but needs the process to be defined and agreed. With quality criteria about what is good curation

  • I think it would be useful ...but perhaps could be less frequent

  • The current timelines were ambitious to start with and would have never covered everything that was needed - so an on-going effort is needed.

  • During the process, we have come across other initiatives/programmes within NHS (e.g. Digital Child Health, Reasonable Adjustment, etc) that been looking at FHIR but did not quite approach it from the broader perspective the FHIR curation process does

  • Yes as there may be emergent issues as systems mature, especially secondary care systems which are gradually being implemented across more organisations.








Any other comments

  • This is completely the correct direction of travel. The process needs to be slicker and less labour-intensive for all concerned and set in an agile process which expects continual requests for extension and update. This will require tooling.
  • We need to have a balance between technical and clinical curation going forward.
  • Kudos to the team behind the team as it couldn't have been easy.
  • It would be good to review the process end to end including the development of the professional standards to ensure we are doing this as effectively as possible.
  • The process is quite intense and at some points was difficult to fit in around the day job. However, i found it exciting to see the direction of travel for care records and the improvements to the system that this curation process will eventually bring.


Next steps Summary and AoB

  • Revised process : Technical vs Clinical
  • Revised DDM/Review tooling requirements
  • Review frequency of curation calls and more face to face for complex issues and kick off
  • Build maintenance in the process
  • More prep by core team including presentations and clear objectives
  • Definition of role of clinical safety
  • Review use of Ryver long term(Paid service now)
  • Develop proposal to transition to BAU with realistic timescales with the recommendations as above.


Q+A - discussion points to record


Thanks to all and Core team

  • Amir Mehrkar
  • Munish Jokhani
  • Dave Barnet
  • Jennifer Ellison
  • Jan Hoogewerf
  • Ian Mcnicoll
  • Colin Brown
  • Andrew Perry
  • Peter Salisbury
  • Stuart Abbott
  • Jeremy Rogers
  • Bill Lush
  • Zac Bickhan
  • Sandy Garrity
LessonsLearnedFHIRCurationTOCGPConnectVersion0.1.pptx - Google Slides