UKKA & PKB Meeting 2023-07-06

Agenda

Open

Slides

Notes / Questions

Open

PKB Invite By SMS

• GS: What if the mobile number is for the Parent/Carer not Patient

  • PKB: If it is the Carer’s Number it will just result in them signing up to PKB as themselves. There is no IG risk.

• GS: If a patient accepts the Invite how does this fit in with our workflow?

Survey Prompt By SMS

• GS: Do we need to be capturing the mobile number in the UKRDC feed? It is part of the schema as it was part of the PV XML but I’ve not made much of it in the new RDA feeds as I think there might be IG issues, especially if the contact details are for a third party.

Survey via PKB

• PKB: There is “scoring” feature in the Survey Design based on the answers to the questions.

  • GS: This appears to be done by simple addition. Is the Insigia PAM method still used? [I.e. a Survey where the scoring has to be done by submitting the answers to a third party web service]. If so can this cope with that?

• PKB: The Surveys can be conditional based on patient data.

  • GS: Which bits of the record can be used for this? Does it just have to be data from the organization who are doing the Survey?

    • PKB: The branching is from prior answers to the current Survey NOT their patient record.

• PKB: There is a lot of interest in using Surveys to initiate Consultations based on Patient Feedback.

  • GS: Isn’t that what that system in Portsmouth [MyRenalCare] does?

    • PKB: There is a lot of interest from MyRenalCare in working with us.

      • GS: MyRenalCare ( https://www.myrenalcare.com/ ) , as far as I’m aware is a system which currently purely works based on patient entered measures/scores. Is it possible PKB are going to make the Unit data that goes via us available to it? Do we care?

Patient Data

• GS: Are GP (and Patient) Medications kept Separately? [Not sure what I meant by this.]

  • GS: I might be referring to whether we can identify data we sent (i.e. is alreadty in the UKRDC) when retrieving data. This is especially relevant when the hospital is also supplying data directly.

• GS: Which results/observations are being sent directly by the hospitals? Are there any omissions which are only in the Renal Systems?

Patient Data - Accessing

• GS: Are there restrictions on us only being able to access “our” patients?

  • PKB: Any data you access is logged. You should only access data you have a right to access. If you access data you shouldn’t that’s your responsibility.

    • GS: Not sure this quite answers the point if we use the system other than in a per-NHS Number manner.

      • GS: If we had to do it 1 request per NHS Number periodically how

• GS: Can we retrieve only new/changed data? Or just patients who have been updated?

• GS: Does/Should PKB respect the National Data Opt-Out

• GS: With GP Data does it respect Type 1 Opt-Outs? ( Opt out of sharing your health records ).

• GS: Does the returned data show the source of the data?

• AA: Can we retrieve data for patients that haven’t registered but are still linked to us?

  • PKB: Yes

• AA: Is there any rate limit for API calls?

  • PKB: No

    • GS: I think this would need confirming with someone more technical such as Andy Clowe. Previously they’ve complained that we’ve overburdened their Live environment.

• AA: How much GP data is on PKB and what does the future hold?

  • PKB: Currently, about 500k GP records on PKB. Expecting 2.5 million soon as London GP’s come on with PKB

• GS: If you wanted to wanted to retreive data “by Team” rather than “per NHS Number” can you hide membership of a Team from a patient, or is there otherwise a method of creating a cohort? The scenario I have in mind is where we wanted to make a sub-cohort of people with particular medical attributes but felt it would be inappropriate for the patient to see themselves labelled as such.

Patient Data - Coding Standards

• GS: Why’re you using LOINC?

  • PKB: It’s more of an international standard but we expect to be accepting SNOMED as the GPs are starting to move to using it. We are deciding which we want to use as the internal standard and which we’ll convert to/from.

Patient Entered Data - Dipsticks

• PKB: Patients can enter results from Urine Protein dipsticks, such as those which can be bought from Superdrug.

  • GS: I assume there could be something similar for “Covid” LFTs? If not could this be put in place prior to the next pandemic?

• GS: Which results are patients able to Enter? And how can this be expanded?

FHIR4 - API Calls

• GS: PKB are moving to FHIR V4 - Is there a likely deadline for disabling the HL7v2 Messaging?

  • PKB: Due to the slow rate of change in the NHS it is unlikely the HL7v2 Messaging will ever be disabled. We encourage all new development to be done on FHIR where possible though.

FHIR4 - Data Storage

• GS: At the moment we only send the Treatment Modality data in the MyCarePlan HTML. Can we send it as a data item?

  • PKB: Our new database is going to be based on FHIR4 so if you can find where it should go in FHIR4 we can accept it.

    • GS: I think the most likely place would be a CarePlan ( https://fhir-ru.github.io/careplan.html ) , but that would be my own best efforts - it doesn’t make it “correct”, nor the way the wider NHS might send that data - especially here where it’s a concept we use rather than one related to clinical care. To do this ‘properly’ we might want to regiser an OpenEHR ( https://openehr.org/ ) Architype for this kind of record. Or, we might be lucky and PKB will just let us do what we think best.

Unit Information

• FB: In PV there was a My Hospitals page with details such as Website, PV Contact, Dialysis Contact etc. Is there an equivilent in PV?

  • PKB: For each Teams there is a message that is shown on Joining and one which can be viewed by the Patients - see https://manual.patientsknowbest.com/coordinator/institution#h.p_ly2Pxz_5Cqxu

  • PKB: The alternative is to use the Library.

RADAR

• PKB: We would like you to just use the “UKKA Organisation” on PKB rather than having an additional “RADAR” one.

  • GS: Are there any issues with this?

    • GS: What would happen in a situation similar to if we had added NURTURE Teams to PKB and then the project wanted to take ownership of those Teams?

    • GS: What if a patient wanted to be a member of RADAR but not have their data sent to the UKRR?

    • GS: Not a problem in our situation but I think we’re going to have to make Katie (or whoever) a UKKA Administrator, rather than just a RADAR one.

• GS: Can we obtain data from RADAR Centres who are not Main Renal Units (i.e. do not have a PV/UKRDC Feed) but are on PKB? Is there anything we would need to do to engage with them?

• GS: Can we bill RADAR for any data from PKB? (as in to recoup the cost of our whole involvement, as much as the technical “cost” of extracting the data).

Lab AKI

• GS: Could we use PKB to do the Lab AKI Collection?

  • GS: Probably not as we can’t identify a cohort within PKB who have had the alert. It may be possible to collect more creatinine follow-up data though, however this may need an amendment to the s251.

UKKA

• GS: Are we allowing PKB to insert themselves into our regular work flow?

• GS: May be a bit late but should the UKKA have a “share” in PKB? Firstly to try to address the question about data flow control but also so we benefit from the effort we’re putting in?

Phase 2

• PKB: We would like to start looking at this in August.

  • GS: Resources?

TODO:

• GS: Refresh memory about what happened with the “Sabine” Survey Project - basically did we return XML or PDF to the Units?

• GS: NPEX

• GS: Send SNOMED Codes to PKB.

• GS: Send Pre/Post LOINC Codes to PKB

• GS: Send Screenshot of typical renal unit from PV.

• GS: “Send screenshot/URL of Clinics to UKKA.” [This may be the URL Darryl provided].

• AA: Attempt some test retrievals from the API, especially Imperial patients (Radar only)