PKB Data Flow Permissions
- George Swinnerton
- Joel Collins (Deactivated)
This assumes that the UKRDC will receive identifiable information for all patients about whom we wish to exchange data with PKB. The implications of this will be discussed elsewhere in UKRDC documentation.
Current Situation
UKRDC Inputs from Units
“PV XML”
This is the historic feed which is still supplied by the majority of sites. Although we refer to it as “PV XML” because that was the original use it is now incorrect to associate it just with PatientView as its use has widened to include our RADAR system, as well as being a source of data to several research projects (SIMPLIFIED, PHOSPHATE, etc.). The renal unit will have satisfied themselves that the patient having consented to one or more of these projects gives them permission to enable the feed but there is nothing in the file itself to documents which project(s) gave rise to that.
“RDA XML”
This is the new feed which is presently supplied by a small number of sites but is expected to be used by the majority over the next year or so. An important difference here is that while the feed can be still enabled for an individual patient due to project participation the majority of feeds we receive will be because the patient meets the criteria for collection under s251.
While with the “PV XML” the majority of patients having the feed enabled would be for the purposes of PatientView, with the “RDA XML” one that ratio is very much reversed.
Input Processing
Both feeds are loaded into our UKRDC system. Any “RDA XML” files are accepted but with the “PV XML” ones we require that they have an open Program Membership for one or more of the projects that could use the feed. If no such memberships exist the file is rejected and the unit informed.
Memberships
As mentioned above we have a concept in the UKRDC of a Program Membership which is a dated period between which we assume the patient to be part of the corresponding project. Although for information reasons we may break these down into the individual Units/Groups a patient is a member of on a system for IG purposes we assume that membership of the system/project in any way allows for data to be collected from any Unit.
PV
PV sends the UKRDC a message (in “RDA XML” format) when a patient is added to a group (this includes account creation) or removed from a group (which includes deletion), or where the demographics of the patient have been changed.
RADAR
RADAR sends the UKRDC a message (in “RDA XML” format) when a patient is initially added and once a week as part of a general synchronisation.
Others
Other projects work in different ways but the essential behaviour is the same in that a patient has a Program Membership record opened when they join a project and closed when they leave.
PKB
If a patient has an open PV membership and does not have an open PKB membership one is created for them.
We do not close the PKB membership if they subsequently close their PV account (or their Unit does so on their behalf) as we cannot assume the two events are connected.
We do however close PKB memberships if a patient has a Date of Death added to their record.
Until recently we would also create a PKB Membership if a patient had data in “PV XML” format regardless of whether they had a membership. The assumption here was that a site sending us data in that format was likely to signify they wished to be on PKB but with the new RADAR consent forms we are no longer happy about making that assumption.
Most significantly we currently have no way of knowing when Renal patients are added (or indeed removed) from PKB.
UKRDC Outputs to PKB
We require that a patient has an open PKB Membership in order to send data to PKB.
PKB Inputs to the UKRDC
This is not yet available.
PKB “Memberships”
Initial Send
The initial demographic send was done using everyone who was on PV when we started sending data, excluding those for whom we had a Tracing DOD. This was done using the “Renal Association” credentials. Note - this may be referred to as the “Research” data pathway.
One record is sent per patient (by UKRDCID) using their latest demographics.
This also created a PKB Membership record for them in the UKRDC.
Unit Send
When each Unit comes onboard we do a send for all patients, excluding those for whom we have a Tracing DOD. This is done using the “Partner” credentials, referred to as the “Partner” data pathway.
Multiple records are send depending on how much data they have. Some types of data may be duplicated if we hold data from multiple sources (“Migrated from PatientView”, “PatientView XML”, “RDA XML”).
New Patient
If a patient meets the criteria for having a PKB Membership and does not already have one then data is sent to the “Research” data pathway, as with the initial send and a PKB membership created in the UKRDC.
Dead Patient
If a patient has an open PKB membership in the UKRDC and a Tracing DOD then an update is sent to the “Research” data pathway. Their PKB membership in the UKRDC is then closed.
Suggested Process
Patient Enrolment
The patient signs up to PKB
The patient contacts the Renal Unit and completes a consent form.
The patient is added to the Renal Organization
We are assuming that the Organizations will only ever contain patients from Renal Units (Main, Paediatric, Satellite etc.).
Although there isn’t a need at present to send additional data for patients who are only attending a hospital which sends data directly to PKB (for example Imperial) we think it worth considering if this process would work with these without us having access to non-Renal patients.
4. With the data feeds as-is most units will need to enable the “PV” feed in their Renal system.
Patient Moving Units
Basically as-above - the patient needs to contact the new unit and ask them to add them to the new Organization etc.
UKRDC Sending Data to PKB
The UKRDC will have credentials for each of the Renal Organizations
For each of the Organizations the UKRDC will make an A19 query for each of them asking for patients who have joined within the last X days.
The original idea was that each NHS number would be queried individually, triggered by a unit sending data for a patient for the first time. While this works with the “PV XML” feed where the feed being turned on correlates to the patient joining PKB we can’t make that assumption with an “RDA XML” feed and the alternative of continuous checking of each patient without an existing PKB Membership would be too resource intensive.
3. For all matched records a PKB Membership will be created in the UKRDC. This will enable the flow of data to PKB.
4. If there are gaps in this process, such as if a patient had joined PKB some time prior to being added to any of the Renal Organizations the backup would be for a PKB Membership to be created in the UKRDC via the Web UI - this could potentially be done by Units themselves.
5. With the process as-is we will a) Add patients to the appropriate Renal Teams and b) Add patients to the “Renal Association” Organization, both via A28 Messages.
UKRDC Pulling Data from PKB
This is a future requirement but at the moment we assume this will be done via membership of the “Renal Association” Organization.
Cease Data Send on Patient Withdrawal from PKB
If a patient withdraws from the PKB (i.e. asks for their account to be deleted) their PKB Membership needs to be manually deleted from the UKRDC. We assume that this will be be infrequent enough not to be a problem. This would be done via the UI either by the Unit directly or by UKRR staff.
The risk if this is not done prior to the account being deleted from the PKB system is that we will send another A28 message and effectively re-create the account.
Cease Data Send on Patient being Inactive
Because PKB’s default position is to retain patient data unless ordered otherwise we have a concern about continuing to send data when a patient has ceased to use PKB, or, in the case of those patients who were migrated from PV may never have used it.
We intend to have a process using the “Indicator” last-login report you’ve already provided where those patients who have not logged in for a period of a year after their UKRDC PKB Membership was created have that membership ended so no more data is sent.
If the patient later changes their mind a new membership can be created via the UKRDC UI and a send of the data backlog triggered.