www.patientsknowbest.com

Contents

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1. Background to the switchover
2. How will this switchover work for existing PatientView patients?
1. Timeline of PatientView to no longer receive new data from the UKKA in Scotland.
2. What do kidney centres need to do?
3. What if a patient has not heard about the switchover, and contacts the kidney centre after the PV feed is turned off, to say that they are no longer receiving data in PV?
3. Signing up new patients to PKB:
• Via the kidney centre.
• What if an existing PV patient does not wish to use PKB?
4. What if a patient says they have not received data?

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1. Background to the switchover

The UK Kidney Association (UKKA) have commissioned Patients Know Best (PKB) to replace PatientView (PV) as a patient-facing portal for kidney patients in the UK. As well as ensuring a continuation of service for kidney patients, several objectives have been achieved with the migration to PKB including; more comprehensive integration with Trusts/Boards, increased security, plus advanced functionality, which provides a full-featured patient portal.

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To facilitate this continuation of service, while also supporting patients in making their own decisions regarding how their confidential health data are processed, the UKKA and PKB have produced the following guidance for kidney centres to help with the on-boarding of patients onto the PKB platform.

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2. How will this switchover work for existing PatientView patients?

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2a. Timeline of PatientView to no longer receive new data from the UKKA in Scotland.

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• The intention of the UKKA is to close the data feed to PatientView by the end of May of 2023 in Scotland. This means that new data will not be sent to PV accounts from this time.
• Please note that the UKKA will not turn off the sending of data to PV until the switchover to PKB is complete.
• To continue to see their existing and new data, patients will need to complete registration with PKB.
• Patients should have been informed about the switchover via:
• The PV website
• Their local kidney centre
• UKKA social media accounts
• Various kidney charity websites and publications

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2b. What do kidney centres need to do?

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• The Scottish Government and NHS Scotland are currently working to conclude the necessary IG documentation with PKB and the UKKA.
• Once IG is complete, all the existing patient data on PV will then be sent into the patient records in PKB. All new data will continue to use the same data flow, with the administrators and technicians at the kidney centres needing to do nothing different.
• Kidney centres will need to inform their patients that they need to register for PKB to continue to access their data. This can be done as follows:
• A csv upload can be performed to add patient emails to their record in PKB. This will trigger an email invitation directly to that patient via the address added by the team.The PKB team members working with that kidney centre can support the local team through this process.
• The patient then clicks the registration link, completes the sign-up process and is then able to login and see their data.

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2c. What if a patient has not heard about the switchover and contacts the kidney centre after the PV feed has been turned off to say that they are no longer receiving data in PV?

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• If they contact the kidney centre directly, then the local team can search for the patient and add their email, which will trigger the invite link to the patient.
• If the patient was part of the csv upload but did not see the email - the kidney centre team can search for the patient and send a “remind/reminder” email.
• If they contact the PKB helpdesk via help@patientsknowbest.com, our team will give them the information regarding the switchover and direct them to the appropriate local contact.

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3. Signing up new patients to PKB

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Please note - the following instructions mention the new UKRDC dashboard that the UKKA are currently rolling out.

• A presentation about the dashboard, and its uses, is arranged for kidney centres in Scotland at 10am on April 27th 2023. It will be given by Dr Joel Collins from the UKKA.
• If you have any questions regarding the dashboard, please email joel.collins@renalregistry.nhs.uk.

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3a. Via the kidney centre

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• The patient expresses interest to the kidney centre about joining PKB (after discussion with the kidney team or through reading the information themselves). The local team can record this however they feel best.
• The kidney centre administrator selects the “PV Flag” in their renal IT system. This will enable the flow of data from the centre into the UKRDC (the UKKA’s data repository), creating a patient profile within 24 hours (if one doesn’t already exist).
• The centre administrator logs into the UKRDC Dashboard, finds the patient profile and records the patient’s wish for PKB membership/record creation by selecting “Add Memberships” and then “Create PKB Membership”.

• The UKRDC will then automatically:
• Create a PKB membership record in the UKRDC.
• Send the patient’s demographic data to PKB adding them to the UKKA Organisation.
• From the same page, the kidney centre administrator should then synchronise the patient’s record to PKB by selecting “Sync to PKB”.

• The UKRDC will then automatically:
• Do an initial send of any data, adding the patient to a) The correct Hospital Trust organisation and b) The correct kidney team(s) and process an initial send of data into the patient's record .
• The patient’s record will be ready to be claimed on PKB, following which they can view their data including test results.
• The patient can complete registration on to PKB if the local team adds the email provided to their PKB record, which will trigger an invite to the patient’s email account.

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3b. What if an existing PV patient does not wish to use PKB?

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• It should be made clear to patients that whether they transition to PKB or not, PatientView will be switched off during May 2023 in Scotland and they will not be able to view their test results that way any longer.
• The kidney centre should inform the UKKA so that they can turn off the flow of data into PKB.
• The data may still be required to flow into the UK Renal Data Collaboration to support other projects that the patient is signed up to, this will be addressed on a case-by-case basis.

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4. What if a patient says they have not received data?

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PKB is now part of the UK Renal Data Collaboration (UKRDC). This was set up in 2012 to improve the standard and detail of kidney data across the UK and to enable the patient to see their data.

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You can see from the diagram below that the kidney centre sends the patient data to the UKRDC data repository. This is the central point of the UKRDC and from there data is pushed to a range of different organisations.

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The kidney centre and the UKKA control when this data can be seen. PKB will show the data as soon as we receive it from the UKRDC. If there are any delays to the data showing up in PKB then the kidney centre needs to check with the UKKA if:

• The kidney centre has sent the data to the UKRDC.
• If the UKAA has sent the data from the UKRDC on to PKB.

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The patient will see the data as soon as it is sent to PKB.

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www.patientsknowbest.com

Published Dec 2022 - Version 1