The UK Kidney Association (formerly known as the Renal Association (RA)) has contracted Patients Know Best (PKB) to re-platform the national patient-facing system PatientView (PV) to the PKB personal health records platform (PHR).

• Guidance for Adult Kidney Centres in England and Wales

• Guidance for Adult Kidney Centres in Scotland

• Guidance for Paediatric Kidney Centres

• Guidance for Adult Kidney Centres in Northern Ireland (coming soon)

Some organisations will already be familiar with Patients Know Best, which is the largest provider of PHRs in Europe and currently contracted for over 15 million patients in the UK.

The current PV system provides renal patients in the UK with a view of their clinical data. However, this 5-year deal between PKB and the UKKA is expected to benefit more than 70,000 patients receiving care and treatment for renal disease across 62 hospitals by offering patients and their renal teams more advanced features and functionality with PKB. This includes increased security, care planning, team-based messaging and an ecosystem of integrated wearable and monitoring devices to support clinical transformation.

A comprehensive technical and governance review has been completed.

The UKKA IT team are currently completing the development of a data flow that will send the PV data in the current PV file feeds or RDA feeds (for those sites who have already started sending UKRDC feeds) to PKB in the required format, where the data will be displayed for patients when signing on to the PKB system. There will be an upload of historic PV data into the PKB records, and once live, all new data will also flow into the PKB record.

To support kidney teams in making this transition, we have created a guide to switching from PatientView to Patients Know Best.

At any point, a kidney team (whether they are existing PKB or non PKB customers) is welcome to work with PKB to begin using PKBs additional features and functionality including questionnaires, care planning, symptom tracking and secure messaging for their total kidney cohorts.

Workflow

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Common questions

How will the patient record creation and registration process work with PKB? What will change?

• Patient records will initially be created in a UKKA PKB team, and patients will then also be attached to their appropriate kidney unit. When completing registration for PKB the patient will go through a consent process to agree to be part of these teams.

• The simplest route for a patient to register will be through the PKB Team Connect page that will enable a patient to claim (if the record is already created) or create (if they are a new patient) their PKB record and be attached to the UKKA team and the appropriate kidney unit. This process utilises NHS Login verification, and means that there is no administration for the team in the kidney unit. This is currently only available in England and Wales.

• Patients can also be invited to register using a verified email address if the kidney unit has it. This process will involve the kidney unit sending the invite.

• Once they have signed up, registered users of PKB with a PV NHS number will be able to see their historic PV data and automatically receive their new data with no effort by their kidney unit.

How will local hospital staff troubleshoot patient logins or will these be managed by PKB?

• Patients and staff can reset their own passwords by clicking the Forgot Password link on the login page (see below) and following the instructions.

• If they are unable to reset their own password for any reason, they can click the link on the Reset Password page to contact the Patients Know Best support team.

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Will PDF letters still work and be accessible on PKB?

Hospitals currently send patient letters in PDF format to PatientView.

• Yes, PDFs, Word documents and other files all work.

• They work on the patient’s chosen device including smartphones.

• The letters appear in the events and messages page.

Data sharing – will anything change? Will hospitals need a new data sharing agreement with PKB?

• Nothing needs to change i.e. the existing data sharing arrangements between the NHS Trusts and UKKA remain.

• The UKKA will pass data onto PKB through its data sharing agreement with PKB.

• Each Trust will need a data sharing agreement with PKB to provide data that currently does not come through the UKKA integration with PKB. This happens when the local kidney team wants to use PKB’s full functionality, including online consultations and shared care planning.

• Where a kidney team’s NHS Trust already uses PKB, the existing data sharing agreement is sufficient. Where a kidney team is the first in the Trust to use PKB, a new data sharing agreement will be necessary between the Trust and PKB.

What will hospitals be able to do in PKB? Is there a manual for administrators of PatientView?

• The basics are covered in this guide to switching from PatientView to Patients Know Best.

• Information about the full functionality of PKB can be found here.

Can you clarify the future costs?

For sites in a direct contract with PKB:

• The 2021 capitation paid to the UKKA continues for the calendar year ending December 2021.

• The PKB licence cost for usage outside of kidney to be directly discussed with PKB.

• From 2022, the trust will no longer have to pay the UKKA an annual PV capitation if the kidney data are flowing into PKB directly; only the agreed cost with PKB is payable.

• If the kidney data are not flowing directly into PKB then the UKKA will discuss with the individual unit when this will occur and an interim charge may apply.

For sites not contracted with PKB by January 2022:

• Trusts will continue to pay to the UKKA a PV capitation for 2022 in March. This will be via the usual capitation fee based on the number of kidney replacement therapy patients and possibly an annual inflation adjustment.

• No payment will be made directly to PKB by the Trust.

• If a site contracts with PKB during the year, the Trust will negotiate the additional costs with PKB.

• Payment to the UKKA will be reviewed annually in February and will cease once the kidney data are flowing directly into PKB. However no refund for PV payments made to the UKKA for the year will be given. Therefore it is important that Trusts take this into account when contracting with PKB.

What advice has been given to kidney system suppliers ?

• No need to change, the existing integration from kidney systems to the UKKA continues, and UKKA’s new integration with PKB will pass the data onto PKB.

• There are opportunities from new integrations from kidney systems and Trust-wide electronic health records to PKB, including single sign-on, creation of shared care plans, and display of patient-entered data from PKB into Trust systems.

• There is no charge from PKB for Trust integrations with PKB or for use of the additional PKB features.

Can hospitals ask patients if they are happy to receive their letters electronically only?

i.e. without paper, and if they are happy to be contacted for surveys and clinical trial invites?

• Yes, PKB can already track consent to contact for research and the patient’s preferred communication channels.

• Trusts can achieve significant cost savings in postage.

Contact

If you have any questions, please contact PKB at renal@patientsknowbest.com.

Further information

• Renal care plan templates: used by Kidney teams, including an enhanced recovery post-surgery care plan

• Renal questionnaire template: for patients to complete in preparation fortransplant follow up appointment

• The ‘future is bright’ for patients of the Kidney Dietetics Service: how the Kidney Dietetics Service at Hull University Teaching Hospitals NHS Trust supports acute renal patients via PKB