Renal Patient View

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).

Some organisations will already be familiar with Patients Know Best, which is the largest provider of PHRs in Europe and currently contracted for over 12 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 RA is expected to benefit more than 76,500 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 before the contract with PKB and the implementation with NHS Trusts and renal units began in 2020.

What does this mean for trusts and renal units? The implications are different depending on whether a trust is signed up to PKB or not:

For trusts NOT yet signed up to PKB:

UK Renal Registry (UKRR) IT staff are currently developing 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.

The UKRR will contact PV patients via email (where valid email addresses are available) to let them know of the change in the patient viewer and how to sign on to PKB. As some email addresses on PV may have changed/some patients have not yet signed up, the UKRR will need help from units and their PV administrators in contacting their patients with communications about the change to PKB.

The UKRR will put information on the current PV site to direct users to PKB. More information about the process of moving PV users to PKB will be made available as we progress with the project. It is very important that sites that do sign up with PKB directly ensure the integration of the renal data with the PKB data feed so that there is availability of renal specific data. The data flow to the UKRR will then change as described below for the next stage.

For trusts and renal units already signed up to PKB:

Post the above being delivered (UKRR establishing a data flow to PKB to enable a transition for patients), members of the UKRR and PKB teams will contact your renal unit and trust to initiate the integration work required as outlined below. Of course, we aim to make this transition as seamless as possible for all those involved and more information (including FAQs etc) will be made available in the coming months.

A new flow of data from PKB to the UKRR will subsequently be developed and this will in the first instance be for the information currently displayed in PV, which is mainly test results from laboratories. There should be no additional financial impact on trusts where the renal system is already integrated with PKB. Where the renal system is not integrated into PKB, there may also be some capacity requirement for IT staff in trusts and renal units to assist with the mapping of data items for the data flow to PKB and consequently this can then flow to the UKRR.

To further support our NHS trust partners, we will develop a resource toolkit which can be used to help notify patients and provide information and support for staff through the transition. This will include a package of relevant training where required.

Please kindly cascade this notice to the relevant Information Technology and professional renal teams within your organisation for information. If you have any questions, please contact the Renal Association at pkb@patientview.org or PKB at renal@patientsknowbest.com.

For all trusts and renal units:

At any point, a renal team 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 renal cohorts.

Common questions

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

  • Registration will be through local renal teams onboarding patients using one of PKB’s registration processes.

  • These include mass registration using a spreadsheet to upload email addresses and using a Trust’s existing processes for onboarding non-renal patients using PKB.

  • Existing registered users of PKB with a PV NHS number will automatically receive their data with no effort by their renal unit.

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

  • For hospitals that already use PKB, existing NHS administrative staff will take care of these issues.

  • For hospitals that do not yet use PKB, the hospital’s PV administrator will handle these issues as an interim.

  • Hospitals that do not yet use PKB will take over these tasks as part of their free usage of full PKB functionality for renal patients.

How will local hospital staff troubleshoot patient’s data?

  • As soon as the local NHS hospital renal team registers for PKB, they will see all data and can work with PKB and patients to find and fix errors.

Will PDF letters still work and be accessible on PKB? Hospitals currently send patient letters in PDF format to PatientView.

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 Renal Association remain.

  • The Renal Association 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 does not come through the Renal Association integration with PKB. This happens when the local renal team wants to use PKB’s full functionality, including online consultations and shared care planning.

  • Where a renal team’s NHS Trust already uses PKB, the existing data sharing agreement is sufficient. Where a renal 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?

  • This is phase 2 functionality and is available immediately to any NHS Trust that wants to start using it.

  • The functionality includes messaging, consultations, symptom tracking and shared care planning for interacting with patients. Full functionality can be found here.

Can you clarify the future costs?

For sites already contracted with PKB:

  • The 2020 capitation paid to the RA continues for the calendar year ending December 2020.

  • The PKB cost to be directly discussed with PKB.

  • From 2021, the trust will no longer have to pay the RA an annual PV capitation if the renal data are flowing into PKB directly; only the agreed cost with PKB is payable. If the renal data are not flowing directly into PKB then the RA will discuss with the individual unit when this will occur and an interim charge may apply.

For sites not contracted with PKB by January 2021:

  • Trusts will continue to pay to the RA a PV capitation for 2021 in March. This will be via the usual capitation fee based on the number of renal replacement therapy patients and possible 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 RA will be reviewed annually in February and will cease once the renal data are flowing directly into PKB. However no refund for PV payments made to the RA 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 renal system suppliers ?

  • No need to change, the existing integration from renal systems to the Renal Association continues, and RA’s new integration with PKB will pass the data onto PKB.

  • There are opportunities from new integrations from renal 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.

Can hospitals ask patients if they are happy to receive their letters electronically only i.e. no paper? And if happy to be contacted for surveys, clinical trial invites?

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

  • Trusts can achieve significant cost savings in postage.