Patients Know Best is the largest provider of Personal Health Records (PHRs) in Europe and is currently contracted for over 12 million patients in the UK.

For nearly 20 years, people with kidney disease were able to see their test results online via PatientView (PV). When PV was first established, kidney information systems were more advanced than other medicine specialities, but now the information landscape and confidentiality rules around systems using patient information have changed. Ensuring that PV could achieve the latest demanding criteria for data security would be a complicated process.

The rebuilding and upgrading of PV would be expensive and the ongoing maintenance challenging. Bringing the viewer in line with current standards was better supported by an independent company that already has an excellent security set-up. The UKKA worked with Patients Know Best (PKB) to provide the security and advanced functionality required.

PKB is a well-established Personal Health Record provider hosting records for over 12 million people in the UK. Their platform offers patients and their kidney teams important enhancements in functionality. These include care planning, a symptom tracker, an appointments diary, a file of your important letters and additional data if the hospitals you attend, or your GP surgery, make use of PKB.

Patient information in PKB are encrypted records and PKB is prohibited from further use of the data, including sharing with third parties not engaged in patient care, or selling it.

PKB have created a short video showing you how to navigate PKB and find your results.

If you still cannot find your results after watching the video, email [email protected] for more support.

Ranges often vary due to differences in how laboratories perform their tests, which is why laboratories send reference ranges for each test result. Until the healthcare organisation responsible for your kidney centre sends these reference ranges to the UKKA, we are unable to send these onward to PKB to display alongside your test results. However, the UKKA is now providing PKB with standard ranges for select tests as follows:

• Sodium
• Haemoglobin
• Albumin Creatinine Ratio in urine (ACR)
• Protein/Creatinine ratio in urine (PCR)
• Cholesterol
• HbA1c
• Phosphate
• eGFR
• Creatinine
• Potassium
• Urea

Yes, patients were consulted on the switch from PatientView to Patients Know Best. It was also discussed and approved via the UKKA Patient Council.

PKB continues to listen to and engage with kidney patients and will be making improvements and updates following their feedback.

The new system, although visually different, offers advanced features and functionality as well as increased security. UKKA along with Patients Know Best continues to listen to and engage with kidney patients and will be making improvements and updates following their feedback.

If you do not want to use PKB, you will need to obtain your test results another way, for example by calling your kidney centre and asking them to give you the results over the phone.

Our UK Renal Registry (UKRR) IT staff have developed a data flow that will send the PatientView (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. This is where the data will be displayed for patients when signing on to the PKB system.

The UK Renal Registry will not be contacting patients directly. After email addresses on PatientView have been validated, patients will be sent an email from their Renal Unit or from PKB.

There will be no additional financial cost to trusts for the routing of the PatientView or RDA data flow to PKB.

This arrangement will be valid for 5 years.

If a Trust or Renal Unit signs up directly with PKB, the annual PV fee that is currently charged by the UKKA/RA will cease and the Trust will be left to negotiate a contract with PKB. It will be the responsibility of the Trust and Renal Unit to extract data from the Renal IT system and send directly to PKB.

If a Renal Unit decides not to sign up to PKB, the annual Patient View fee per RRT patient will still be payable to the UKKA/RA.

A detailed guide for current PatientView users to demonstrate how to use their Patients Know Best record and where to find corresponding features that are currently used in PatientView is available here.

A new flow of data from PKB to the UK Renal Registry has been 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 will be an impact on patients, as renal specific data will not be available in the PKB feed and there may be a cost involved to units for PKB to integrate the data.

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 the UKRR.

Over the coming months, members of the UKRR and PKB teams will contact your renal unit and trust to initiate the integration work required.

• Yes, PDFs, Word documents and other files all work.
• They work on the patient’s chosen device including smartphones.
• The letters appear on the events and messages page

• 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 PatientView NHS number will automatically receive their data with no effort by their renal unit.

• Yes, PKB already tracks consent to contact for research, and the patient’s preferred communication channels.
• Trusts can achieve significant cost savings in postage.