A new digital record to manage kidney care
We have signed an important deal with Patients Know Best (PKB) to re-platform our national patient-facing system PatientView to the PKB personal health records platform.
This new system offers patients and their professional teams advanced features and functionality including increased security, care planning, team-based messaging and an ecosystem of integrated wearable and monitoring devices to support clinical transformation.
To support you through the transition of moving from PatientView to PKB, please download and share this guide or visit the PKB website to register.
A guide on how to deploy PKB for renal teams is available here.
Frequently Asked Questions for Patients
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 have been 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 are now working 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.
If you currently use PatientView, your record will stop being updated with data from January 2023. If you do not already have a PKB account, to continue to receive your data, and access many more tools to help you manage your health, please sign up to PKB and access your record here.
If you already have a PKB account, please connect yourself to the UKKA team via this link, and click share.
Please find a support guide here, and follow this from step 2.
If you need any support during the sign-up process, you can email firstname.lastname@example.org for additional guidance.
If you currently use PatientView, your record will stop being updated with data from the 7th of January 2023. Kidney patients wanting to continue to access test results and communicate with their care teams need to join PKB.
If you need some help adjusting to the new platform, be sure to check out this handy guide to switching from PatientView to Patients Know Best. It has step-by-step instructions and screenshots of where to find your messages, results, care plans, appointments and more.
We’re sorry if you haven’t been informed about the PatientView to Patients Know Best transition yet.
All renal units and clinical directors of these renal units in England have been contacted and informed, and your care team should let you know and be able to support you. If you are a patient in Wales you will be contacted by email or letter regarding the transition. If you are a patient in Northern Ireland your local unit will be in touch via email or letter to confirm how to register. If you are a patient in Scotland, your local unit will contact patients via email or letter to confirm how to register.
We are continuing to work with kidney patient charities including Kidney Care UK and the National Kidney Federation to share the news of the switch.
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.
When the switch to Patients Know Best is finalised, it will be the only personal health records platform dedicated to kidney patients. 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.
Frequently Asked Questions for units and healthcare professionals
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.
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 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.
Can hospitals ask patients if they are happy to receive letters electronically only? 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.
While we continue to transition to this new platform, patients can continue to utilise their PatientView accounts.
PatientView (PV) gives patients information about their own care, including blood test results, medications and clinic letters, along with information about their diagnosis and treatments. The information is taken from the renal computer systems within hospitals and is updated on a daily basis. Patients can also enter their own results for blood pressure, weight and glucose. These can then be seen by the doctors in their renal centre, which improves monitoring without the patient attending clinic. There is a messaging system that patients can use to send and receive messages from their centre and surveys can be set up and carried out online with the aim of improving care.
Patients must give written consent for their information to be sent to PV.
All renal centres and units in the UK (except Addenbrooke's, Cambridge and Imperial, West London) participate in PV.
Patients can ask their centre administrators to set them up with a username and password or can go to www.patientview.org and click on 'I want to join’. There is no charge for patients – funding for PV comes directly from the renal centres.
The PV mobile app launched in 2018 and affords the quickest way to access health records.
PV mobile for IOS on iTunes store (for iPhone, iPad)
PV mobile for Android on Google Play store
For support please get in contact