The UK Kidney Association chose Patients Know Best (PKB) to re-platform their national patient-facing system, PatientView, to the PKB personal health records.

PatientView supports patients receiving care and treatment for renal disease in the UK by sharing their clinical data using a patient portal. The move to PKB has build on this work by replacing the current portal to add advanced features including care planning, team-based messaging and an ecosystem of integrated devices.

Usecases

A patient using PKB, shares his inspiring personal story.
“Within the next six months, you will either be on dialysis or have had a transplant,” said my specialist at the Edinburgh Renal Department. October 2024 I’m not and I haven’t…. Read my full story below.

Key PKB Features

Messaging

• Patients have access to secure messaging (saving time on the phone).

• Messaging across multiple care providers, including carers in the conversations

• Team-based messaging allows teams to automatically receive secure messages and questionnaires as a group rather than as individuals

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Questionnaires 

Patients can initiate a questionnaire by clicking Start Questionnaire on their homepage or directly within the NHS App. Once completed, the questionnaire can be sent to a professional or team.

Teams using the questionnaire tool can ensure the outcome of clinical reviews is recorded and the patient has a copy. Teams can also identify patients suitable for virtual appointments or pre-operative assessment questionnaires.

PKB's advanced questionnaire functionality

The features include:

• Scoring and calculations

• Branching, allowing patients to complete the parts of the questionnaire that are relevant to them

• Coded fields questionnaires can be mapped to clinical codes

• Patients can save drafts

• Send questionnaires to patients who aren’t registered or already in your team

Questionnaire templates

• Pre clinic questionnaires

• Patient Reported Outcomes (PROMS)

• Capturing Digital Outcome Measures

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Care Plans

PKB has created a number of individualised and editable care plan templates for renal teams and their patients.

• My Condition Care Plan: HL7 care plan allows patients to view up to date medications and treatment plans

• Managing My Chronic Kidney Disease Care Plan: information care plan with videos and advice on how to manage chronic kidney disease

• Managing My Symptoms with Advanced Kidney Disease Care Plan: what to track and monitor and information about the team

• Enhanced Recovery After Surgery Care Plan: post-surgery care plan

• My Kidney Results and Measurements Tracker Care Plan: a place to track blood pressure and weight and view kidney blood results

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Library

• Relevant leaflets into the library

• No more paper

• No more email content, it's all on PKB

• Meet the team videos / including admin staff

• National and local support groups

• Kidney treatment options

• Living with Kidney disease

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Symptoms and Measurements

• Track symptoms and measurements related to kidney disease

• Allows clinicians to see trends or patterns

• Patient ability to share their kidney data

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Test Results

Some patients' records will directly integrate with a Trust, allowing for the immediate transmission of test results and reference ranges; however, if no such integration is in place, some patients will only receive results from the UKKA. Ranges often vary due to differences in how laboratories perform their tests, which is why laboratories send reference ranges for each test result.

The healthcare organisation responsible for the kidney centre needs to send these reference ranges to the UKKA, which sends them to PKB to display alongside your test results.

The UKKA is now providing PKB with standard ranges for select tests: sodium, Haemoglobin, Albumin Creatinine Ratio in urine (ACR), Protein/Creatinine ratio in urine (PCR), Cholesterol, HbA1c, Phosphate, eGFR, Creatinine, Potassium, and Urea.

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Further Information

• Patient view: an overview of the partnership and how it benefits patients

• Renal care plan templates: four renal-specific care plans used by renal teams - enhanced recovery post Kidney surgery, my advanced kidney, My conditions HL7 care plan and my kidney tracker care plan

• Renal Comms toolkit: includes background info, examples and useful information

• 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

• Kidney Dietetics at Hull: Using a personal health record to improve patient engagement and deliver a digital dietetics service to kidney patients

• Improvements based on feedback from UK Kidney association patients blog: how patient usage and feedback are making improvements in the PKB