Pilot studies
Electronic personal health records for patients on home parenteral nutrition: A pilot study St Marks Hospital
Monitoring biologics in inflammatory bowel disease (IBD) using the Patients Know Best electronic portal: a pilot study of uptake, acceptability, and outcomes St Marks Hospital
Randomized Controlled Trials (RCTs)
Blood pressure after PREeclampsia/HELLP by SELF monitoring (BP-PRESELF): rationale and design of a multicenter randomized controlled trial Radboud University Medical Center, Netherlands
Surveys
Electronic personal health records for patients on home parenteral nutrition: A patient satisfaction survey St Marks Hospital
Descriptive/ Observational studies
Use of patient-held information about medication (PHIMed) to support medicines optimization: protocol for a mixed-methods descriptive study St Marks Hospital
Long-term Safety and Efficacy of Low-dose Azathioprine and Allopurinol Cotherapy in Inflammatory Bowel Disease: A Large Observational Study Surrey and Sussex Healthcare NHS Trust
Scenario-based design for a hospital setting: An exploratory study of opportunities and barriers for personal health records usage Betsi Cadwaladr University Health Board & Bangor University
The Impact of the COVID-19 Pandemic on the Uptake of Influenza Vaccine: UK-Wide Observational Study Imperial College NHS Trust
Evaluation/ Case studies
Empowering patients through educating and counseling for lifestyle changes using the web-based intervention “care information exchange”: a mixed-method service evaluation Imperial College London
A framework for evaluating the economic impact of EHR-based interventions Imperial College London
More evaluations protocols here
Virtual Support at Home: The Impact of innovation for families with children on parenteral nutrition GOSH
Patient empowerment: designing technology that supports people’s coping strategies GOSH
Patients’ and healthcare professionals’ experiences with a patient-controlled electronic medical record and communication platform (Patients Know Best® (PKB)) Janssen: Pharmaceutical Companies of Johnson & Johnson UK
A qualitative evaluation of the Patients Know Best® (PKB) patient-controlled electronic medical record and communication platform in UK HIV services Janssen: Pharmaceutical Companies of Johnson & Johnson UK
More from Janssen: Pharmaceutical Companies of Johnson & Johnson UK here
Ibd-Sshamp (Supported, Self-help and Management Programme); UK’S first Internet-based Remote Management System for Managing Stable IBD Luton & Dunstable University Hospital
More from Leicester University Medical School here
Introducing PKB at Bristol’s Major Trauma Centre – benefits analysis and case study North Bristol NHS Trust
Monitoring the safety of ketamine in treatment-resistant depression Oxford Health NHS Foundation Trust
Improving care for Leukaemia patients in Oxford University Hospitals Oxford University Hospital
A qualitative evaluation of the Patients Know Best® (PKB) patient-controlled electronic medical record and communication platform in UK HIV services Plymouth Hospitals NHS Trust
Patients’ and healthcare professionals’ experiences with a patient-controlled electronic medical record and communication platform [Patients Know Best® (PKB)] Plymouth Hospitals NHS Trust
Use of a Web-based Personal Health Record (Patients Know Best) to build closer relationships with people with Type 1 Diabetes Sandwell General Hospital and West Birmingham Hospitals
Implementing ‘Patients Know Best’: Personal Health Records pilots in Sandwell and West Birmingham Hospitals NHS Trust Sandwell General Hospital and West Birmingham Hospitals
Low‐dose azathioprine or mercaptopurine in combination with allopurinol can bypass many adverse drug reactions in patients with inflammatory bowel disease Surrey and Sussex Healthcare NHS Trust
More from Surrey and Sussex Healthcare NHS Trust here
The Impact of an Open Access, Non-Face to Face Nurse-Led Inflammatory Bowel Disease Service on Service Transformation and Patient Outcomes PROs- Surrey and Sussex Healthcare NHS Trust
A population-based model of care for people with inflammatory bowel disease – patient-reported outcomes PROs - Surrey and Sussex Healthcare NHS Trust
A case study of stakeholder perceptions of patient held records: the Patients Know Best (PKB) solution University of Cumbria
Economic Impact Evaluation Case Study: Patients Know Best York Health Economics Consortium
Royal College of physicians: A case study of PKB and St Marks Royal College of Physicians
Increasing but inadequate intention to receive Covid-19 vaccination over the first 50 days of the impact of the more infectious variant and roll-out of vaccination in the UK: indicators for public health messaging CIE Imperial College NHS Trust
The Development of a Web-Based, Patient-Centered Intervention for Patients With Chronic Myeloid Leukemia (CMyLife): Design Thinking Development Approach - CMylife RadBoud UMC
A collaboration on teaching communication by text -Leicester Medical School and Shout 85258Use of Patients Know Best as a tool to improve patient engagement and deliver a digital dietetics service to kidney patients Hull University Teaching Hospitals NHS Trust
Reports
Patient-Powered Safety: Reducing harm through co-production with patients Wales
Patient Discharge from Hospital to General Practice: Thematic Report 2017-2018 Wales
Impact Report 2017/ 18 Care Information Exchange
PKB social impact logic model - Theory of change JJCCT Social Impact report
Innovating for Improvement Quality Trauma Discharge North Bristol
The effectiveness and impact of patient-controlled records: A report on Patients Know Best Patients Know Best
People Powered Health: Health for People, By people and with people People Powered Health
Research report March 2020: Achieving scale and spread The Nuffield Trust
https://sites.google.com/a/patientsknowbest.com/academic/university-of-cumbria University of Cumbria
Royal College of Physicians “Personal health records (PHR) – landscape review” report using Patients Know Best. Royal College of Physicians.
Swansea Bay Patient Portal Staff and Service User Feedback Report - Please find below the report attached as a PDF Doc
UK Health Security Agency - English Surveillance Programme for Antimicrobial Utilisation and Resistance (ESPAUR) Oversight Group. Please find below the report attached as a PDF Doc
From CML to CMYLIFE - A lifelong journey. - p 128. Radboud University Nijmegen
Blogs/ Articles/ Posters
CARDIFF AND VALE’S Audiology team win a national award for reforming the care pathway Audiology team at Cardiff and Vale University Health Board
Patients know best: an evaluation of “app-based” online pediatric tracheostomy care in South Wales Cardiff and Vale University Health Board
“How can doctors meet relatives' information demands?” British Medical Journal
How digital technology is transforming health can social care. Connected Health
Electronic Personal Health Records For Patients On Home Parenteral Nutrition: A Patient Satisfaction Survey British Society of Gastroenterology - St Marks
Using a Shared Electronic Patient Record to Develop and Assess e-Consultation Skills- UKCC poster Leicester University Medical School
Transformation of delivery of Paediatric epilepsy care at a district general hospital utilizing “Patients Know Best (PKB)”, a patient-held medical record on an interactive web-based digital platform (please find poster below attached). Luton & Dunstable University Hospital NHS Trust