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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 are at the Care Information Exchange page 

• 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

• A medical networking site as Patient held records 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 85258

• Use 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

• The use of a novel web-based and patient focussed technology (Patients Know Best) with undergraduate students as an aid in understanding key concepts and develop online communication skills. Evaluation Report Leicester University

• 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 

• New models of home care & Delivering better services for people with long-term conditions: Building the house of care Kings Fund 

• Research report March 2020: Achieving scale and spread The Nuffield Trust

• A case study of stakeholder perceptions of patient held records: the Patients Know Best (PKB) solution University of Cumbria 

• Royal College of Physicians “Personal health records (PHR) – landscape review” report using Patients Know Best. Royal College of Physicians.

• Deloitte Centre for Health Solutions : Digital Transformation: Shaping the Future of European Healthcare (p36-37).Report Sept 2020.

• Swansea Bay Patient Portal Staff and Service User Feedback Report  

• 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

• A Ledger of Me: Personalizing Healthcare Using Blockchain TechnologyPreview review of blockchain technologies

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 Luton & Dunstable University Hospital NHS Trust