ArticleDigital health
A case study of stakeholder perceptions of patient held records: the Patients Know Best (PKB) solution.
Article in Digital health. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 4 of them syntheses that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
10 citing papers in PubMed, 4 syntheses or guidelines pooled it, 21 citations in OpenAlex.
- Patient-Centered Digital Health Records and Their Effects on Health Outcomes: Systematic Review.Journal of medical Internet research · 2022Pooled it
- The Impact of Digital Patient Portals on Health Outcomes, System Efficiency, and Patient Attitudes: Updated Systematic Literature Review.Journal of medical Internet research · 2021Pooled it
- Understanding Clinicians' Adoption of Mobile Health Tools: A Qualitative Review of the Most Used Frameworks.JMIR mHealth and uHealth · 2020Pooled it
- Social, Organizational, and Technological Factors Impacting Clinicians' Adoption of Mobile Health Tools: Systematic Literature Review.JMIR mHealth and uHealth · 2020Pooled it
- Nurses' Experience Using Telehealth in the Follow-Up Care of Patients with Inflammatory Bowel Disease-A Scoping Review.Nursing reports (Pavia, Italy) · 2025Review
- Toward Personalized Care and Patient Empowerment and Perspectives on a Personal Health Record in Hemophilia Care: Qualitative Interview Study.JMIR human factors · 2024Article
- Proof-of-concept solution to create an interoperable timeline of healthcare data.BMJ health & care informatics · 2023Article
- The Factors Associated With Nonuse of and Dissatisfaction With the National Patient Portal in Finland in the Era of COVID-19: Population-Based Cross-sectional Survey.JMIR medical informatics · 2022Article
- Digital Monitoring and Management of Patients With Advanced or Metastatic Non-Small Cell Lung Cancer Treated With Cancer Immunotherapy and Its Impact on Quality of Clinical Care: Interview and Survey Study Among Health Care Professionals and Patients.Journal of medical Internet research · 2020Article
- Factors Impacting Clinicians' Adoption of a Clinical Photo Documentation App and its Implications for Clinical Workflows and Quality of Care: Qualitative Case Study.JMIR mHealth and uHealth · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionPatients Know Best (PKB) provides a patient portal with integrated, patient-controlled digital care records. Patient-controlled personal health records facilitate coordinated management of chronic disease through improved communications among, and about, patients across professional and organisational boundaries. An NHS foundation trust hospital has used PKB to support self-management in patients with inflammatory bowel disease; this paper presents a case study of usage.
methodsThe stakeholder empowered adoption model provided a framework for consulting variously placed stakeholders. Qualitative interviews with clinical stakeholders and a patient survey.
resultsClinicians reported PKB to have enabled a new way of managing stable patients, this facilitated clinical and cost effective use of specialist nurses; improved two-way communications, and more optimal use of outpatient appointments and consultant time. The portal also facilitated a single, rationalised pathway for stable patients, enabling access to information and pro-active support. For patients, the system was a source of support when unwell and facilitated improved communication with specialists. Three main barriers to adoption were identified; these related to concerns over security, risk averse attitudes of users and problems with data integration.
conclusionsPatient-controlled personal health records offer significant potential in supporting self-management. Digital connection to healthcare can help patients to understand their condition better and access appropriate, timely clinical advice.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.