ArticleBMC medical informatics and decision making2020
Caregivers' role in using a personal electronic health record: a qualitative study of cancer patients and caregivers in Germany.
Article in BMC medical informatics and decision making, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT06463158 (A Phase I Clinical Trial Evaluating the Impact of the Family Room App on Caregiver Well-being, Satisfaction, and Engagement in the Intensive Care Unit), which is not on this map. Cited by 9 papers, 2 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.
A Phase I Clinical Trial Evaluating the Impact of the Family Room App on Caregiver Well-being, Satisfaction, and Engagement in the Intensive Care Unit
Who cites it
9 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Measuring the willingness to share personal health information: a systematic review.Frontiers in public health · 2023Pooled it
- Systematic review of psychosocial needs assessment tools for caregivers of paediatric patients with dermatological conditions.BMJ open · 2022Pooled it
- Evaluating patient acceptability of clinical pharmacist engagement following clinical decision support.Exploratory research in clinical and social pharmacy · 2026Article
- The Prevalence and Predictors of Digital Proxy Behavior in the United States: Cross-Sectional Survey Study.Journal of medical Internet research · 2025Article
- Digital Health Portals for Individuals Living With or Beyond Cancer: Patient-Driven Scoping Review.JMIR cancer · 2025Article
- Preparedness for caregiving among caregivers of breast cancer patients and its association with health literacy and caregiving competence.Scientific reports · 2025Article
- Design of a Dyadic Digital Health Module for Chronic Disease Shared Care: Development Study.JMIR human factors · 2023Article
- Patient Portals to Support Care Partner Engagement in Adolescent and Adult Populations: A Scoping Review.JAMA network open · 2022Article
- Patient Portal Barriers and Group Differences: Cross-Sectional National Survey Study.Journal of medical Internet research · 2020Article
Corrections and comments
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Authors and funding
10 authors.
Funding
Abstract
backgroundParticularly in the context of severe diseases like cancer, many patients wish to include caregivers in the planning of treatment and care. Many caregivers like to be involved but feel insufficiently enabled. This study aimed at providing insight into patients' and caregivers' perspectives on caregivers' roles in managing the patient portal of an electronic personal health record (PHR).
methodsA descriptive qualitative study was conducted comprising two study phases: (1) Usability tests and interviews with patients with cancer and caregivers (2) additional patient interviews after a 3-month-pilot-testing of the PHR. For both study parts, a convenience sample was selected, focusing on current state of health and therapy process and basic willingness to participate and ending up with a mixed sample as well as saturation of data. All interviews were audio-recorded, pseudonymized, transcribed verbatim and qualitatively analyzed.
resultsTwo main categories emerged from qualitative data: 'Caregivers' role' and 'Graduation of access rights' - consisting of four subcategories each. The interviewed patients (n = 22) and caregivers (n = 9) felt that the involvement of caregivers is central to foster the acceptance of a PHR for cancer patients. However, their role varied from providing technical support to representing patients, e.g. if the patient's state of health made this necessary. Heterogeneous opinions emerged regarding the question whether caregivers should receive full or graduated access on a patient's PHR.
conclusionsIn order to support the patient and to participate in the care process, caregivers need up-to-date information on the patient's health and treatment. Nevertheless, some patients do not want to share all medical data with caregivers, which might strain the patient-caregiver relationship. This needs to be considered in development and implementation of personal health records. Generally, in the debate on patient portals of a personal health record, paying attention to the role of caregivers is essential. By appreciating the important relationship between patients and caregivers right from the beginning, implementation, of a PHR would be enhanced.
trial registrationISRCTN85224823 . Date of registration: 23/12/2015 (retrospectively registered).
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