Toward Personalized Care and Patient Empowerment and Perspectives on a Personal Health Record in Hemophilia Care: Qualitative Interview Study
People with hemophilia, their parents, and health care providers welcomed the development of a PHR, as they expected it would result in better coordinated care. Formulated expectations and concerns will contribute to the successful development of a PHR for persons with hemophilia, and ultimately, for all persons with a chronic condition.
Authors
- M.H.E. Driessens (ORCID: https://orcid.org/0000-0001-7423-8538)
- Martijn R Brands (ORCID: https://orcid.org/0000-0002-3188-5900)
- Samantha C. Gouw (ORCID: https://orcid.org/0000-0002-1957-4122)
- Johanna G. van der Bom (ORCID: https://orcid.org/0000-0001-9095-2475)
- Marjon H. Cnossen (ORCID: https://orcid.org/0000-0003-1557-2995)
- F.J.M. van der Meer (ORCID: https://orcid.org/0000-0002-0221-9618)
- Lotte Haverman (ORCID: https://orcid.org/0000-0001-7849-0562)
- Stephan Meijer (ORCID: https://orcid.org/0000-0003-4003-3547)
- Karin Fijnvandraat (ORCID: https://orcid.org/0000-0003-0904-4360)
- Jelmer J. Muis (ORCID: https://orcid.org/0000-0001-9038-9379)
- Marianne de Jong
Institutions
- Leiden University Medical Center (NL)
- House of Representatives (NL)
- Canadian Hemophilia Society (CA)
- Sanquin (NL)
- Europdonor Foundation (NL)
- Emma Kinderziekenhuis (NL)
- Erasmus MC - Sophia Children’s Hospital (NL)
- Amsterdam University Medical Centers (NL)
- Amsterdam University of Applied Sciences (NL)
- University of Amsterdam (NL)
Publication Details
- Journal
- JMIR Human Factors
- Published
- 2024-09-03
- DOI
- https://doi.org/10.2196/48359
- Primary Topic
- Health Literacy and Information Accessibility
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- CSL Behring
- Nederlandse Organisatie voor Wetenschappelijk Onderzoek
- Swedish Orphan Biovitrum