Abstract Number: PB0619
Meeting: ISTH 2021 Congress
Background: Currently, data on patient-relevant health outcomes is collected to enable personalized treatment and shared decision-making for people with hemophilia. However, information is fragmented across hospital information systems, digital treatment diaries and questionnaire portals, hampering integrated care. We intend to develop a nationwide digital personal health record for patients to manage and share relevant medical information, for which perspectives of people with hemophilia and healthcare professionals are crucial.
Aims: To assess attitudes towards, and expectations, requirements and concerns of a personal health record for hemophilia care in the Netherlands, by people with hemophilia, their caretakers and healthcare professionals.
Methods: Nineteen adult and pediatric patients with hemophilia A or B and their caretakers, as well as 18 multidisciplinary healthcare professionals (e.g. (pediatric) hematologists, nurses, pharmacists, psychologists and physiotherapists) participated in this qualitative, semi-structured interview study. Perspectives of patients and healthcare professionals were compared.
Results: Most patients using prophylaxis or frequent on-demand therapy and most healthcare professionals have a positive attitude regarding a personal health record. Patients not using prophylaxis consider it less beneficial for personal use.
All participants do advocate for its development. They expect it would enhance patient safety, by facilitating the digital exchange of health data and enabling proxy access. Patients especially anticipate its positive effects on patient empowerment, by managing health data and integrated access to digital apps. Healthcare professionals underline the importance of an up-to-date medication overview and unified display of patient-relevant health outcomes.
Participants expressed their concerns about privacy, interoperability, responsibility, ownership of data and its suitability for patients with few (digital) self-management skills.
Conclusions: People with hemophilia using prophylaxis or frequent on-demand therapy, their caretakers and healthcare professionals have a positive attitude towards a personal health record facilitating integrated hemophilia care and patient’s self-management. They raised important concerns that will be addressed in the tool we are currently developing.
To cite this abstract in AMA style:R Brands M, J Muis J, Driessens M, JM van der Meer F, Meijer S, de Jong M, Bellinck F, Goedhart G, G van der Bom J, H Cnossen M, Haverman L, Fijnvandraat K, C Gouw S. Patient and Healthcare Professional Perspectives on the Use of a Personal Health Record in Hemophilia Care: A Qualitative Study [abstract]. Res Pract Thromb Haemost. 2021; 5 (Suppl 2). https://abstracts.isth.org/abstract/patient-and-healthcare-professional-perspectives-on-the-use-of-a-personal-health-record-in-hemophilia-care-a-qualitative-study/. Accessed March 4, 2024.
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