Accepted for/Published in: JMIR Human Factors
Date Submitted: Apr 20, 2023
Open Peer Review Period: Apr 20, 2023 - Jun 15, 2023
Date Accepted: Jun 28, 2024
(closed for review but you can still tweet)
Towards Personalized Care and Patient Empowerment: A Qualitative Study assessing Perspectives on a Personal Health Record in Hemophilia Care
ABSTRACT
Background:
To enable personalized treatment and shared decision-making in chronic care, relevant health information is collected. However, health information is often fragmented across hospital information systems, digital health apps, and questionnaire portals. This also pertains to hemophilia care, in which scattered information hampers integrated care. We intend to co-design a nationwide digital personal health record (PHR) for patients to help manage their health information. For this, user perspectives are crucial.
Objective:
We aimed to assess patients’ and healthcare providers’ perspectives regarding the use of a PHR in hemophilia care in the Netherlands, required functionalities, and expectations and concerns.
Methods:
In this semi-structured interview study, 19 pediatric and adult persons with hemophilia, parents, and women with other inherited bleeding disorders, and 18 healthcare providers working within and outside of hemophilia treatment centers participated. Perspectives of patients and providers were explored separately. As a semi-quantitative exploration, participants were asked to prioritize functionalities.
Results:
Participants expected a PHR would increase the transparency of health information, improve patients’ understanding of their illness, and help the coordination of care between healthcare providers and institutions. Prioritized functionalities included the integration of relevant health information and patient-entered data. Formulated expectations and concerns focused on four themes: usability, safety, inclusiveness, and implementation. While patients expressed worries over medicalization, providers were concerned about an increased workload.
Conclusions:
People with hemophilia, their parents, and healthcare 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.
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Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.