ArticleHaemophilia : the official journal of the World Federation of Hemophilia2025
People With Haemophilia as Data Coordinators: An Analysis of the Ethics and Feasibility of Self-Management With Personal Health Records.
Article in Haemophilia : the official journal of the World Federation of Hemophilia, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
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Who cites it
1 citing paper in PubMed.
- People With Haemophilia as Data Coordinators: An Analysis of the Ethics and Feasibility of Self-Management With Personal Health Records.Haemophilia : the official journal of the World Federation of Hemophilia · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
Abstract
backgroundPeople with haemophilia perform various self-management tasks, supported by multiple health apps. Personal health records will enable individuals to access and add health information from different institutions in a single digital tool, providing an integrated overview of data. Later, individuals will also be able to share their data with health care providers and relatives. This creates a new role for users: Coordinator of data exchange.
objectiveTo analyze if and how personal health records contribute to self-management, with a particular emphasis on the role of coordinating data exchange.
methodsWe applied various interpretations of self-management to the promises of personal health records to identify what goals it intends to achieve. We then assessed various skills and responsibilities that are required from users to work with personal health records. Last, we analyzed potential scenarios of the coordination of data exchange.
resultsPersonal health records promise to support both compliant self-management (i.e., managing care according to medical regimens) and concordant self-management (i.e., managing care according to personal values and goals). Which of these forms is promoted depends on the goal of data coordinating tasks. The chosen design of the data sharing feature may impact the usability and accessibility of personal health records for a wide group of users.
conclusionWhat form of self-management is promoted by personal health records needs to be more clearly defined. A participatory design strategy can ensure that the design of coordinating data exchange matches individuals' and health care providers' needs.
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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.