Evidence map›Paper›PMID 40251656›Full record

ArticleArchives of public health = Archives belges de sante publique2025

Heterogeneity in willingness to share personal health information: a nationwide cluster analysis of 20,000 adults in Japan.

Miho Sassa, Akifumi Eguchi, Keiko Maruyama-Sakurai, Takanori Fujita, Yumi Kawamura, Takayuki Kawashima, Yuta Tanoue, Daisuke Yoneoka, Hiroaki Miyata, Takanori Yamashita and 2 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Archives of public health = Archives belges de sante publique, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

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.

2 · The registry

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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

12 authors.

Miho Sassa *Department of Global Health Policy, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan.
Akifumi Eguchi *Department of Health Policy and Management, School of Medicine, Keio University, Tokyo, Japan.
Keiko Maruyama-SakuraiDepartment of Health Policy and Management, School of Medicine, Keio University, Tokyo, Japan.
Takanori FujitaDepartment of Health Policy and Management, School of Medicine, Keio University, Tokyo, Japan.
Yumi KawamuraDepartment of Health Policy and Management, School of Medicine, Keio University, Tokyo, Japan.
Takayuki KawashimaDepartment of Health Policy and Management, School of Medicine, Keio University, Tokyo, Japan.
Yuta TanoueFaculty of Marine Technology, Tokyo University of Marine Science and Technology, Tokyo, Japan.
Daisuke YoneokaInfectious Disease Surveillance Center at the National Institute of Infectious Disease, Tokyo, Japan.
Hiroaki MiyataDepartment of Health Policy and Management, School of Medicine, Keio University, Tokyo, Japan.
Takanori YamashitaMedical Information Center, Kyushu University Hospital, Fukuoka, Japan.
Naoki NakashimaDepartment of Medical Informatics, Graduate School of Medical Sciences, Kyushu University, Fukuoka, Japan.
Shuhei NomuraDepartment of Health Policy and Management, School of Medicine, Keio University, Tokyo, Japan. s-nomura@keio.jp.

Funding

Ministry of Education, Culture, Sports, Science and Technology JP24H00663
6 · The paper itself

Abstract

backgroundWhile Personal Health Records (PHRs) are increasingly adopted globally, understanding public attitudes toward health information sharing remains crucial for successful implementation. This study investigated patterns in willingness to share personal health information among Japanese adults and identified factors influencing their sharing decisions.

methodsA nationwide cross-sectional web-based survey was conducted among 20,000 Japanese adults in December 2023. Participants were recruited through quota sampling based on age, gender, and prefecture population ratios from the 2020 National Census. The survey examined willingness to share personal health information with nine types of recipients (healthcare providers, ambulance crew, application providers, family members, local authorities, employers, pharmaceutical companies, government agencies, and research institutions), trust levels in these recipients, and 17 factors influencing sharing decisions across health benefits, convenience, economic incentives, social significance, information details, transparency, and privacy considerations. Clustering analysis using Uniform Manifold Approximation and Projection (UMAP) and Ordering Points to Identify the Clustering Structure (OPTICS) algorithms was performed to identify distinct patterns in sharing preferences.

resultsDespite low PHR familiarity (88.4% unfamiliar), participants showed willingness to share health information with healthcare providers (65.0%) and family members (65.6%), but expressed lower willingness toward government agencies (28.6%) and research institutions (28.8%). Five distinct clusters were identified: family-only sharers (3.9%), mixed preference sharers (47.9%), comprehensive sharers (12.9%), non-sharers (22.1%), and healthcare-selective sharers (13.2%). Trust levels were highest for family members (85.6%) and healthcare professionals (78.8%), while significantly lower for government agencies (44.2%). Higher education, income, and PHR familiarity were associated with greater willingness to share, while privacy and security concerns were universal across all clusters.

conclusionsThe heterogeneous patterns in health information sharing preferences suggest the need for tailored PHR implementation strategies that address varying privacy concerns and trust levels across different population segments. Success in PHR adoption requires balanced approaches to trust-building, robust data protection, and targeted communication strategies that acknowledge diverse user needs while promoting the benefits of health data sharing.

Indexed as

Cluster analysisDigital healthHealth information sharingJapanPersonal health records

Identifiers

PMID40251656
PMCPMC12007215

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

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.