Umeå University's logo

umu.sePublications
Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Negotiating privacy and responsibility in digital public health: a qualitative study of the social and ethical implications of peer-to-peer health data sharing
Umeå University, Faculty of Social Sciences, Department of Social Work.ORCID iD: 0000-0002-0427-7248
Umeå University, Faculty of Arts, Department of culture and media studies. Umeå University, Faculty of Social Sciences, Centre for Demographic and Ageing Research (CEDAR).ORCID iD: 0000-0002-8758-5704
School of Social Science, Södertörn University, Huddinge, Sweden.ORCID iD: 0000-0003-0108-4237
Umeå University, Faculty of Science and Technology, Department of Computing Science.ORCID iD: 0000-0002-8430-4241
2026 (English)In: Frontiers in Digital Health, E-ISSN 2673-253X, Vol. 8, article id 1748259Article in journal (Refereed) Published
Abstract [en]

Introduction: Peer-to-peer sharing of personal health data on social media is increasingly used as a strategy to support public health goals. Such sharing is often assumed to motivate individuals to adopt or maintain healthy behaviors. However, the social and ethical implications of sharing-based interventions remain insufficiently examined. This paper offers an empirical and theoretical contribution by foregrounding the socio-technical contexts of sharing and analyzing how sharing-based interventions may drive social change. Building on these insights, it also outlines ethical considerations for researchers and stakeholders.

Method: We conducted 22 semi-structured interviews with participants in a regional public health intervention in Sweden. Interviews focused on participants' experiences of receiving personal health data and their reflections on sharing such data on social media. Analysis was guided by reflexive thematic analysis and informed by theoretical perspectives on the socio-technical embeddedness of health data and sharing practices.

Results: Participants understood health data as both personal and communal. Although many expressed discomfort with disclosing sensitive health information online, the peer-to-peer sharing model fostered a perceived moral obligation to share data for collective benefit.

Discussion: The tension between personal boundaries and perceived communal obligations raises important ethical concerns, particularly when individuals feel pressured to share data they would prefer to keep private. Our findings underscore the need for ethical frameworks that address social pressures, consent, and the emotional dimensions of data sharing. To support sustainable and ethical public health practices, further qualitative research is essential—particularly to understand how individuals navigate obligations and risks in technology-mediated care, and how these dynamics shape values such as autonomy, well-being, and collective responsibility.

Place, publisher, year, edition, pages
Frontiers Media S.A., 2026. Vol. 8, article id 1748259
Keywords [en]
datafication, digital health, ethics - care ethics, health data, health information, peer-to-peer sharing, public health, social media
National Category
Health Care Service and Management, Health Policy and Services and Health Economy Ethics Security, Privacy and Cryptography Ethnology
Research subject
Ethnology
Identifiers
URN: urn:nbn:se:umu:diva-251433DOI: 10.3389/fdgth.2026.1748259ISI: 001734534500001PubMedID: 41958455Scopus ID: 2-s2.0-105041231809OAI: oai:DiVA.org:umu-251433DiVA, id: diva2:2048457
Part of project
STAR-C: Sustainable behaviour change for health supported by person-Tailored, Adaptive, Risk-aware digital Coaching in a social context , Forte, Swedish Research Council for Health, Working Life and Welfare
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2018–01461Available from: 2026-03-25 Created: 2026-03-25 Last updated: 2026-06-26Bibliographically approved

Open Access in DiVA

fulltext(240 kB)65 downloads
File information
File name FULLTEXT01.pdfFile size 240 kBChecksum SHA-512
2dca524e1f53d0e4292c657d2ba895fc09cd8ab91643323532e6ec90f001990cba60284dccc30ecd7e313cf462ab88a06db696aa9a1d4a991c4f71b9e3e783f9
Type fulltextMimetype application/pdf

Other links

Publisher's full textPubMedScopus

Authority records

Lindberg, JensLundgren, Anna SofiaLindgren, Helena

Search in DiVA

By author/editor
Lindberg, JensLundgren, Anna SofiaEriksson, MalinLindgren, Helena
By organisation
Department of Social WorkDepartment of culture and media studiesCentre for Demographic and Ageing Research (CEDAR)Department of Computing Science
In the same journal
Frontiers in Digital Health
Health Care Service and Management, Health Policy and Services and Health EconomyEthicsSecurity, Privacy and CryptographyEthnology

Search outside of DiVA

GoogleGoogle Scholar
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

doi
pubmed
urn-nbn

Altmetric score

doi
pubmed
urn-nbn
Total: 402 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf