Cited by 558Health Literacy and Information AccessibilitySocial Media in Health EducationMental Health and Patient Involvement

The DOI matches its Crossref record; 87 of the 88 references it cites were found in a registry or an index; none of the 100 sources its claims cite is checked for support yet.

Health and Illness in a Connected World: How Might Sharing Experiences on the Internet Affect People's Health?

Open access
ZIEBLAND, SUE, WYKE, SALLY·2012·The Milbank Quarterly

Abstract

Context: The use of the Internet for peer‐to‐peer connection has been one of its most dramatic and transformational features. Yet this is a new field with no agreement on a theoretical and methodological basis. The scientific base underpinning this activity needs strengthening, especially given the explosion of web resources that feature experiences posted by patients themselves. This review informs a National Institute for Health Research (NIHR) (UK) research program on the impact of online patients’ accounts of their experiences with health and health care, which includes the development and validation of a new e‐health impact questionnaire. Methods: We drew on realist review methods to conduct a conceptual review of literature in the social and health sciences. We developed a matrix to summarize the results, which we then distilled from a wide and diverse reading of the literature. We continued reading until we reached data saturation and then further refined the results after testing them with expert colleagues and a public user panel. Findings: We identified seven domains through which online patients’ experiences could affect health. Each has the potential for positive and negative impacts. Five of the identified domains (finding information, feeling supported, maintaining relationships with others, affecting behavior, and experiencing health services) are relatively well rehearsed, while two (learning to tell the story and visualizing disease) are less acknowledged but important features of online resources. Conclusions: The value of first‐person accounts, the appeal and memorability of stories, and the need to make contact with peers all strongly suggest that reading and hearing others’ accounts of their own experiences of health and illnesss will remain a key feature of e‐health. The act of participating in the creation of health information (e.g., through blogging and contributing to social networking on health topics) also influences patients’ experiences and has implications for our understanding of their role in their own health care management and information.

Overview

AI snapshot

Written from the paper’s full text.

TL;DR

This conceptual review maps seven domains through which online patients’ experiences may affect health, each with potential positive and negative impacts. It argues that first-person accounts and peer contact will remain central to e-health, while effects extend beyond conventional information or support outcomes.

Key findings

  • The review identified seven domains: finding information, feeling supported, maintaining relationships with others, experiencing health services, learning to tell the story, visualizing disease, and affecting behavior. Five are described as relatively well rehearsed, while two—learning to tell the story and visualizing disease—are less acknowledged but important.
  • The 2010 Pew Internet national survey of 3,000 U.S. respondents reported that one in four Internet users living with a chronic condition went online to find others with similar health concerns.
  • Examples cited include Hardey’s review of more than 1,000 YouTube eczema clips, some with more than 2 million viewers; Houston et al.’s finding that culturally appropriate DVDs of patients’ narratives improved blood pressure control among African Americans; and de Wit, Das, and Vet’s finding that intention to be vaccinated was higher when a personal narrative was presented.
  • Potential harms include anxiety, misleading or unrepresentative stories, overengagement reducing off-line contact, and reinforcement of unhealthy behaviors through pro-anorexia groups, insulin misuse forums, unsafe-sex advice, and suicide-related forums.

Methods

  • Conceptual review informed by realist review methods, conducted iteratively and collaboratively over six months in 2010. The authors searched social and health sciences literature with librarian assistance, snowballed from reference lists, used a matrix for data extraction, and continued until saturation; they used no formal quality appraisal tools but considered relevance and rigor.
  • A service user panel of 30 lay participants was recruited through Oxfordshire Primary Care Trust and selected by questionnaire to represent a cross-section by gender, age, occupation, and ethnic group, and by varied Internet health use. The panel met in four groups with rapporteurs and completed a final questionnaire.
  • Final review and revision followed a specialists’ workshop at a Health Informatics conference, which identified the importance of visual presentations of online patients’ experience. The authors then agreed on the seven domains of their conceptual map.

Limitations

  • Stated in the paper: the field is new with no agreed theoretical and methodological basis; there was no set of theories or defined social/health programs to identify and evaluate, so the realist review approach was adapted; no formal quality appraisal tools were used; little empirical work exists; the Internet changes constantly and defies conventional mapping; and little is known about how benefits and disadvantages are distributed across socioeconomic, age, and gender groups.
  • Evident from the text: this is a conceptual review rather than an empirical test of health outcomes, and its findings are a map of potential effects. The service user panel was a single UK lay panel of 30 participants, and the review relied on diverse literature plus expert and user validation rather than a systematic synthesis.

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Integrity signals

Registry

Crossref · 10.1111/j.1468-0009.2012.00662.x

Cites

87 of 87 references verified0 citation errors · 0 not checkable

Statistics

Nothing to recompute.

Verification

Claims the paper makes

78 Own interpretation · 70 Not checked yet · 6 Own result · 6 No basis given · 4 Own method

Verify all 100 references — free account

Show all 74 claims

  • It may state two separate claims as one. 49
  • Probably not a substantial claim. 54
90 of 90
  • The paper relies on this without support.

    Online resources are now established as a primary route to health information and support.

    “Online resources are now established as a primary route to health information and support.”
  • The paper relies on this without support.

    Relatively little is known about the effects of exposure to numerous, and sometimes conflicting, accounts of health experiences on the web.

    “yet we know relatively little about the effects (which could include incoherence and confusion) of exposure to numerous, and sometimes conflicting, accounts of health experiences on the web.”
  • The paper relies on this without support.

    The Internet changes constantly and defies conventional mapping.

    “The Internet changes constantly and defies conventional mapping.”
  • The paper relies on this without support.

    The domains identified in this review are grounded in a diverse literature rich in theory and will have some longevity.

    “because they are grounded in a diverse literature rich in theory, we trust that they will have some longevity.”
  • The paper relies on this without support.

    The benefits and disadvantages of online PEx are unlikely to be evenly distributed across socioeconomic, age, and gender groups.

    “The benefits and disadvantages are unlikely to be evenly distributed across socioeconomic, age, and gender groups”
  • The paper relies on this without support.

    The Internet is a fertile environment for advocacy and pressure groups and may attract those who would be reluctant to join a conventional voluntary association.

    “The Internet is a fertile environment for advocacy and pressure groups and may, by its very nature, attract those who would be reluctant to join a conventional voluntary association.”
6 of 6

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Citations

Cites

Show all 88 references

Research works printed but not linked: 1

  1. Mazanderani F. J.Powell andL.Locock.2011.Being Differently the Same in the Sharing of Health Experiences in Health Care. Paper presented at Online Patient Experience (PEx) and Its Role in e‐Health a workshop at the 25th Human Computer Interaction conference Northumbria University Newcastle‐upon‐Tyne July4–8.

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Metadata

Authors
ZIEBLAND, S., & WYKE, S.
Affiliations
University of Glasgow (GB)
Venue
The Milbank Quarterly
Publisher
Wiley
Published
2012-06
Volume
90
Issue
2
Pages
219-249
ISSN
  • 0887-378X (ISSN-L)
  • 1468-0009
OpenAlex
W2139185994
Cited by
554
References
88
Citations by year
2026: 48 · 2025: 29 · 2024: 38 · 2023: 24 · 2022: 39 · 2021: 43 · 2020: 61 · 2019: 52 · 2018: 45 · 2017: 42 · 2016: 46 · 2015: 35 · 2014: 28 · 2013: 20 · 2012: 3
FWCI
4.18
Type
journal article
Language
en
Open access
Locations
  • Milbank Quarterly (publishedVersion)
  • Europe PMC (PubMed Central) (publishedVersion)
  • PubMed Central (publishedVersion)
  • PubMed (publishedVersion)
  • ENLIGHTEN (Jurnal Bimbingan dan Konseling Islam) (submittedVersion)
  • Radboud Repository (Radboud University) (submittedVersion)
Funders
National Institute for Health and Care Research (RP-PG-0608-10147)
Topics
  • Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
  • Social Sciences › Health › Social Media in Health Education
  • Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
Keywords
peer support, health information seeking, e-health, patient blogs, social networking, illness narratives, health data visualization, patient participation in health care, health and illness
MeSH terms
United Kingdom, Health Services Research, Humans, Health Knowledge, Attitudes, Practice, Online Systems, Patients, Internet, Social Networking

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