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

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
DOI 10.1111/j.1468-0009.2012.00662.xPMC PMC3460203
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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.

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.

Model-written summary. Check it against the paper before relying on it.

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.

Claims the paper makes

0 of 100 cited sources checked · 0 supported · 0 flagged

  • Findingown data

    The review identified seven domains through which online patients' experiences could affect health.

    “We identified seven domains through which online patients’ experiences could affect health.”
    • Also stated in: § Final Review and Revision · plain
      “Finally, we agreed on the seven “domains” of our conceptual map of the potential health effects of online patients’ experience.”
    Quote in the paperSubstantial claim
  • Findingnone given

    Each of the seven identified domains has the potential for positive and negative impacts.

    “Each has the potential for positive and negative impacts.”
    Quote in the paperSubstantial claim
  • Interpretationreasoning

    Reading and hearing others' accounts of their own experiences of health and illness will remain a key feature of e-health.

    “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.”
    Quote in the paperSubstantial claim
  • Premisecitation

    The widespread use of social media transcends educational achievement, race and ethnicity, and level of health care access.

    “The widespread use of social media transcends educational achievement, race and ethnicity, and level of health care access (Chou et al. 2009).”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites Chou et al. 2009

      Not checked in the free run.

  • Premisecitation

    A study of parents of children with a genetic condition found that the most trusted and valued source of information was not doctors but other parents in online communities.

    “A study of parents of children with a genetic condition (Schaffer, Kuczynski, and Skinner 2008) found that the most trusted and valued source of information was not doctors but the other parents in the online communities, whose own extensive Internet searches were combined with a personal stake.”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites Schaffer, Kuczynski, and Skinner 2008

      Not checked in the free run.

  • May combine two claims. 49
  • Classified as probably not a substantial claim. 54

  • May combine two claims.

    Findingown data

    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.

    “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.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingown data

    In the final search and discussions at a specialists' workshop, the importance of visual presentations of online patients' experience was identified.

    “In our final search for relevant papers and discussions of the findings at a specialists’ workshop at a Health Informatics conference, we identified the importance of the visual presentations of online patients’ experience.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingown data

    The user group emphasized that the Internet's unregulated nature means that all sources of information might be seen as having equivalent status, regardless of their trustworthiness.

    “Our user group emphasized that the Internet's unregulated nature means that all sources of information might be seen as having equivalent status, regardless of their trustworthiness.”
    Quote in the paperNot a substantial claim

  • Classified as probably not a substantial claim. May combine two claims.

    Findingown data

    The user panel considered the process of emotional support important, saying that it meant you knew you were not alone because hearing about other people's experiences gave you a sense of being supported.

    “Our user panel considered this process important, saying that it meant that you knew you “were not alone” because hearing about other people's experiences gave you a sense of “being supported.””
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingown data

    The user panel endorsed the idea that overreliance on virtual support can lead to wasted time browsing and posting on the web, preventing people from benefiting from social contact in their own locality.

    “Our user panel endorsed the idea that overreliance on “virtual support” can lead to wasted time browsing and posting on the web, preventing people from benefiting from social contact in their own locality.”
    Quote in the paperNot a substantial claim

  • Classified as probably not a substantial claim. May combine two claims.

    Findingreasoning

    Overidentifying with other people's experiences could lead to an overuse of health services, which the public panel referred to as hypochondria heaven for anxious patients.

    “This could lead to an overuse of health services, which our public panel referred to as “hypochondria heaven” for anxious patients.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S4 (based). May combine two claims.

    Premisenone given

    The field of online patients' experiences is new and has no agreed-on theoretical and methodological basis.

    “The role of information based on online patients’ experience is a new field with no agreed-on theoretical and methodological basis.”
    • Also stated in: § Context · plain
      “Yet this is a new field with no agreement on a theoretical and methodological basis.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    In 2011 many more people visited websites without themselves posting than contributed.

    “In 2011 many more people visited websites without themselves posting (an activity described somewhat pejoratively as “lurking”) than contributed (Fox 2011; Preece, Nonnecke, and Andrews 2004).”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites Fox 2011

      Not checked in the free run.

    • cites Preece, Nonnecke, and Andrews 2004

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S4 (based).

    Premisenone given

    Little is known about the effect on people's health outcomes of 24/7 access to other people's experiences online.

    “Although these developments are increasingly seen as encouraging, little is known about the effect on people's health outcomes of the 24/7 access (which can also be anywhere on any device) to other people's experiences online.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S4 (based).

    Interpretationreasoning

    The immediacy of contact with people all over the world could provide reassurance and support during unsocial hours.

    “The immediacy of contact with people all over the world could provide reassurance and support during unsocial hours; the anonymous environment may permit people to raise embarrassing questions that many would find hard to discuss face to face.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationnone given

    Online communities and websites, available worldwide at any time, both supplement and in some ways surpass face-to-face groups.

    “Online communities and websites, available worldwide at any time, both supplement and (in some ways) surpass face-to-face groups.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationnone given

    Hearing or reading about other patients' experiences has the potential to affect decision making, one's sense of isolation or support, and adjustment to the illness or health condition.

    “Hearing or reading about other patients’ experiences has the potential to affect decision making, one's sense of isolation or support, and adjustment to the illness or health condition.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S4 (based).

    Interpretationnone given

    Online access to other people's experiences could also provoke concerns and anxieties that may be difficult to deal with in the middle of the night.

    “But it could also provoke concerns and anxieties that may be difficult to deal with in the middle of the night.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationreasoning

    The act of participating in the creation of health information (e.g., through blogging and contributing to social networking on health topics) influences patients' experiences and has implications for understanding their role in their own health care management and information.

    “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.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Premisecitation

    An indisputably transformational feature of the Internet is that contact and support are now available at any hour of the day or night and that those with a home computer can access an extraordinary range of resources for private and anonymous communications with others in real time.

    “An indisputably transformational feature of the Internet is that contact and support are now available at any hour of the day or night and that those with a home computer can access an extraordinary range of resources for private and anonymous communications with others in real time (Buchanan and Coulson 2007).”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites Buchanan and Coulson 2007

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S4 (based).

    Interpretationnone given

    The anonymous environment may permit people to raise embarrassing questions that many would find hard to discuss face to face.

    “The immediacy of contact with people all over the world could provide reassurance and support during unsocial hours; the anonymous environment may permit people to raise embarrassing questions that many would find hard to discuss face to face.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S2 (checkable), S4 (based).

    Premisenone given

    The features that make firsthand accounts compelling, and the mechanisms through which they operate, remain poorly understood.

    “The features that make firsthand accounts compelling, and the mechanisms through which they operate, remain poorly understood.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationcitation

    Other people's experiences can help allay fears and boost confidence.

    “Such information can help allay fears, boost confidence (Lowe et al. 2009), and suggest or confirm one's own and doctors’ diagnoses by comparing symptoms and their effects with one's own experiences and knowledge (Armstrong and Powell 2009).”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites Lowe et al. 2009

      Not checked in the free run.

  • Classified as probably not a substantial claim. May combine two claims.

    Premisereasoning

    In this review, there was no set of theories or even defined social or health programs to identify and evaluate because the field is too new.

    “However, in our case, there was no set of theories or even defined social or health programs to identify and evaluate; the field is too new.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Interpretationcitation

    Simple, practical tips on how to manage problems encountered in everyday life, coping strategies that others use, and advice based on what has worked for others are highly valued for their pragmatism and because they are easy to understand.

    “Simple, practical tips on how to manage problems encountered in everyday life, coping strategies that others use, and advice based on what has worked for others are highly valued for their pragmatism (Sandaunet 2008; van Uden-Kraan et al. 2008) and because they are easy to understand (Steffen 1997).”
    Quote in the paperNot a substantial claim0 of 3 sources checked
    • cites Sandaunet 2008

      Not checked in the free run.

    • cites van Uden-Kraan et al. 2008

      Not checked in the free run.

    • cites Steffen 1997

      Not checked in the free run.

  • Classified as probably not a substantial claim.

    Study design and conductown data

    To check the interpretation of the literature, a user panel was convened.

    “To check our interpretation of the literature, we convened a user panel.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductown data

    The review continued reading until data saturation was reached and then further refined the results after testing them with expert colleagues and a public user panel.

    “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.”
    • Also stated in: § Literature Review · plain
      “A constant comparison between reading and the working table identified the point at which no new ideas were emerging and we were confident that we had achieved “saturation.””
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductown data

    The respondents were selected by means of a questionnaire to ensure that the panel would be representative of a cross section of the community (gender, age, occupation, and ethnic group) and would be composed of those who had used the Internet for health information in a variety of ways and for a variety of health conditions.

    “We selected the respondents by means of a questionnaire to ensure that the panel would be representative of a cross section of the community (gender, age, occupation, and ethnic group) and would be composed of those who had used the Internet for heath information in a variety of ways (websites, forums, blogs) and for a variety of health conditions (either for themselves or on behalf of family and”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductown data

    The review used no formal quality appraisal tools but considered papers in relation to their relevance and rigor.

    “Although we used no formal quality appraisal tools, we considered papers in relation to theirRelevance: Does the research address the topic and enable us to add to, adapt, or amend the initial matrix developed in step 1c?Rigor: Does the research support the conclusions drawn from it by the researchers or the reviewers?”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationcitation

    Hearing about how others have coped may change one's orientation to the illness and offer a framework for managing the uncertainties.

    “Hearing about how others have coped may change one's orientation to the illness (Zufferey and Schulz 2009) and offer a framework for managing the uncertainties.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites Zufferey and Schulz 2009

      Not checked in the free run.

  • May combine two claims.

    Interpretationcitation

    Other people's accounts can provide contextual information about causes and consequences and help people understand what may happen.

    “Similarly, other people's accounts of a range of different treatments and outcomes can make information more relevant (Broemer 2004; Sillence et al. 2007), provide contextual information about causes and consequences, and help people understand what may happen (Lowe et al. 2009; Rothman and Kiviniemi 1999).”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites Lowe et al. 2009

      Not checked in the free run.

    • cites Rothman and Kiviniemi 1999

      Not checked in the free run.

  • May combine two claims.

    Interpretationreasoning

    Web-based feedback sites, populated with comments from other patients, may describe comparable experiences and can be a highly efficient way to identify pressing concerns, such as for patient safety, as well as for longer-term quality improvement.

    “In comparison, web-based feedback sites, populated with comments from other patients, may describe comparable experiences and can be a highly efficient way to identify pressing concerns, such as for patient safety, as well as for longer-term quality improvement.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationcitation

    Hearing about other people's decisions can help them recognize that a decision must be made, define what the range of options might be, and clarify the alternatives.

    “However, hearing about other people's decisions can help them recognize that a decision must be made (e.g., about a treatment), define what the range of options might be, and clarify the alternatives (e.g., in relation to treatment, lifestyle, and attitude) (Bruce et al. 2005; Entwistle et al. 2011).”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites Bruce et al. 2005

      Not checked in the free run.

    • cites Entwistle et al. 2011

      Not checked in the free run.

  • May combine two claims.

    Interpretationcitation

    Hearing about other people's experiences can help one to appraise options in light of the potential outcomes, so that decisions are tempered and might result in less regret because the content contains social and emotional information not usually available elsewhere.

    “Hearing about other people's experiences can help one to appraise options in light of the potential outcomes, so that decisions are tempered (Bruce et al. 2005) and might result in less regret because the content contains social and emotional information not usually available elsewhere (Lowe et al. 2009; Sharf 1997).”
    Quote in the paperSubstantial claim0 of 3 sources checked
    • cites Bruce et al. 2005

      Not checked in the free run.

    • cites Lowe et al. 2009

      Not checked in the free run.

    • cites Sharf 1997

      Not checked in the free run.

  • May combine two claims.

    Interpretationcitation

    If the experiences presented are not typical, are inaccurate and biased, or are populated with the experiences of unusual people, or if the sites are sponsored by vested interests or open to commercial exploitation, the information may be distorted, perhaps leading to worse decisions if people are unaware.

    “Learning through other people's accounts of their experiences can be memorable because they are vivid (Etchegary et al. 2008; Taylor and Thompson 1982), but if the experiences presented are not typical (Entwistle et al. 2011), are inaccurate and biased, or are populated with the experiences of unusual people, or if the sites are sponsored by vested interests or open to commercial exploitation (Ent”
    Quote in the paperSubstantial claim0 of 3 sources checked
    • cites Entwistle et al. 2011

      Not checked in the free run.

    • cites Leydon et al. 2000

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    • cites Winterbottom et al. 2008

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    Emotional empowerment is the process through which information is exchanged, emotional support is encountered, and recognition is gained through sharing experiences.

    “In their study of participation in online support groups, van Uden-Kraan and colleagues (2008) describe “emotional empowerment” as the process through which information is exchanged, emotional support is encountered, and recognition is gained through sharing experiences.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites van Uden-Kraan et al. 2008

      Not checked in the free run.

  • May combine two claims.

    Interpretationcitation

    Conflicting information from people with different experiences and information overload can cause confusion (including false reassurance) and anxiety, undermining otherwise good, instinctive decision making, although accessing information through the Internet may allow the information flow to be controlled.

    “Conflicting information from people with different experiences and “information overload” can cause confusion (including false reassurance) and anxiety, undermining otherwise good, instinctive decision making, although accessing information through the Internet may allow the information flow to be controlled (Lowe et al. 2009).”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites Lowe et al. 2009

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    Illness very often brings a sense of isolation and of dislocation from the past and from the future.

    “Illness very often brings a sense of isolation and of dislocation from the past (Williams 1984) and from the future (Bury 1982).”
    Quote in the paperSubstantial claim0 of 2 sources checked
    • cites Williams 1984

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    • cites Bury 1982

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  • May combine two claims.

    Interpretationcitation

    Hearing about others' experiences can induce feelings of compassion, so that one becomes less self-absorbed and gains a better perspective.

    “Hearing about others’ experiences can induce feelings of compassion, so that one becomes less self-absorbed and gains a better perspective (Radley 1999).”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites Radley 1999

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  • May combine two claims.

    Interpretationcitation

    Depending on their content, others' experiences may arouse feelings of anxiety and confusion and can lead to unrealistic expectations, false hopes, or even despair, fear, guilt, anger, and inadequacy if others seem to be managing better.

    “In contrast, depending on their content, others’ experiences may arouse feelings of anxiety and confusion and can lead to unrealistic expectations, false hopes, or even despair, fear, guilt, anger, and inadequacy if others seem to be managing better.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Interpretationreasoning

    How one responds to other people's experiences depends greatly on one's mood at the time of the encounter and, if it goes badly, can reinforce one's vulnerability or feelings of inferiority.

    “Consequently, how one responds to other people's experiences depends greatly on one's mood at the time of the encounter and, if it goes badly, can reinforce one's vulnerability or feelings of inferiority.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Interpretationcitation

    Knowing that others have coped with illness can bring hope and reassurance concerning what may happen and greater feelings of control and confidence that one can manage the situation, succeed, and cope with emotions through emotion-focused coping.

    “Knowing that others have coped with illness can bring hope and reassurance concerning what may happen (Powell and Clarke 2006) and greater feelings of control and confidence that one can manage the situation (Adair et al. 2006), succeed (Buchanan and Coulson 2007), and cope with emotions through “emotion-focused coping” (Carlick and Biley 2004; Moos and Schaefer 1984).”
    Quote in the paperSubstantial claim0 of 3 sources checked
    • cites Powell and Clarke 2006

      Not checked in the free run.

    • cites Adair et al. 2006

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    • cites Buchanan and Coulson 2007

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  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Interpretationreasoning

    Online support may even help sustain real-world relationships by providing another sounding board and emotional outlet for health concerns.

    “Online support may even help sustain “real-world” relationships by providing another sounding board and emotional outlet for health concerns.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationcitation

    Online and off-line relationships need not be mutually exclusive, and many people keep in touch with friends via the Internet, and people who meet on the Internet can become real-life friends (proximity and willingness to eschew anonymity permitting).

    “Online and off-line relationships need not, of course, be mutually exclusive, and many people keep in touch with friends via the Internet, and people who meet on the Internet can become real-life friends (proximity and willingness to eschew anonymity permitting) (e.g., see Chapple and Ziebland 2011).”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites Chapple and Ziebland 2011

      Not checked in the free run.

  • May combine two claims.

    Interpretationnone given

    Learning about how others cope may help patients become socialized into a new role or forge a sense of identity in which a new diagnosis is integrated but may not be dominant.

    “Learning about how others cope may help patients become socialized into a new role (e.g., as a patient or the spouse or parent of a patient) or forge a sense of identity in which a new diagnosis is integrated but may not be dominant.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Interpretationnone given

    In an online forum, the usual requirement for conversational give-and-take need not apply: while a person may choose to write in extensive detail about his experiences, his audience can quickly browse through the account, break off at any point, or go back and review a section in more detail.

    “In an online forum, though, the usual requirement for conversational give-and-take need not apply: while a person may choose to write in extensive detail about his experiences, his audience can quickly browse through the account, break off at any point, or go back and review a section in more detail.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationreasoning

    Learning through other people's experiences may sometimes prevent unnecessary consultations; other people's descriptions of their own symptoms and consultations may reassure the worried well that they do not have the health problem they feared.

    “Learning through other people's experiences may sometimes prevent unnecessary consultations; other people's descriptions of their own symptoms and consultations may reassure the “worried well” that they do not have the health problem they feared.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationnone given

    People who deal with things in other ways may question their own perspective or develop a sense of shame or stigma.

    “In addition, people who deal with things in other ways (e.g., those who have different values or have made different decisions) may question their own perspective or develop a sense of shame or stigma.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationcitation

    People often look online to follow up on the advice given by health professionals or to seek validation for their own interpretations or feelings.

    “People often look online to “follow up” on the advice given by health professionals or to seek validation for their own interpretations or feelings (Fredriksen, Moland, and Sundby 2008; Ziebland 2004;Ziebland et al. 2004).”
    Quote in the paperNot a substantial claim0 of 3 sources checked
    • cites Fredriksen, Moland, and Sundby 2008

      Not checked in the free run.

    • cites Ziebland 2004

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    • cites Ziebland et al. 2004

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  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    By enabling people to refine and personalize all the information they receive (characterized as The Daily Me), they will rarely be exposed to any ideas that challenge their own.

    “A related idea, drawing on the work of Nicholas Negroponte (1995), is that by enabling people to refine and personalize all the information they receive (characterized as “The Daily Me”), they will rarely be exposed to any ideas that challenge their own.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites Negroponte 1995

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  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Interpretationnone given

    People may learn that those who can pay, who have different health insurance, or who live in a country or state with another health system may seem to have benefited from different treatment options.

    “Conversely, they may learn that those who can pay, who have different health insurance, or who live in a country or state with another health system may seem to have benefited from different treatment options.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Interpretationnone given

    People could use the information they gain from others to manipulate the consultation, perhaps by exaggerating symptoms that they have learned will prompt clinicians to react in preferred ways.

    “Another concern is that people could use the information they gain from others to manipulate the consultation, perhaps by exaggerating symptoms that they have learned will prompt clinicians to react in preferred ways.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationcitation

    At a macro level, by finding out how stigmatized conditions affect others or through restricted access to care and support, patients and the public may become more aware of inequalities and injustices or even become active in fostering changes in social attitudes or a more equitable provision of care.

    “At a macro level, by finding out how stigmatized conditions affect others or through restricted access to care and support, patients and the public may become more aware of inequalities and injustices or even become active in fostering changes in social attitudes or a more equitable provision of care (Dumit 2005).”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites Dumit 2005

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Interpretationcitation

    An engaging narrative can immerse the audience in the account and thereby transfer information in a particularly effective manner.

    “An engaging narrative can immerse the audience in the account and thereby transfer information in a particularly effective manner (de Wit, Das, and Vet 2008; Green and Brock 2000).”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites de Wit, Das, and Vet 2008

      Not checked in the free run.

    • cites Green and Brock 2000

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Interpretationnone given

    Those who take the time to provide feedback about their own experiences may feel frustrated and angry if this does not lead to improvements.

    “Those who take the time to provide feedback about their own experiences may feel frustrated and angry if this does not lead to improvements.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationreasoning

    Finding out about other people's experiences of poor care could be discouraging and increase people's anxiety about treatment in situations in which they have little choice or control.

    “Finding out about other people's experiences of poor care could be discouraging and increase people's anxiety about treatment in situations in which they have little choice or control.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    From childhood onward, stories provide a powerful, palatable, and memorable way of learning about the world.

    “From childhood onward, stories provide a powerful, palatable, and memorable way of learning about the world (Bettelheim 1976).”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites Bettelheim 1976

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Interpretationnone given

    People could also become worried about their health by overidentifying with other people's experiences.

    “People could also become worried about their health by overidentifying with other people's experiences.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    People rarely present themselves as naive users of any information.

    “As Entwistle and colleagues (2011) observed, people rarely present themselves as naive users of any information”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites Entwistle and colleagues (2011)

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    A plethora of options may prevent one from being able to make and live with a choice.

    “Schwartz (2004) proposes that far from helping, a plethora of options may prevent one from being able to make (and live with) a choice.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites Schwartz (2004)

      Not checked in the free run.

  • May combine two claims.

    Interpretationreasoning

    Hearing how others describe what has happened to them adds to the richness of the vocabulary and can help construct one's own account.

    “Hearing how others describe what has happened to them (as well as what has happened) adds to the richness of the vocabulary and can help construct our own account.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S2 (checkable), S4 (based). May combine two claims.

    Interpretationreasoning

    The Internet is inherently visual and the ability to post and access images of people dealing with health issues may be an important, rarely explored feature of health experiences and the Internet.

    “We suggest that the Internet is inherently visual and that the ability to post and access images of people dealing with health issues may be another important, albeit rarely explored, feature of health experiences and the Internet.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    People's accounts of their illness can be viewed as factions, a meld of facts and fiction that weave interpretation and presentation into the account of what actually happened.

    “Bury (2001) recommends our viewing people's accounts of their illness as “factions,” a meld of facts and fiction that weave interpretation and presentation into the account of what actually happened.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites Bury (2001)

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S4 (based).

    Interpretationnone given

    The progress of a disease or of a recovery can be powerfully communicated through a series of static images or video recordings.

    “The progress of a disease or of a recovery can be powerfully communicated through a series of static images or video recordings.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationcitation

    Being able to tell one's story well may help people give a concise and relevant account in a clinical setting, explain salient points to professionals, and elicit understanding, support, and affirmation from friends, family, and wider audiences.

    “being able to tell their story well may help people develop an appropriate professional interest by giving a concise and relevant account in a clinical setting, help them explain salient points to professionals (Zufferey and Schulz 2009), and elicit understanding, support, and affirmation from friends, family, and wider audiences via the media and web blogs.”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites Zufferey and Schulz 2009

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    The process of constructing a coherent story may help the healing process.

    “Frank (1995) and Pennebaker and Seagal (1999) suggested that even the very process of constructing a coherent story may help the healing process.”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites Frank (1995)

      Not checked in the free run.

    • cites Pennebaker and Seagal (1999)

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Interpretationnone given

    It may be intimidating for some people to have very articulate people tell their story.

    “It may also be intimidating for some people to have very articulate people tell their story.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S2 (checkable).

    Interpretationreasoning

    Stories can be seen as a conduit for memorable and meaningful information and support.

    “We can see stories as a conduit for memorable and meaningful information and support.”
    Quote in the paperNot a substantial claim

  • Classified as probably not a substantial claim. May combine two claims.

    Premisecitation

    Images in a variety of forms are increasingly used in health care communication and can be powerful ways of communicating important messages.

    “Williams and Cameron (2009) argued that images—in a variety of forms—are increasingly used in health care communication and can be powerful ways of communicating important messages.”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites Williams and Cameron (2009)

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    Some weight loss blogs feature a weekly picture of feet on bathroom scales, adding evidence to bloggers' claims about progress.

    “Sometimes these blogs feature a weekly picture of feet standing on a set of bathroom scales, adding evidence to the bloggers’ claims about their progress (Oostveen 2011).”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites Oostveen 2011

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    Hardey's review of video postings of eczema on YouTube found more than one thousand clips, some with more than 2 million viewers.

    “Hardey (2011) reviewed video postings of eczema on YouTube and found more than one thousand clips, some of which had more than 2 million viewers.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites Hardey (2011)

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    The field of health education and health promotion was quick to see the potential of the Internet to deliver efficient, tailored advice to help people lose weight, get more exercise, give up smoking, practice safe sex, tackle depression, and control diabetes or high blood pressure.

    “The field of health education and health promotion was quick to see the potential of the Internet to deliver efficient, tailored advice (Cline and Haynes 2000) to help people lose weight, get more exercise, give up smoking, practice safe sex (Rothman et al. 1999), tackle depression, and control diabetes or high blood pressure.”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites Cline and Haynes 2000

      Not checked in the free run.

    • cites Rothman et al. 1999

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    Through public blogging, people may feel accountable to an audience and, being aware their progress is watched, may feel motivated to adhere to their program.

    “In her study of weight loss bloggers, Oostveen (2011) suggests that through public blogging, people may feel accountable to an audience, that by being aware that their progress is being watched, they may feel motivated to adhere to their program.”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites Oostveen (2011)

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Interpretationreasoning

    Like stories, imagery can be powerful and memorable and has both positive and negative consequences.

    “Like stories, imagery can be powerful and memorable; like stories, this has both positive and negative consequences.”
    Quote in the paperNot a substantial claim

  • Classified as probably not a substantial claim.

    Premisecitation

    Narratives are less susceptible to defensive processing through which people distance themselves from health education messages.

    “and they believe that this is because narratives are less susceptible to the defensive processing through which people distance themselves from health education messages.”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites De Wit, Das, and Vet (2008)

      Not checked in the free run.

  • May combine two claims.

    Interpretationcitation

    Reflecting on what they have posted may make people feel proud and in control, or embarrassed and regretful.

    “Reflecting on what they have posted may make people feel proud and in control, or embarrassed and regretful.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Interpretationreasoning

    Some sites contain messages that contradict or challenge medical advice and suggest or reinforce unhealthy behaviors.

    “Some sites contain messages that contradict or challenge medical advice and suggest or reinforce unhealthy behaviors.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Interpretationnone given

    Online PEx may help people develop better relationships.

    “and develop better relationships.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Interpretationcitation

    The processes through which PEx may operate may differ depending on whether people are reading about others' experiences or writing about their own.

    “The literature suggests that the processes may differ depending on, for example, whether people are reading about others’ experiences or writing about their own.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Interpretationnone given

    Online PEx may raise anxiety.

    “They may raise anxiety.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Premisecitation

    Several studies have examined the content of online pro-anorexia support groups; people with diabetes can learn from forums about nonprescribed ways to misuse insulin for weight loss.

    “Several studies have examined the content of online pro-anorexia support groups (Gavin, Rodham, and Poyer 2008); people with diabetes can learn from forums about nonprescribed ways to use (misuse) their insulin for weight loss.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites Gavin, Rodham, and Poyer 2008

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S4 (based).

    Interpretationnone given

    The profusion of patients' experiences online has dramatically influenced the health information field.

    “The profusion of patients’ experiences online has dramatically influenced the health information field.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationnone given

    Some online forums promote unsafe sexual practices and provide advice on how to most effectively contract HIV.

    “Some online forums promote unsafe sexual practices and even provide advice on how to most effectively contract HIV.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Interpretationnone given

    Overengagement with online communities can be detrimental to life off-line.

    “Overengagement with online communities can be detrimental to life “off-line.””
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationreasoning

    Those who help create health content may be participating in a different way from those who consume rather than post their own contributions, yet the widespread use of social media and blogs is already blurring these boundaries.

    “Those who help create health content may be participating in a different way from those who consume rather than post their own contributions, yet the widespread use of social media and blogs is already blurring these boundaries.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based).

    Interpretationnone given

    The powerful and memorable delivery of a personal experience could be used for a deliberately misleading or exploitative message.

    “The powerful and memorable delivery of a personal experience could be used for a deliberately misleading or exploitative message.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S4 (based). May combine two claims.

    Interpretationnone given

    Online PEx may improve health literacy and understanding of susceptibility to illness.

    “improve their health literacy and understanding of susceptibility to illness”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    Health choices cannot be made without information.

    “Health choices cannot be made without information (Ubel, Jepson, and Baron 2001)”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites Ubel, Jepson, and Baron 2001

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Interpretationnone given

    Online PEx may improve people's own illness narration.

    “improve their own illness narration”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationnone given

    Online PEx may help people make better health care choices and alert them to health issues.

    “Online PEx may help people make better health care choices and alert them to health issues”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Interpretationnone given

    Online PEx may help people access more appropriate services.

    “access more appropriate services”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S2 (checkable).

    Interpretationnone given

    Our review sheds some light on the features that make first hand accounts compelling and the processes through which they operate.

    “Our review sheds some light on the features that make first hand accounts compelling and the processes through which they operate.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S4 (based). May combine two claims.

    Interpretationnone given

    The act of participating in the creation of health content is affecting patients' experiences and has implications for understanding patients' role in health care management and information.

    “But the act of participating in the creation of health content (e.g., through blogging and social networking) is also affecting patients’ experiences and has implications for our understanding of patients’ role in health care management and information.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Interpretationnone given

    By gathering and comparing their experiences online, patients and their families may conclude that they need radically different services.

    “by gathering and comparing their experiences online, patients and their families may conclude that they need radically different services.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Interpretationnone given

    The Internet is increasingly used as a vehicle for transparency, safety, and choice in health services.

    “The Internet is increasingly used as a vehicle for transparency, safety, and choice in health services.”
    Quote in the paperNot a substantial claim
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

Claims other papers make about this one

Each is checked against this paper’s own text: does it say what the citing paper says it does?

  • Qualitative data suggest that users find personal experiences helpful in reaching decisions, but there are less data available about whether and how such narratives impact emotional or clinical outcomes.

    “Qualitative data suggest that users find such “personal experiences” helpful in reaching decisions [55], but there are less data available about whether and how such narratives impact emotional or clinical outcomes [56].”

    From Web-Based Interventions for Behavior Change and Self-Management: Potential, Pitfalls, and Progress (2012) · cites this paper as [56]

Cites

Flagged first, then by citations

1 of the 88 references couldn’t be matched to a known paper.

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.

Cited by

Sorted by citations

Related

Authors
ZIEBLAND, S., & WYKE, S.
Affiliations
University of Glasgow (GB)
ORCID
WYKE, SALLY
Venue
The Milbank Quarterly
Publisher
Wiley
Published
2012-06
Volume
90
Issue
2
Pages
219-249
ISSN
  • 0887-378X (ISSN-L)
  • 1468-0009
DOI
10.1111/j.1468-0009.2012.00662.x
PMC
PMC3460203
OpenAlex
W2139185994
Semantic Scholar
5ca93bbce4da0435793e19f8b6c5c7170e9b2bb6
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
Licence
onlinelibrary.wiley.com/termsAndConditions#vor (vor, 17 d)
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

About these checks

Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.

Claims read by deepseek-v4.1-flash under definition version 3 (extract-v3) on 2026-10-10.

Classified by jev-1.13-20260917 (gold-guideline-v0.2) on 2026-10-10.

Statistics and arithmetic are recomputed, not judged.

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