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Cited by 149Health Literacy and Information AccessibilitySocial Media in Health EducationPatient-Provider Communication in Healthcare

Perceived healthcare provider reactions to patient and caregiver use of online health communities

Open access
Rupert, Douglas J., Moultrie, Rebecca R., Read, Jennifer Gard, Amoozegar, Jacqueline B., Bornkessel, Alexandra S., O’Donoghue, Amie C., Sullivan, Helen W.·2014·Patient Education and Counseling
DOI 10.1016/j.pec.2014.05.015PMC PMC7325560
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Abstract

Objective Many Internet users seek health information through online health communities (OHCs) and other social media. Yet few studies assess how individuals use peer-generated health information, and many healthcare providers (HCPs) believe OHCs interfere with patient-provider relationships. This study explored how individuals use OHC content in clinical discussions and how HCPs react to it.Methods We conducted in-person and virtual focus groups with patients/caregivers who visited OHCs (n=89). A trained moderator asked about reasons for membership, sharing OHC content with providers, HCP reactions, and preferred roles for HCPs. Two researchers independently coded verbatim transcripts (NVivo 9.2) and conducted thematic response analysis.Results Participants described OHCs as supplementing information from HCPs, whom they perceived as too busy for detailed discussions. Almost all participants shared OHC content with HCPs, although only half cited OHCs as the source. Most HCPs reacted negatively to OHC content, making participants feel disempowered. Despite these reactions, participants continued to use OHCs, and most desired HCP feedback on the accuracy of OHC content.Conclusions Individuals do not use OHCs to circumvent HCPs but instead to gather more in-depth information.Practice implications HCPs should discuss OHC content with patients to help them avoid misinformation and make more informed decisions.

AI snapshot

Written from the paper’s full text.

TL;DR

In focus groups with 89 online health community (OHC) users, patients/caregivers described using OHCs to supplement provider information, and almost all shared OHC content with healthcare providers (HCPs), though only about half cited OHCs as the source. Most HCPs reacted negatively, but participants continued using OHCs and wanted HCP feedback on OHC accuracy.

Key findings

  • Participants joined OHCs mainly to learn about conditions/treatments and for emotional support; some cited dissatisfaction with HCP availability or answers. No participants reported having an HCP who referred them to an OHC.
  • Almost all participants used OHC information to guide HCP discussions; approximately half explicitly shared OHC content by citing posts or printouts, while the other half integrated it without citing OHCs as the source. Passive/light users were no more likely to use this indirect strategy than active/heavy users.
  • Many participants reported negative HCP reactions—discounting online information, discouraging online research, or positioning themselves as the primary source—which made some feel disempowered or chastised and led some to seek second opinions or change providers. However, no participants reported altering their OHC behavior because of negative HCP reactions; some reported positive reactions, especially multiple sclerosis participants in Group 10.
  • Most participants desired HCP feedback on the accuracy and relevance of OHC content and described OHCs as supplementing, not circumventing, HCPs. Participants reported visiting 77 distinct OHCs representing 50 medical conditions; on average they belonged to 2 OHCs (range 1–6) and visited them 11 times per month (range 1–40).

Methods

  • Ten focus groups (7 in-person, 2-hour sessions; 3 virtual, 1-hour live-chat sessions) were conducted September–December 2011 in Washington, DC; Raleigh, NC; Chicago, IL; and online, with 89 patients/caregivers who visited OHCs.
  • Eligibility required age 18+, English speaking, and reading/posting in an active OHC within the last month for oneself or a child/parent; participants were excluded if employed in healthcare or pharmaceutical industries or if OHC participation was part of their job. Group-specific criteria covered general, active/heavy, passive/light, recent fibromyalgia diagnosis, recent depression treatment decision, and a single multiple sclerosis community.
  • Verbatim transcripts and session notes were independently coded by two researchers in NVivo 9.2 using a three-tiered coding scheme; initial inter-coder reliability was 0.85 (percentage agreement), and thematic analysis identified patterns across groups and subpopulations.

Limitations

  • Stated: findings rely on self-reported attitudes/behaviors and reports of HCP reactions; focus groups with HCPs or observation of patient-provider interactions might yield different results. The purposive sample was limited in size, demographics, and geography, restricting generalizability. Other OHC topics limited deeper probing; focus group dynamics may have influenced responses; virtual sessions were shorter and typing skills likely affected response speed and volume.
  • Evident from the design: HCP reactions were not directly measured, no HCPs were sampled, and the cross-sectional focus group design cannot establish causality or track changes over time.

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

Integrity signals

Registry

Crossref · 10.1016/j.pec.2014.05.015

Cites

33 of 33 references verified0 citation errors · 0 not checkable

Statistics

Nothing to recompute.

Claims the paper makes

0 of 66 cited sources checked · 0 supported · 0 flagged

  • Findingown data

    Most participants described a desire to learn about their (or a loved one's) health condition and treatment options as a reason for joining online health communities.

    “First, most participants described a desire to learn about their (or a loved one’s) health condition and the treatment options.”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: Participants accurately recalled and reported their online health community use, sharing of online health community content with healthcare providers, and healthcare provider reactions.
  • Findingown data

    Other participants joined online health communities to seek emotional support from individuals dealing with similar diagnoses.

    “Second, other participants joined OHCs to seek emotional support from individuals dealing with similar diagnoses.”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: Participants accurately recalled and reported their online health community use, sharing of online health community content with healthcare providers, and healthcare provider reactions.
  • Findingown data

    In many cases, participants reported wanting to read about others' experiences managing the condition, especially if they had been recently diagnosed.

    “In many cases, participants reported wanting to read about others’ experiences managing the condition, especially if participants had been recently diagnosed.”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: Participants accurately recalled and reported their online health community use, sharing of online health community content with healthcare providers, and healthcare provider reactions.
  • Findingown data

    Several participants reported that dissatisfaction with their healthcare provider's ability to meet their information and emotional needs influenced their decision to join online health communities.

    “In particular, several participants reported that dissatisfaction with their HCP’s ability to meet these information and emotional needs influenced their decision to join OHCs.”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: Participants accurately recalled and reported their online health community use, sharing of online health community content with healthcare providers, and healthcare provider reactions.
  • Findingown data

    In these cases, participants described wanting to communicate with "like-minded people" who understood their emotional and clinical challenges.

    “In these cases, participants described wanting to communicate with “like-minded people” who understood their emotional and clinical challenges.”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: Participants accurately recalled and reported their online health community use, sharing of online health community content with healthcare providers, and healthcare provider reactions.
  • May combine two claims. 26
  • Classified as probably not a substantial claim. 36

  • May combine two claims.

    Findingown data

    Participants were most likely to visit online health communities hosted by Websites with multiple illness-specific forums and online health communities hosted by nonprofit organizations.

    “Participants were most likely to visit OHCs hosted by Websites with multiple illness-specific forums (e.g., WebMD.com) and OHCs hosted by nonprofit organizations (e.g., Crohn’s and Colitis Foundation of America).”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: Participants accurately recalled and reported their online health community use, sharing of online health community content with healthcare providers, and healthcare provider reactions.

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

    Findingown data

    A total of 89 individuals participated in the study.

    “A total of 89 individuals participated in the study (Table 2).”
    Quote in the paperNot a substantial claim

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

    Findingown data

    On average, participants visited their online health communities 11 times per month (range 1-40).

    “On average, participants belonged to two OHCs (range 1–6) and visited those OHCs 11 times per month (range 1–40 times per month).”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: Participants accurately recalled and reported their online health community use, sharing of online health community content with healthcare providers, and healthcare provider reactions.

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

    Findingown data

    On average, participants belonged to two online health communities (range 1-6).

    “On average, participants belonged to two OHCs (range 1–6) and visited those OHCs 11 times per month (range 1–40 times per month).”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: Participants accurately recalled and reported their online health community use, sharing of online health community content with healthcare providers, and healthcare provider reactions.

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

    Findingown data

    Minority races (30%) and individuals without college degrees (29%) were also represented.

    “However, minority races (30%) and individuals without college degrees (29%) were also represented.”
    Quote in the paperNot a substantial claim

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

    Findingown data

    Some participants reported visiting unaffiliated online health communities, online health communities hosted by insurance companies, and online health communities hosted by community forums.

    “However, others reported visiting unaffiliated OHCs (e.g., LivingWithFibro.org), OHCs hosted by insurance companies (e.g., BlueCross BlueShield), and OHCs hosted by community forums (e.g., MDJunction.com).”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: Participants accurately recalled and reported their online health community use, sharing of online health community content with healthcare providers, and healthcare provider reactions.

  • May combine two claims.

    Findingreasoning

    Consequently, these participants reported visiting online health communities to ask peers about non-clinical treatments, illness self-management, and emotional support.

    “Consequently, these participants reported visiting OHCs to ask peers about these topics.”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: Participants accurately recalled and reported their online health community use, sharing of online health community content with healthcare providers, and healthcare provider reactions.

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

    Findingown data

    The majority of participants were female (65%), Caucasian (70%), and had a college degree (70%).

    “The majority were female (65%), Caucasian (70%), and had a college degree (70%).”
    Quote in the paperNot a substantial claim

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

    Findingown data

    Participants reported visiting 77 distinct online health communities representing 50 different medical conditions.

    “Participants reported visiting 77 distinct OHCs representing 50 different medical conditions.”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: Participants accurately recalled and reported their online health community use, sharing of online health community content with healthcare providers, and healthcare provider reactions.

  • May combine two claims.

    Findingown data

    Participants used OHC content to identify discussion topics, inform questions, and inquire about alternative treatments in conversations with providers.

    “Participants explained that they used OHC content to identify discussion topics, inform questions, and inquire about alternative treatments in conversations with providers.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data
    § Abstract

    Almost all participants shared online health community content with healthcare providers, although only half cited online health communities as the source.

    “Almost all participants shared OHC content with HCPs, although only half cited OHCs as the source.”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: Participants accurately recalled and reported their online health community use, sharing of online health community content with healthcare providers, and healthcare provider reactions.

  • May combine two claims.

    Findingown data

    Despite many HCPs' negative reactions, almost all participants reported that providers are a valued information source.

    “Despite many HCPs’ negative reactions, almost all participants reported that providers are a valued information source and that they desire HCP feedback on the accuracy of OHC content.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Some participants reported that their HCPs reacted positively to OHC content and were supportive of participants' outside research.

    “Nevertheless, some participants reported that their HCPs reacted positively to OHC content and were supportive of participants’ outside research.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    Other participants described their healthcare providers as being unsupportive of alternative treatments and unwilling to spend time explaining the advantages and disadvantages of different treatment options.

    “Other participants described their HCPs as being unsupportive of alternative treatments and unwilling to spend time explaining the advantages and disadvantages of different treatment options.”
    Quote in the paperSubstantial claim
    • Rests on an assumption: Participants accurately recalled and reported their online health community use, sharing of online health community content with healthcare providers, and healthcare provider reactions.

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

    Premisecitation
    § 1. Introduction

    Approximately 25% of individuals turn to social media sites for health information.

    “Although search engines and medical Websites are the most popular starting points for online health information, approximately 25% of individuals also turn to social media sites.[1,3,9]”
    Quote in the paperNot a substantial claim0 of 3 sources checked
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    Premisecitation
    § 1. Introduction

    Online health communities are the most robust social media sources for peer-generated health information.

    “Online health communities (OHCs)—Internet-based discussion forums where individuals converse with one another about health topics—are the most robust social media sources for peer-generated health information.[9–12]”
    Quote in the paperNot a substantial claim0 of 4 sources checked
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    Premisecitation
    § 1. Introduction

    Individuals report that online health information improves their understanding of health issues, influences their treatment decisions, and leads them to share new information with healthcare providers.

    “Individuals report that such information improves their understanding of health issues, influences their treatment decisions, and leads them to share new information with their healthcare providers (HCPs).[5–8]”
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    Premisecitation
    § 1. Introduction

    70-80% of U.S. adult Internet users seek health information online about symptoms, treatments, medications, and medical costs for themselves or loved ones.

    “Research has demonstrated that the Internet is an increasingly popular source of health information for U.S. adults, with 70–80% of Internet users seeking information online about symptoms, treatments, medications, and medical costs for themselves or loved ones.[1–4]”
    Quote in the paperNot a substantial claim0 of 4 sources checked
    • cites [1] [1].Fox S, Duggan M. Health online 2013 [Internet]. Washington, DC: Pew Internet & American Life Project; 2013. [cited 2014 Jan 3]. Available from http://www.pewinternet.org/Reports/2013/Health-online.aspx. [Google Scholar]

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    Premisecitation

    This mix of concept-driven codes and data-driven codes has been documented as a rigorous and effective way to balance a study's conceptual framework with its raw data.

    “This mix of concept-driven codes and data-driven codes has been documented as a rigorous and effective way to balance a study’s conceptual framework with its raw data.[29–31]”
    Quote in the paperNot a substantial claim0 of 3 sources checked
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    Premisecitation
    § 2. Methods

    Some studies have documented the advantages and comparability of in-person and virtual focus group data.

    “Although virtual focus groups are a relatively new methodology, some studies have documented their advantages and the comparability of in-person and virtual focus group data.[24–28]”
    Quote in the paperSubstantial claim0 of 5 sources checked
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    Study design and conductnone given

    Two study team members independently reviewed and coded all transcripts in NVivo 9.2 qualitative analysis software.

    “During this process, two study team members independently reviewed and coded all transcripts in NVivo 9.2 qualitative analysis software.”
    Quote in the paperSubstantial claim

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

    Study design and conductnone given
    § 2. Methods

    The study was approved by ethics boards at RTI International and the U.S. Food and Drug Administration.

    “The study was approved by ethics boards at RTI International and the U.S. Food and Drug Administration.”
    Quote in the paperNot a substantial claim

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    Premisecitation
    § 1. Introduction

    Almost 20% of Internet users have participated in online health communities.

    “Almost 20% of Internet users have participated in OHCs, and individuals with chronic conditions or who serve as caregivers are even more likely to visit OHCs.[3]”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [3] [3].Fox S Peer-to-peer health care [Internet]. Washington, DC: Pew Internet & American Life Project; 2011. [cited 2014 Jan 3]. Available from http://www.pewinternet.org/Reports/2011/P2PHealthcare.aspx. [Google Scholar]

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    Interpretationcitation

    These demographics are consistent with previous research showing that females, Caucasians, and college graduates are more likely to seek health information online than other demographic groups.

    “These demographics are consistent with previous research showing that females, Caucasians, and college graduates are more likely to seek health information online than other demographic groups.[1]”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [1] [1].Fox S, Duggan M. Health online 2013 [Internet]. Washington, DC: Pew Internet & American Life Project; 2013. [cited 2014 Jan 3]. Available from http://www.pewinternet.org/Reports/2013/Health-online.aspx. [Google Scholar]

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    Premisecitation
    § 1. Introduction

    Individuals with chronic conditions or who serve as caregivers are more likely to visit online health communities than others.

    “Almost 20% of Internet users have participated in OHCs, and individuals with chronic conditions or who serve as caregivers are even more likely to visit OHCs.[3]”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [3] [3].Fox S Peer-to-peer health care [Internet]. Washington, DC: Pew Internet & American Life Project; 2011. [cited 2014 Jan 3]. Available from http://www.pewinternet.org/Reports/2011/P2PHealthcare.aspx. [Google Scholar]

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    Study design and conductnone given

    The research team reviewed all coding discrepancies and came to consensus on coding those passages.

    “The research team then reviewed all coding discrepancies and came to consensus on coding those passages.”
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    Premisecitation
    § 1. Introduction

    Individuals also share online health community experiences related to health insurance, healthcare provider satisfaction, and self-care activities.

    “Although treatments and medications are the most common OHC discussion topics, individuals also share experiences related to health insurance, HCP satisfaction, and self-care activities.[9, 13]”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [9] [9].Macias W, Lewis LS, Smith TL. Health-related message boards/chat rooms on the web: discussion content and implications for pharmaceutical sponsorships. J Health Commun. 2005;10:209–23. [DOI] [PubMed] [Google Scholar] source

      Not checked in the free run.

    • cites [13] [13].Rupert DJ, Gard JC, Amoozegar JB, Moultrie RR, Taylor OM, Aikin KJ, O’Donoghue AC, Sullivan HW. How do online health communities influence medical treatment decisions? Examining patient and caregiver experiences. Presented at the annual meeting for the American Public Health Association, San Francisco, CA; 2012. [Google Scholar]

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

    Study design and conductreasoning

    The coding strategy allowed the researchers to organize participant responses by topic while ensuring that the data-not research team assumptions-drove the coding.

    “This coding strategy allowed us to organize participant responses by topic while still ensuring that the data—not research team assumptions—drove the coding.”
    Quote in the paperNot a substantial claim

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    Premisecitation
    § 2. Methods

    Focus groups are ideal for rapidly examining individuals' perceptions and behaviors in depth, which would be difficult using quantitative methods.

    “Focus groups are ideal for rapidly examining individuals’ perceptions and behaviors in depth, which would be difficult using quantitative methods.[23]”
    Quote in the paperSubstantial claim0 of 1 sources checked
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    Premisecitation
    § 1. Introduction

    Treatments and medications are the most common online health community discussion topics.

    “Although treatments and medications are the most common OHC discussion topics, individuals also share experiences related to health insurance, HCP satisfaction, and self-care activities.[9, 13]”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [9] [9].Macias W, Lewis LS, Smith TL. Health-related message boards/chat rooms on the web: discussion content and implications for pharmaceutical sponsorships. J Health Commun. 2005;10:209–23. [DOI] [PubMed] [Google Scholar] source

      Not checked in the free run.

    • cites [13] [13].Rupert DJ, Gard JC, Amoozegar JB, Moultrie RR, Taylor OM, Aikin KJ, O’Donoghue AC, Sullivan HW. How do online health communities influence medical treatment decisions? Examining patient and caregiver experiences. Presented at the annual meeting for the American Public Health Association, San Francisco, CA; 2012. [Google Scholar]

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  • May combine two claims.

    Premisecitation
    § 1. Introduction

    Very few studies have examined how individuals use peer-generated health information or how healthcare providers perceive this content.

    “Very few studies have examined how individuals use peer-generated health information or how HCPs perceive this content, and the research in this area is limited by small sample sizes, poor response rates, and a lack of detail.[20–22]”
    Quote in the paperSubstantial claim0 of 3 sources checked
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    Study design and conductown data

    Initial inter-coder reliability was 0.85 (percentage agreement).

    “Initial inter-coder reliability was 0.85 (percentage agreement).”
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    Premisecitation
    § 1. Introduction

    Half of healthcare providers believe social media interferes with patient-provider communication.

    “The existing research suggests that half of HCPs believe social media interferes with patient-provider communication and that many providers are concerned that OHCs spread misinformation or are forums for complaining about providers.[20–21]”
    Quote in the paperSubstantial claim0 of 2 sources checked
    • cites [20] [20].Bosslet GT, Torke AM, Hickman SE, Terry CL, Helft PR. The patient-doctor relationship and online social networks: results of a national survey. J Gen InternMed. 2011;26:1168–74. [DOI] [PMC free article] [PubMed] [Google Scholar] source

      Not checked in the free run.

    • cites [21] [21].Modahl M, Tompsett L, Moorhead T. Doctors, patients, and social media [Internet]. Waltham, MA: QuantiaMD; 2011. [cited 2014 Jan 3]. Available from http://www.quantiamd.com/q-qcp/doctorspatientsocialmedia.pdf. [Google Scholar]

      Not checked in the free run.

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

    Premisecitation
    § 1. Introduction

    Many providers are concerned that online health communities spread misinformation or are forums for complaining about providers.

    “The existing research suggests that half of HCPs believe social media interferes with patient-provider communication and that many providers are concerned that OHCs spread misinformation or are forums for complaining about providers.[20–21]”
    Quote in the paperSubstantial claim0 of 2 sources checked
    • cites [20] [20].Bosslet GT, Torke AM, Hickman SE, Terry CL, Helft PR. The patient-doctor relationship and online social networks: results of a national survey. J Gen InternMed. 2011;26:1168–74. [DOI] [PMC free article] [PubMed] [Google Scholar] source

      Not checked in the free run.

    • cites [21] [21].Modahl M, Tompsett L, Moorhead T. Doctors, patients, and social media [Internet]. Waltham, MA: QuantiaMD; 2011. [cited 2014 Jan 3]. Available from http://www.quantiamd.com/q-qcp/doctorspatientsocialmedia.pdf. [Google Scholar]

      Not checked in the free run.

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

    Study design and conductnone given

    The virtual sessions were shorter than the in-person sessions, and virtual group participants' typing skills likely affected response speed and volume.

    “Finally, the virtual sessions were shorter than the in-person sessions, and virtual group participants’ typing skills likely affected response speed and volume.”
    Quote in the paperNot a substantial claim

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

    Premisecitation

    Previous research suggests that patients frequently misjudge the quality of online health information.

    “Previous research suggests that patients frequently misjudge the quality of online health information, and many HCPs fear that social media sites spread misinformation and eclipse provider input into individuals’ health decisions.[20–21,33]”
    Quote in the paperNot a substantial claim0 of 3 sources checked
    • cites [20] [20].Bosslet GT, Torke AM, Hickman SE, Terry CL, Helft PR. The patient-doctor relationship and online social networks: results of a national survey. J Gen InternMed. 2011;26:1168–74. [DOI] [PMC free article] [PubMed] [Google Scholar] source

      Not checked in the free run.

    • cites [21] [21].Modahl M, Tompsett L, Moorhead T. Doctors, patients, and social media [Internet]. Waltham, MA: QuantiaMD; 2011. [cited 2014 Jan 3]. Available from http://www.quantiamd.com/q-qcp/doctorspatientsocialmedia.pdf. [Google Scholar]

      Not checked in the free run.

    • cites [33] [33].Rhebergen MD, Lenderink AF, van Dijk FJ, Hulshof CT. Comparing the use of an online expert health network against common information sources to answer health questions. J Med Internet Res. 2012;14:e9. [DOI] [PMC free article] [PubMed] [Google Scholar] source

      Not checked in the free run.

  • May combine two claims.

    Interpretationown data

    Negative HCP reactions may jeopardize patient-provider relationships by obscuring where individuals find health information, discouraging discussion of OHC content, and in some cases, prompting individuals to seek other providers.

    “Negative HCP reactions may jeopardize patient-provider relationships by obscuring where individuals find health information, discouraging discussion of OHC content, and in some cases, prompting individuals to seek other providers.”
    Quote in the paperSubstantial claim

  • Classified as probably not a substantial claim.

    Premisecitation

    The shared decision making model suggests that HCPs can facilitate shared decisions by presenting treatment options, outlining the benefits and risks, and helping patients/caregivers to evaluate these options against their own goals and preferences.

    “The shared decision making model suggests that HCPs can facilitate shared decisions by presenting treatment options, outlining the benefits and risks, and helping patients/caregivers to evaluate these options against their own goals and preferences.[36–37]”
    Quote in the paperSubstantial claim0 of 2 sources checked
    • cites [36] [36].Informed Medical Decisions Foundation. Six steps of shared decision making (SDM) [Internet]. Boston, MA: Informed Medical Decisions Foundation; 2012. [cited 2014 Apr 22]. Available from http://www.slideshare.net/fimdm/six-steps-of-shared-decision-making. [Google Scholar]

      Not checked in the free run.

    • cites [37] [37].Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: What does it mean? (Or it takes at least two to tango). Soc Sci Med 1997;44:681–92. [DOI] [PubMed] [Google Scholar] source

      Not checked in the free run.

  • May combine two claims.

    Interpretationown data

    Patients and caregivers participate in OHCs to learn more about health conditions and to seek emotional support.

    “Patients and caregivers participate in OHCs to learn more about health conditions and to seek emotional support.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Interpretationreasoning

    OHCs may enable patients/caregivers to learn more about their options than they would in a clinical consultation alone while still serving as a springboard for patient-provider discussion and shared decision making.

    “Consequently, OHCs may enable patients/caregivers to learn more about their options than they would in a clinical consultation alone while still serving as a springboard for patient-provider discussion and shared decision making.”
    Quote in the paperSubstantial claim

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

    Study design and conductown data

    The study covered other OHC-related topics (e.g., privacy and credibility), which limited the ability to explore participant responses more deeply with probing questions.

    “Third, our study covered other OHC-related topics (e.g., privacy and credibility), which limited our ability to explore participant responses more deeply with probing questions.”
    Quote in the paperNot a substantial claim

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

    Premisecitation

    Many HCPs fear that social media sites spread misinformation and eclipse provider input into individuals' health decisions.

    “Previous research suggests that patients frequently misjudge the quality of online health information, and many HCPs fear that social media sites spread misinformation and eclipse provider input into individuals’ health decisions.[20–21,33]”
    Quote in the paperNot a substantial claim0 of 3 sources checked
    • cites [20] [20].Bosslet GT, Torke AM, Hickman SE, Terry CL, Helft PR. The patient-doctor relationship and online social networks: results of a national survey. J Gen InternMed. 2011;26:1168–74. [DOI] [PMC free article] [PubMed] [Google Scholar] source

      Not checked in the free run.

    • cites [21] [21].Modahl M, Tompsett L, Moorhead T. Doctors, patients, and social media [Internet]. Waltham, MA: QuantiaMD; 2011. [cited 2014 Jan 3]. Available from http://www.quantiamd.com/q-qcp/doctorspatientsocialmedia.pdf. [Google Scholar]

      Not checked in the free run.

    • cites [33] [33].Rhebergen MD, Lenderink AF, van Dijk FJ, Hulshof CT. Comparing the use of an online expert health network against common information sources to answer health questions. J Med Internet Res. 2012;14:e9. [DOI] [PMC free article] [PubMed] [Google Scholar] source

      Not checked in the free run.

  • May combine two claims.

    Interpretationown data
    § Abstract

    Individuals do not use online health communities to circumvent healthcare providers but instead to gather more in-depth information.

    “Individuals do not use OHCs to circumvent HCPs but instead to gather more in-depth information.”
    Quote in the paperSubstantial claim
    • Rests on an assumption: Participants accurately recalled and reported their online health community use, sharing of online health community content with healthcare providers, and healthcare provider reactions.
    • Rests on an assumption: The focus group setting did not unduly influence participants’ willingness to disclose negative experiences with healthcare providers.
    • Rests on an assumption: The non-probability purposive sample of online health community users is adequate for drawing general conclusions about individuals who use online health communities.

  • May combine two claims.

    Interpretationown data

    Patients and caregivers do not use OHCs to circumvent HCPs but instead to gather more in-depth information than HCPs typically provide.

    “They do not use OHCs to circumvent HCPs but instead to gather more in-depth information than HCPs typically provide.”
    Quote in the paperSubstantial claim

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

    Study design and conductnone given

    Data were collected in focus group settings, and participant responses may have been influenced by group dynamics.

    “Fourth, we collected data in focus group settings, and participant responses may have been influenced by group dynamics.”
    Quote in the paperNot a substantial claim

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

    Study design and conductreasoning

    The findings represent individuals' self-reported attitudes and behaviors and their reports of HCP reactions.

    “First, the findings represent individuals’ self-reported attitudes and behaviors and their reports of HCP reactions.”
    Quote in the paperSubstantial claim

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

    Interpretationreasoning

    By discussing the content that patients/caregivers share, providers can help them to avoid misinformation.

    “By discussing the content that patients/caregivers share, providers can help them to avoid misinformation.”
    Quote in the paperNot a substantial claim

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

    Interpretationreasoning

    Connecting individuals with trusted online resources may educate them about available treatment options and promote more informed decisions.

    “and connecting individuals with these resources may educate them about available treatment options and promote more informed decisions.”
    Quote in the paperSubstantial claim

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

    Premisecitation

    Providers are increasingly prescribing "information therapy" to their patients.

    “Providers are increasingly prescribing “information therapy” to their patients,[8]”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [8] [8].Keene N, Chesser A, Hart TA, Twumasi-Ankrah P, Bradham DD. Preliminary benefits of information therapy. J Prim Care Community Health. 2011;2:45–8. [DOI] [PubMed] [Google Scholar] source

      Not checked in the free run.

49 of 49

  • The paper relies on this without support.

    Participants accurately recalled and reported their online health community use, sharing of online health community content with healthcare providers, and healthcare provider reactions.

    “A trained moderator asked about reasons for membership, sharing OHC content with providers, HCP reactions, and preferred roles for HCPs.”

  • The paper relies on this without support.

    The focus group setting did not unduly influence participants’ willingness to disclose negative experiences with healthcare providers.

    “A trained moderator conducted each group using the tailored guide by asking questions, probing for details, and leading participants in an open discussion.”

  • The paper relies on this without support.

    The non-probability purposive sample of online health community users is adequate for drawing general conclusions about individuals who use online health communities.

    “We worked with three recruitment firms and one OHC to recruit a non-probability purposive sample for the study.”
3 of 3

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?

Self-check

Percentages, sums and reported differences re-computed from the paper’s own numbers.

  • Virtual-group college-graduate percentage is incorrect

    Minor

    Table 2 reports 6 college graduates among 24 virtual-group participants. That is 25%, not the reported 24%.

    Reported 24 · recomputed 25

1 of 1

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Authors
Rupert, D. J., Moultrie, R. R., Read, J. G., Amoozegar, J. B., Bornkessel, A. S., O’Donoghue, A. C., & Sullivan, H. W.
Affiliations
  • RTI International (US)
  • United States Food and Drug Administration (US)
Corresponding author
Rupert, Douglas J.
ORCID
Venue
Patient Education and Counseling
Publisher
Elsevier BV
Published
2014-09
Volume
96
Issue
3
Pages
320-326
ISSN
0738-3991 (ISSN-L)
DOI
10.1016/j.pec.2014.05.015
PMC
PMC7325560
OpenAlex
W1967928398
Semantic Scholar
7c1ddeeb128ee3ee003eb271da77032f2f111698
Cited by
149
References
33
Citations by year
2026: 7 · 2025: 11 · 2024: 10 · 2023: 12 · 2022: 18 · 2021: 18 · 2020: 29 · 2019: 11 · 2018: 17 · 2017: 11 · 2016: 5
FWCI
9.63
Type
journal article
Language
en
Open access
Licence
www.elsevier.com/tdm/userlicense/1.0/ (tdm)
Locations
  • Patient Education and Counseling (publishedVersion)
  • PubMed (publishedVersion)
  • PubMed Central (acceptedVersion)
Funders
  • National Institutes of Health (FD999999)
  • U.S. Public Health Service (HHSF223200910199G)
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 › Patient-Provider Communication in Healthcare
Keywords
online health communities, patient-provider relationship, social media health information, patient empowerment, misinformation, patient decision-making
MeSH terms
Adolescent, Adult, Aged, Communication, Female, Health Personnel, Humans, Male, Middle Aged, Patient Education as Topic, Perception, Professional-Patient Relations, Caregivers, Internet, Qualitative Research, Young Adult, Information Seeking Behavior, Social Media

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 2026-10-09.

Classified by jev-1.13-20260917 (gold-guideline-v0.2) on 2026-10-09.

Statistics and arithmetic are recomputed, not judged.

Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.

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