Ill Literates or Illiterates? Investigating the eHealth Literacy of Users of Online Health Communities

Background Electronic health (eHealth) literacy is an important skill that allows patients to navigate intelligibly through the vast, often misleading Web-based world. Although eHealth literacy has been investigated in general and specific demographic populations, it has not yet been analyzed on users of online health communities (OHCs). Evidence shows that OHCs are important Web 2.0 applications for patients for managing their health, but at the same time, warnings have been expressed regarding the quality and relevance of shared information. No studies exist that investigate levels of eHealth literacy among users of OHCs and differences in eHealth literacy between different types of users. Objective The study aimed to investigate eHealth literacy across different types of users of OHCs based on a revised and extended eHealth literacy scale (eHEALS). Methods The study was based on a cross-sectional Web survey on a simple random sample of 15,000 registered users of the most popular general OHC in Slovenia. The final sample comprised 644 users of the studied OHC. An extended eHEALS (eHEALS-E) was tested with factor analytical procedures, whereas user types were identified with a hierarchical clustering algorithm. The research question was analyzed with analysis of variance (ANOVA) procedure and pairwise comparison tests. Results Factor analysis of the revised and extended eHEALS revealed six dimensions: awareness of sources, recognizing quality and meaning, understanding information, perceived efficiency, validating information, and being smart on the Net. The factor solution demonstrates a good fit to the data (root mean square error of approximation [RMSEA]=.059). The most developed dimension of eHEALS-E is awareness of different Internet sources (mean=3.98, standard deviation [SD]=0.61), whereas the least developed is understanding information (mean=3.11, SD=0.75). Clustering resulted in four user types: active help-seekers (48.3%, 311/644), lurkers (31.8%, 205/644), core relational users (16.9%, 109/644), and low-engaged users (3%, 19/644). Analysis of the research question showed statistically significant differences among user types across all six dimensions of eHEALS-E. Most notably, core relational users performed worse than lurkers on the validating information dimension (P=.01) and worse than active help-seekers on the being smart on the Net dimension (P=.05). Active help-seekers have the highest scores in all dimensions of the eHEALS-E, whereas low-engaged users have statistically significantly lower scores on all dimensions of the eHEALS-E in comparison with the other groups. Conclusions Those who are looking for advice and support in OHCs by making queries are well equipped with eHealth literacy skills to filter potential misinformation and detect bad advice. However, core relational users (who produce the most content in OHCs) have less-developed skills for cross-validating the information obtained and navigating successfully through the perils of the online world. Site managers should monitor their activity to avoid the spread of misinformation that might lead to unhealthy practices.

[1]  J. Gavin,et al.  The Presentation of “Pro-Anorexia” in Online Group Interactions , 2008, Qualitative health research.

[2]  Wim H van Harten,et al.  Empowerment of Cancer Survivors Through Information Technology: An Integrative Review , 2015, Journal of medical Internet research.

[3]  Robert F. DeVellis,et al.  Scale Development: Theory and Applications. , 1992 .

[4]  Ricardo Fabrino Mendonça,et al.  Racionalidade online: provimento de razões em discussões virtuais , 2016 .

[5]  Danny Weathers,et al.  Assessing Three Sources of Misresponse to Reversed Likert Items , 2008 .

[6]  H. Charles Romesburg,et al.  Cluster analysis for researchers , 1984 .

[7]  Dale Yeatts,et al.  Being an Informed Consumer of Health Information and Assessment of Electronic Health Literacy in a National Sample of Internet Users: Validity and Reliability of the e-HLS Instrument , 2016, Journal of medical Internet research.

[8]  J. Hoek,et al.  Posting Behaviour Patterns in an Online Smoking Cessation Social Network: Implications for Intervention Design and Development , 2014, PLoS ONE.

[9]  Kumanan Wilson,et al.  Social Media and the Empowering of Opponents of Medical Technologies: The Case of Anti-Vaccinationism , 2013, Journal of medical Internet research.

[10]  Michael Moorhouse,et al.  Construct Validity of the eHealth Literacy Scale (eHEALS) Among Two Adult Populations: A Rasch Analysis , 2016, JMIR public health and surveillance.

[11]  Colleen Young,et al.  Community Management That Works: How to Build and Sustain a Thriving Online Health Community , 2012, Journal of medical Internet research.

[12]  Erik Taal,et al.  Does the eHealth Literacy Scale (eHEALS) Measure What it Intends to Measure? Validation of a Dutch Version of the eHEALS in Two Adult Populations , 2011, Journal of medical Internet research.

[13]  Richard L Kravitz,et al.  The Prepared Patient: Information Seeking of Online Support Group Members Before Their Medical Appointments , 2012, Journal of health communication.

[14]  Siddhartha Nambiar,et al.  Towards evaluating and enhancing the reach of online health forums for smoking cessation , 2014, Network Modeling Analysis in Health Informatics and Bioinformatics.

[15]  E. Larson,et al.  Dissemination of health information through social networks: twitter and antibiotics. , 2010, American journal of infection control.

[16]  Howard Rheingold,et al.  Net Smart: How to Thrive Online , 2012 .

[17]  Gregor Petric,et al.  Perceived Quality of Conversations in Online Communities: Conceptual Framework, Scale Development, and Empirical Validation , 2014, Cyberpsychology Behav. Soc. Netw..

[18]  W. Pratt,et al.  Managing the Personal Side of Health: How Patient Expertise Differs from the Expertise of Clinicians , 2011, Journal of medical Internet research.

[19]  Hyun Jung Oh,et al.  The Effect of Computer-Mediated Social Support in Online Communities on Patient Empowerment and Doctor–Patient Communication , 2012, Health communication.

[20]  Gregor Petrič,et al.  Exploring the benefits and challenges of health professionals' participation in online health communities: Emergence of (dis)empowerment processes and outcomes , 2017, Int. J. Medical Informatics.

[21]  T. Friede,et al.  Sources of Information and Behavioral Patterns in Online Health Forums: Observational Study , 2014, Journal of medical Internet research.

[22]  Gül Seçkin Informational and decisional empowerment in online health support communities: initial psychometric validation of the Cyber Info-Decisional Empowerment Scale (CIDES) and preliminary data from administration of the scale , 2011, Supportive Care in Cancer.

[23]  SeonYoon Chung,et al.  Testing Reliability and Validity of the eHealth Literacy Scale (eHEALS) for Older Adults Recruited Online , 2015, Computers, informatics, nursing : CIN.

[24]  Rachelle Buchbinder,et al.  Conceptualising health literacy from the patient perspective. , 2010, Patient education and counseling.

[25]  Susan Stewart Loane,et al.  Empowered and Knowledgeable Health Consumers: The Impact of Online Support Groups on the Doctor–Patient Relationship , 2014 .

[26]  Karen Hambly,et al.  What is the Profile of Individuals Joining the KNEEguru Online Health Community? A Cross-Sectional Mixed-Methods Study , 2016, Journal of medical Internet research.

[27]  C. V. van Uden-Kraan,et al.  Self-Reported Differences in Empowerment Between Lurkers and Posters in Online Patient Support Groups , 2008, Journal of medical Internet research.

[28]  Wenhong Chen,et al.  More than search? Informational and participatory eHealth behaviors , 2014, Comput. Hum. Behav..

[29]  Cameron D. Norman,et al.  eHealth Literacy: Essential Skills for Consumer Health in a Networked World , 2006, Journal of medical Internet research.

[30]  Uwe Matzat,et al.  Academic communication and Internet Discussion Groups: transfer of information or creation of social contacts? , 2004, Soc. Networks.

[31]  Neil S. Coulson,et al.  Empowering processes in online support groups among people living with HIV/AIDS: A comparative analysis of 'lurkers' and 'posters' , 2010, Comput. Hum. Behav..

[32]  Sue Ziebland,et al.  Measuring the effects of online health information: Scale validation for the e-Health Impact Questionnaire. , 2015, Patient education and counseling.

[33]  N. Coulson,et al.  An investigation into the empowerment effects of using online support groups and how this affects health professional/patient communication. , 2011, Patient education and counseling.

[34]  R. Buchbinder,et al.  Critical appraisal of health literacy indices revealed variable underlying constructs, narrow content and psychometric weaknesses. , 2011, Journal of clinical epidemiology.

[35]  D. Nutbeam The evolving concept of health literacy. , 2008, Social science & medicine.

[36]  Xiaoqian Jiang,et al.  Lessons Learned for Online Health Community Moderator Roles: A Mixed-Methods Study of Moderators Resigning From WebMD Communities , 2016, Journal of medical Internet research.

[37]  Todd Graham,et al.  Discursive Equality and Everyday Talk Online: The Impact of "Superparticipants" , 2014, J. Comput. Mediat. Commun..

[38]  Esther Brainin,et al.  eHealth Literacy: Extending the Digital Divide to the Realm of Health Information , 2012, Journal of medical Internet research.

[39]  K. Griffiths,et al.  From Help-Seekers to Influential Users: A Systematic Review of Participation Styles in Online Health Communities , 2015, Journal of medical Internet research.

[40]  Jihoon Kim,et al.  Personas in online health communities , 2016, J. Biomed. Informatics.

[41]  Jacob Cohen,et al.  A power primer. , 1992, Psychological bulletin.

[42]  Jina Huh,et al.  Website Sharing in Online Health Communities: A Descriptive Analysis , 2016, Journal of medical Internet research.

[43]  J. Suler The Online Disinhibition Effect , 2004, Cyberpsychology, Behavior, and Social Networking.

[44]  Kent Nakamoto,et al.  Patient behavior and the benefits of artificial intelligence: the perils of "dangerous" literacy and illusory patient empowerment. , 2013, Patient education and counseling.

[45]  Hye-Jin Paek,et al.  Using Adolescent eHealth Literacy To Weigh Trust in Commercial Web Sites , 2011, Journal of Advertising Research.

[46]  Susana Peinado,et al.  The Health Literacy Skills Framework , 2012, Journal of health communication.

[47]  K. Bibbins-Domingo,et al.  Relationship Between Literacy, Knowledge, Self-Care Behaviors, and Heart Failure-Related Quality of Life Among Patients With Heart Failure , 2011, Journal of General Internal Medicine.

[48]  Peter R. Harris,et al.  How do patients evaluate and make use of online health information? , 2007, Social science & medicine.

[49]  Cameron D. Norman eHealth Literacy 2.0: Problems and Opportunities With an Evolving Concept , 2011, Journal of medical Internet research.

[50]  John Suler,et al.  Fostering empowerment in online support groups , 2008, Comput. Hum. Behav..

[51]  Eli Pariser,et al.  The Filter Bubble: What the Internet Is Hiding from You , 2011 .

[52]  Peter E.D. Love,et al.  Credibility of information in online communities , 2015 .

[53]  S. Ziebland,et al.  Health and Illness in a Connected World: How Might Sharing Experiences on the Internet Affect People's Health? , 2012, The Milbank quarterly.

[54]  Jina Huh,et al.  Answers to Health Questions: Internet Search Results Versus Online Health Community Responses , 2016, Journal of medical Internet research.

[55]  Lena Griebel,et al.  Contemporary eHealth Literacy Research - An Overview with Focus on Germany , 2015, PAHI.

[56]  Steven L. Johnson,et al.  Open media or echo chamber: the use of links in audience discussions on the Facebook Pages of partisan news organizations , 2016 .

[57]  E. Bernstam,et al.  Accuracy and self correction of information received from an internet breast cancer list: content analysis , 2006, BMJ : British Medical Journal.

[58]  Paul Michael Di Gangi,et al.  Online health communities: An assessment of the influence of participation on patient empowerment outcomes , 2013, Inf. Technol. People.

[59]  Nancy D Berkman,et al.  Measuring Health Literacy: A Pilot Study of a New Skills-Based Instrument , 2010, Journal of health communication.

[60]  Tao Wang,et al.  Patient value co-creation in online health communities , 2015 .

[61]  Stefan Huber,et al.  The Concept of eHealth Literacy and Its Measurement , 2014, J. Media Psychol. Theor. Methods Appl..

[62]  Yves Rosseel,et al.  lavaan: An R Package for Structural Equation Modeling , 2012 .

[63]  Esther Brainin,et al.  The dimensionality of health literacy and eHealth literacy , 2015 .

[64]  Gregor Petric,et al.  Differences in intrapersonal and interactional empowerment between lurkers and posters in health-related online support communities , 2014, Comput. Hum. Behav..

[65]  Katja Lozar Manfreda,et al.  The effect of email invitation elements on response rate in a web survey within an online community , 2016, Comput. Hum. Behav..

[66]  Erin Willis Patients’ self-efficacy within online health communities: facilitating chronic disease self-management behaviors through peer education , 2016, Health communication.

[67]  Ray Jones,et al.  Using Metrics to Describe the Participative Stances of Members Within Discussion Forums , 2011, Journal of medical Internet research.

[68]  Cameron D. Norman,et al.  eHEALS: The eHealth Literacy Scale , 2006, Journal of medical Internet research.

[69]  K. Oka,et al.  Associations of eHealth Literacy With Health Behavior Among Adult Internet Users , 2016, Journal of medical Internet research.