From loquacious to reticent: understanding patient health information communication to guide consumer health IT design.

BACKGROUND AND SIGNIFICANCE: It is increasingly recognized that some patients self-manage in the context of social networks rather than alone. Consumer health information technology (IT) designed to support socially embedded self-management must be responsive to patients' everyday communication practices. There is an opportunity to improve consumer health IT design by explicating how patients currently leverage social media to support health information communication. OBJECTIVE: The objective of this study was to determine types of health information communication patterns that typify Facebook users with chronic health conditions to guide consumer health IT design. MATERIALS AND METHODS: Seven hundred participants with type 2 diabetes were recruited through a commercial survey access panel. Cluster analysis was used to identify distinct approaches to health information communication both on and off Facebook. Analysis of variance (ANOVA) methods were used to identify demographic and behavioral differences among profiles. Secondary analysis of qualitative interviews ( n = 25) and analysis of open-ended survey questions were conducted to understand participant rationales for each profile. RESULTS: Our analysis yielded 7 distinct health information communication profiles. Five of 7 profiles had consistent patterns both on and off Facebook, while the remaining 2 demonstrated distinct practices, with no health information communication on Facebook but some off Facebook. One profile was distinct from all others in both health information communication practices and demographic composition. Rationales for following specific health information communication practices were categorized under 6 themes: altruism, instrumental support, social support, privacy and stigma, convenience, and Facebook knowledge. CONCLUSION: Facebook has been widely adopted for health information communication; This study demonstrates that Facebook has been widely adopted for health information communication. It also shows that the ways in which patients communicate health information on and off Facebook are diverse.

Mechanisms of Communicating Health Information Through Facebook: Implications for Consumer Health Information Technology Design.

BACKGROUND: Consumer health information technology (IT) solutions are designed to support patient health management and have the ability to facilitate patients' health information communication with their social networks. However, there is a need for consumer health IT solutions to align with patients' health management preferences for increased adoption of the technology. It may be possible to gain an understanding of patients' needs for consumer health IT supporting their health information communication with social networks by explicating how they have adopted and adapted social networking sites, such as Facebook, for this purpose. OBJECTIVE: Our aim was to characterize patients' use of all communication mechanisms within Facebook for health information communication to provide insight into how consumer health IT solutions may be better designed to meet patients' communication needs and preferences. METHODS: This study analyzed data about Facebook communication mechanisms use from a larger, three-phase, sequential, mixed-methods study. We report here on the results of the study's first phase: qualitative interviews (N=25). Participants were over 18, used Facebook, were residents or citizens of the United States, spoke English, and had a diagnosis consistent with type 2 diabetes. Participants were recruited through Facebook groups and pages. Participant interviews were conducted via Skype or telephone between July and September 2014. Data analysis was grounded in qualitative content analysis and the initial coding framework was informed by the findings of a previous study. RESULTS: Participants' rationales for the use or disuse of a particular Facebook mechanism to communicate health information reflected six broad themes: (1) characteristics and circumstances of the person, (2) characteristics and circumstances of the relationship, (3) structure and composition of the social network, (4) content of the information, (5) communication purpose, and (6) attributes of the technology. CONCLUSIONS: The results of this study showed that participants consider multiple factors when choosing a Facebook mechanism for health information communication. Factors included what information they intended to share, what they were trying to accomplish, attributes of technology, and attributes and communication practices of their social networks. There is a need for consumer health IT that allows for a range of choices to suit the intersectionality of participants' rationales. Technology that better meets patients' needs may lead to better self-management of health conditions, and therefore, improve overall health outcomes.

Beyond traditional advertisements: leveraging Facebook's social structures for research recruitment.

BACKGROUND: Obtaining access to a demographically and geographically diverse sample for health-related research can be costly and time consuming. Previous studies have reported mixed results regarding the potential of using social media-based advertisements to overcome these challenges. OBJECTIVE: Our aim was to develop and assess the feasibility, benefits, and challenges of recruiting for research studies related to consumer health information technology (IT) by leveraging the social structures embedded in the social networking platform, Facebook. METHODS: Two recruitment strategies that involved direct communication with existing Facebook groups and pages were developed and implemented in two distinct populations. The first recruitment strategy involved posting a survey link directly to consenting groups and pages and was used to recruit Filipino-Americans to a study assessing the perceptions, use of, and preferences for consumer health IT. This study took place between August and December 2013. The second recruitment strategy targeted individuals with type 2 diabetes and involved creating a study-related Facebook group and asking administrators of other groups and pages to publicize our group to their members. Group members were then directly invited to participate in an online pre-study survey. This portion of a larger study to understand existing health management practices as a foundation for consumer health IT design took place between May and June 2014. In executing both recruitment strategies, efforts were made to establish trust and transparency. Recruitment rate, cost, content of interaction, and characteristics of the sample obtained were used to assess the recruitment methods. RESULTS: The two recruitment methods yielded 87 and 79 complete responses, respectively. The first recruitment method yielded a rate of study completion proportionate to that of the rate of posts made, whereas recruitment successes of the second recruitment method seemed to follow directly from the actions of a subset of administrators. Excluding personnel time, the first recruitment method resulted in no direct costs, and the second recruitment method resulted in a total direct cost of US $118.17. Messages, posts, and comments received using both recruitment strategies reflected ten themes, including appreciation, assistance, clarification, concerns, encouragement, health information, interest, promotion, solicitations, and support. Both recruitment methods produced mixed results regarding sample representativeness with respect to characteristics such as gender, race, and ethnicity. CONCLUSIONS: The results of the study demonstrate that leveraging the social structures of Facebook for health-related research was feasible for obtaining small samples appropriate for qualitative research but not for obtaining large samples needed for quantitative research. The content of interactions with members of the target population prompted ethical deliberations concerning suitable target communities and appropriate boundaries between researchers and participants. Widespread replication of this method would benefit from a broad discussion among researchers, social media users, social media companies, and experts in research ethics to address appropriate protocols for such interactions.