Outcomes in Child Health: Exploring the Use of Social Media to Engage Parents in Patient-Centered Outcomes Research

Abstract

BackgroundWith the rapid growth of technology and its improved accessibility globally, social media is gaining an increasingly important role in health care. Patients are frequently engaging with social media to access information, share content, and interact with others in online health communities. However, the use of social media as a stakeholder engagement strategy has been minimally explored, and effective methods for involving participants in research on the identification of patient-centered outcomes remain unknown.ObjectiveThe aim of this study was to evaluate the process of using social media to engage parents in identifying patient-centered outcomes, using acute respiratory infections in children as an example to gauge feasibility.MethodsWe conducted a process evaluation of a two-phase Web-based strategy to engage parents in research on patient-centered outcomes. In the first phase, we developed a website and study-specific Facebook and Twitter accounts to recruit parents to complete a Web-based survey identifying patient-centered outcomes. In the second phase, we used Facebook to host discussion with parents based on the survey results. The reach of social media as an engagement strategy and the characteristics of the population recruited were assessed.ResultsDuring the first phase, there were 5027 visits to the survey site, 110 participants completed the survey, 553 unique users visited the study website (675 visits), the Facebook page received 104 likes, and the Twitter account gained 52 followers over the 14-week study period. Most survey respondents identified Facebook (51.8%, 57/110) or a friend (45.5%, 50/110) as their source of referral. It was found that 70.0% (77/110) of respondents resided in Canada, in urban centers (92.7%, 102/110), and 88.2% (97/110) had a college or university degree or higher. The median year of birth was 1978 and 90.0% (99/110) were female. Most survey responses (88.2%, 97/110) were completed during the first month of the study. In the second phase, 4 parents participated in the discussion, our Facebook page gained 43 followers, and our posts reached 5866 users. Mirroring the first phase, most followers were female (79%, 34/43), between 35 and 44 years (49%, 21/43), and resided in Canada (98%, 42/43). User engagement was variable, with no clear patterns emerging in timing, topic, or type of post.ConclusionsMost participants were highly educated, urban dwelling, and female, limiting diversity and representativeness. The source of referral for most survey respondents was through Facebook or a friend, suggesting the importance of personal connections in the dissemination and uptake of information. User engagement with the Facebook-based discussion threads was inconsistent and difficult to initiate. Although there is substantial interest in the use of social media as a component of an effective patient engagement strategy, challenges regarding participant engagement, representativeness, obtaining buy-in, and resources required must be carefully considered.

Validation of a Questionnaire Developed to Evaluate a Pediatric eHealth Website for Parents

“…Almost all of our respondents declared that they performed health-related searches on the website. Our figures are larger than the ones reported by other authors [30,31], but we should consider that our respondents accessed our questionnaire from a pediatric health web, so they probably are Internet active users, and they probably are concerned with the health of their children.…”

Recruiting and retaining participants in e-Delphi surveys for core outcome set development: Evaluating the COMiT'ID study

“…A variety of recruitment methods was advisable, tailored to reach each stakeholder group. Nevertheless, social media platforms are perhaps most effective only if they are already established rather than being set up specifically for the COS development project, or if the target audience are known to be typical social media users [ 36 ]. Although there is substantial interest in the use of social media as a component of an effective patient recruitment strategy, challenges regarding engagement, representativeness, obtaining buy-in, and resources required have been noted.…”

Which outcomes are important to patients and families who have experienced paediatric acute respiratory illness? Findings from a mixed methods sequential exploratory study

“…A detailed account of the traffic to the survey and usability are available in our published process evaluation. 18 …”

“…One variable of interest in this study was the reach of social media as a recruitment strategy (reported elsewhere 18 ); therefore, the sample size was an outcome, rather than a predefined condition. To accommodate this, we did not define the number of participants a priori, instead allowing the detail that emerged from our data collection to guide the extent of recruitment.…”