The Search for Consumers of Web-Based Raw DNA Interpretation Services: Using Social Media to Target Hard-to-Reach Populations.

BACKGROUND: In recent years, there has been a proliferation of third-party Web-based services available to consumers to interpret raw DNA from direct-to-consumer genetic testing companies. Little is known about who uses these services and the downstream health implications. Identifying this hard-to-reach population of consumers for research raised questions about the most effective recruitment methods to undertake. Past studies have found that Web-based social media survey distribution can be cost-effective for targeting hard-to-reach populations, yet comparative efficacy information across platforms is limited. OBJECTIVE: The aim of this study was to identify the most effective Web-based strategies to identify and recruit the target population of direct-to-consumer genetic testing users who also made use of third-party interpretation services to analyze their raw genetic data. Web-based survey recruitment methods varying by social media platform and advertising method were compared in terms of cost-effectiveness and demographics of survey respondents. METHODS: A total of 5 Web-based survey distribution conditions were examined: 4 paid advertising services and 1 unpaid service. For the paid services, a 2x2 quasi-experimental design compared social media platforms (Facebook vs Twitter) and advertising tracking metrics (by click vs by conversion). The fifth unpaid comparison method consisted of study postings on the social media platform, Reddit, without any paid advertising. Links to identical Web-based versions of the study questionnaire were posted for 10 to 14 days for each of the distribution conditions, which allowed tracking the number of respondents that entered and completed the questionnaire by distribution condition. RESULTS: In total, 438 individuals were recruited to the study through all conditions. A nearly equivalent number of participants were recruited from paid campaigns on Facebook (n=159) and Twitter (n=167), with a smaller sample recruited on Reddit (n=112). Significantly more participants were recruited through conversion-tracking (n=222) than through click-tracking campaigns (n=104; Z=6.5, P<.001). Response rates were found to be partially driven by organic sharing of recruitment materials among social media users. Conversion tracking was more cost-effective than click tracking across paid social media platforms. Significant differences in terms of gender and age distributions were noted between the platforms and between the tracking metrics. CONCLUSIONS: Web-based recruitment methods were effective at recruiting participants from a hard-to-reach population in a short time frame. There were significant differences in the effectiveness of various paid advertising techniques. Recruitment through Web-based communities also appeared to perform adequately, yet it may be limited by the number of users accessible in open community groups. Future research should evaluate the impact of organic sharing of recruitment materials because this appeared to play a substantial role in the observed effectiveness of different methods.

Correction: The Search for Consumers of Web-Based Raw DNA Interpretation Services: Using Social Media to Target Hard-to-Reach Populations.

[This corrects the article DOI: 10.2196/12980.].

Utility of a virtual counselor (VICKY) to collect family health histories among vulnerable patient populations: A randomized controlled trial.

OBJECTIVES: This study is a randomized controlled trial comparing the efficacy of a virtual counselor (VICKY) to the My Family Health Portrait (MFHP) tool for collecting family health history (FHx). METHODS: A total of 279 participants were recruited from a large safety-net hospital and block randomized by health literacy to use one of the digital FHx tools, followed by a genetic counselor interview. A final sample of 273 participants were included for analyses of primary study aims pertaining to tool concordance, which assessed agreement between tool and genetic counselor. RESULTS: Tool completion differed significantly between tools (VICKY = 97%, MFHP = 51%; p < .0001). Concordance between tool and genetic counselor was significantly greater for participants randomized to VICKY compared to MFHP for ascertaining first- and second-degree relatives (ps<.0001), and most health conditions examined. There was significant interaction by health literacy, with greater differences in concordance observed between tools among those with limited literacy. CONCLUSIONS: A virtual counselor overcomes many of the literacy-related barriers to using traditional digital tools and highlights an approach that may be important to consider when collecting health histories from vulnerable populations. PRACTICE IMPLICATIONS: The usability of digital health history tools will have important implications for the quality of the data collected and its downstream clinical utility.

Designing and Evaluating a Digital Family Health History Tool for Spanish Speakers.

Digital family health history tools have been developed but few have been tested with non-English speakers and evaluated for acceptability and usability. This study describes the cultural and linguistic adaptation and evaluation of a family health history tool (VICKY: VIrtual Counselor for Knowing Your Family History) for Spanish speakers. In-depth interviews were conducted with 56 Spanish-speaking participants; a subset of 30 also participated in a qualitative component to evaluate the acceptability and usability of Spanish VICKY. Overall, agreement in family history assessment was moderate between VICKY and a genetic counselor (weighted kappa range: 0.4695 for stroke-0.6615 for heart disease), although this varied across disease subtypes. Participants felt comfortable using VICKY and noted that VICKY was very likeable and possessed human-like characteristics. They reported that VICKY was very easy to navigate, felt that the instructions were very clear, and thought that the time it took to use the tool was just right. Spanish VICKY may be useful as a tool to collect family health history and was viewed as acceptable and usable. The study results shed light on some cultural differences that may influence interactions with family history tools and inform future research aimed at designing and testing culturally and linguistically diverse digital systems.