Using Facebook to Reach People Who Experience Auditory Hallucinations

Crosier, Benjamin S.; Brian, Rachel; Ben‐Zeev, Dror

doi:10.2196/jmir.5420

Cited by 25 publications

(13 citation statements)

References 16 publications

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“…hard-to-reach or rare disease populations [51][52][53][54][55]. Thus, allocation of funding to digital awareness strategies may be a worthwhile investment by studies seeking to capitalize on the increasing reach of these kinds of media in service of improved study recruitment.…”

Section: Discussionmentioning

confidence: 99%

To end disease tomorrow, begin with trials today: Digital strategies for increased awareness of a clinical trials finder

Jerome

Dunkel

Kennedy

et al. 2019

J. Clin. Trans. Sci.

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Introduction:Individuals experiencing different medical conditions, as well as healthy volunteers, may often be interested in trial participation, and researchers similarly need to find participants to advance medical knowledge. The ResearchMatch (RM) Trials Today clinical trial searching tool leverages data to enable potential participants to look for trial opportunities relevant to their situation. To facilitate expanded use of this tool, we undertook a national digital public awareness campaign to increase awareness of Trials Today among members of the general public.Methods:The awareness campaign promoted Trials Today using Facebook and digital banner messages in 2017, encompassing nine cities across the USA. The digital strategy was complemented by print media in several outlets. We employed descriptive statistics to summarize campaign metrics and site usage data during the campaign.Results:The campaign was successful in increasing visits to Trials Today, with 142,303 sessions logged during its run, as compared to pre-campaign data indicating 104,688 total sessions during the entire 2-year period since the site’s inception. The city-specific click-through rate for all digital impressions, combining Facebook and banner messaging, ranged from 0.50% to 1.09%, resulting in a cost-per-click range of $0.69–$1.15. In addition, visitors conducted 29,697 searches and viewed individual trial records 173,512 times.Conclusion:The public awareness campaign was successful in increasing use of the RM Trials Today clinical trial searching tool. Our findings support the value of digital media messaging as a cost-effective vehicle for promoting clinical trial awareness, especially for chronic ailments.

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Section: Discussionmentioning

confidence: 99%

To end disease tomorrow, begin with trials today: Digital strategies for increased awareness of a clinical trials finder

Jerome

Dunkel

Kennedy

et al. 2019

J. Clin. Trans. Sci.

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“…Czajka et al [ 21 ] used crowdsourcing to efficiently recruit a global cohort and is the largest study on patients with multiple hereditary exostoses. Crosier et al [ 26 ] used Facebook to recruit patients with auditory hallucinations; within 6 weeks, over 250 patients had completed this survey. Pohlig et al [ 27 ] concluded that enrollment of patients in prospective studies is time-consuming and could be facilitated by use of crowdsourcing.…”

Section: Discussionmentioning

confidence: 99%

The Patient Perspective on the Impact of Tenosynovial Giant Cell Tumors on Daily Living: Crowdsourcing Study on Physical Function and Quality of Life

Mastboom¹,

Planje²,

Sande³

2018

Interact J Med Res

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BackgroundTenosynovial giant cell tumor (TGCT) is a rare, benign lesion affecting the synovial lining of joints, bursae, and tendon sheaths. It is generally characterized as a locally aggressive and often recurring tumor. A distinction is made between localized- and diffuse-type. The impact of TGCT on daily living is currently ill-described.ObjectiveThe aim of this crowdsourcing study was to evaluate the impact of TGCT on physical function, daily activities, societal participation (work, sports, and hobbies), and overall quality of life from a patient perspective. The secondary aim was to define risk factors for deteriorated outcome in TGCT.MethodsMembers of the largest known TGCT Facebook community, PVNS is Pants!!, were invited to an e-survey, partially consisting of validated questionnaires, for 6 months. To confirm disease presence and TGCT-type, patients were requested to share histological or radiological proof of TGCT. Unpaired t tests and chi-square tests were used to compare groups with and without proof and to define risk factors for deteriorated outcome.ResultsThree hundred thirty-seven questionnaires, originating from 30 countries, were completed. Median age at diagnosis was 33 (interquartile range [IQR]=25-42) years, majority was female (79.8% [269/337]), diffuse TGCT (70.3% [237/337]), and affected lower extremities (knee 70.9% [239/337] and hip 9.5% [32/337]). In 299 lower-extremity TGCT patients (32.4% [97/299]) with disease confirmation, recurrence rate was 36% and 69.5% in localized and diffuse type, respectively. For both types, pain and swelling decreased after treatment; in contrast, stiffness and range of motion worsened. Patients were limited in their employment (localized 13% [8/61]; diffuse 11.0% [21/191]) and sport-activities (localized 58% [40/69]; diffuse 63.9% [147/230]). Compared with general US population, all patients showed lower Patient-Reported Outcomes Measurements Information System-Physical Function (PROMIS-PF), Short Form-12 (SF-12), and EuroQoL 5 Dimensions 5 Levels (EQ5D-5L) scores, considered clinically relevant, according to estimated minimal important difference (MID). Diffuse versus localized type scored almost 0.5 standard deviation lower for PROMIS-PF (P<.001) and demonstrated a utility score of 5% lower for EQ-5D-5L (P=.03). In localized TGCT, recurrent disease and ≥2 surgeries negatively influenced scores of Visual Analog Scale (VAS)-pain/stiffness, SF-12, and EQ-5D-5L (P<.05). In diffuse type, recurrence resulted in lower score for VAS, PROMIS-PF, SF-12, and EQ-5D-5L (P<.05). In both types, patients with treatment ≤1year had significantly lower SF-12.ConclusionsTGCT has a major impact on daily living in a relatively young and working population. Patients with diffuse type, recurrent disease, and ≥2 surgeries represent lowest functional and quality of life outcomes. Physicians should be aware that TGCT patients frequently continue to experience declined health-related quality of life and physical function and often remain limited in daily life, even after treatment...

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“…One of the main advantages of Facebook’s popularity is the possibility of using it for the recruitment of people affected by not-so-common conditions such as auditory hallucinations [ 13 ]. It can also be used for targeted recruitment of people with particular demographic profiles [ 14 - 16 ] or health behavior (eg, long-term smoking [ 17 ]).…”

Section: Introductionmentioning

confidence: 99%

Online Health Monitoring using Facebook Advertisement Audience Estimates in the United States: Evaluation Study

Mejova

Weber

Fernández-Luque

2018

JMIR Public Health Surveill

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BackgroundFacebook, the most popular social network with over one billion daily users, provides rich opportunities for its use in the health domain. Though much of Facebook’s data are not available to outsiders, the company provides a tool for estimating the audience of Facebook advertisements, which includes aggregated information on the demographics and interests, such as weight loss or dieting, of Facebook users. This paper explores the potential uses of Facebook ad audience estimates for eHealth by studying the following: (1) for what type of health conditions prevalence estimates can be obtained via social media and (2) what type of marker interests are useful in obtaining such estimates, which can then be used for recruitment within online health interventions.ObjectiveThe objective of this study was to understand the limitations and capabilities of using Facebook ad audience estimates for public health monitoring and as a recruitment tool for eHealth interventions.MethodsWe use the Facebook Marketing application programming interface to correlate estimated sizes of audiences having health-related interests with public health data. Using several study cases, we identify both potential benefits and challenges in using this tool.ResultsWe find several limitations in using Facebook ad audience estimates, for example, using placebo interest estimates to control for background level of user activity on the platform. Some Facebook interests such as plus-size clothing show encouraging levels of correlation (r=.74) across the 50 US states; however, we also sometimes find substantial correlations with the placebo interests such as r=.68 between interest in Technology and Obesity prevalence. Furthermore, we find demographic-specific peculiarities in the interests on health-related topics.ConclusionsFacebook’s advertising platform provides aggregate data for more than 190 million US adults. We show how disease-specific marker interests can be used to model prevalence rates in a simple and intuitive manner. However, we also illustrate that building effective marker interests involves some trial-and-error, as many details about Facebook’s black box remain opaque.

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Using Facebook to Reach People Who Experience Auditory Hallucinations

Cited by 25 publications

References 16 publications

To end disease tomorrow, begin with trials today: Digital strategies for increased awareness of a clinical trials finder

To end disease tomorrow, begin with trials today: Digital strategies for increased awareness of a clinical trials finder

The Patient Perspective on the Impact of Tenosynovial Giant Cell Tumors on Daily Living: Crowdsourcing Study on Physical Function and Quality of Life

Online Health Monitoring using Facebook Advertisement Audience Estimates in the United States: Evaluation Study

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