Leveraging Social Networking Sites for an Autoimmune Hepatitis Genetic Repository: Pilot Study to Evaluate Feasibility

Abstract

BackgroundConventional approaches to participant recruitment are often inadequate in rare disease investigation. Social networking sites such as Facebook may provide a vehicle to circumvent common research limitations and pitfalls. We report our preliminary experience with Facebook-based methodology for participant recruitment and participation into an ongoing study of autoimmune hepatitis (AIH).ObjectiveThe goal of our research was to conduct a pilot study to assess whether a Facebook-based methodology is capable of recruiting geographically widespread participants into AIH patient-oriented research and obtaining quality phenotypic data.MethodsWe established a Facebook community, the Autoimmune Hepatitis Research Network (AHRN), in 2014 to provide a secure and reputable distillation of current literature and AIH research opportunities. Quarterly advertisements for our ongoing observational AIH study were posted on the AHRN over 2 years. Interested and self-reported AIH participants were subsequently enrolled after review of study materials and completion of an informed consent by our study coordinator. Participants returned completed study materials, including epidemiologic questionnaires and genetic material, to our facility via mail. Outside medical records were obtained and reviewed by a study physician.ResultsWe successfully obtained all study materials from 29 participants with self-reported AIH within 2 years from 20 different states. Liver biopsy results were available for 90% (26/29) of participants, of which 81% (21/29) had findings consistent with AIH, 15% (4/29) were suggestive of AIH with features of primary biliary cholangitis (PBC), and 4% (1/29) had PBC alone. A total of 83% (24/29) had at least 2 of 3 proposed criteria: positive autoimmune markers, consistent histologic findings of AIH on liver biopsy, and reported treatment with immunosuppressant medications. Self-reported and physician records were discrepant for immunosuppressant medications or for AIH/PBC diagnoses in 4 patients.ConclusionsFacebook can be an effective ancillary tool for facilitating patient-oriented research in rare diseases. A social media-based approach transcends established limitations in rare disease research and can further develop research communities.

Cannabidiol (CBD) Consumption and Perceived Impact on Extrahepatic Symptoms in Patients with Autoimmune Hepatitis

“…We readily admit the possible limitation of patientreported disease and CBD use data in this study. Historically, we have shown that AIH patients participating in similar research approaches exhibit excellent diagnosis agreement when compared to their medical records [15] as well as similar demographics and disease attributes [16]. However, we also believe there are tremendous benefits to treating physicians and patients allowed by rapid recruitment and dissemination of research regarding emerging and popular healthcare trends [29].…”

“…com): Autoimmune Hepatitis Research Network and Autoimmune Hepatitis Association. We have previously described this approach for collecting patient-reported disease attributes [16] as well as recruitment to an ongoing AIH biorepository at Indiana University [15]. At the time of the survey, the combined membership of these online communities was over 2600.…”

“…However, patients with rare disease are increasingly colocated virtually online through social media outlets such as Facebook, Instagram or through traditional Web sites that promote peer-to-peer connections (www.patie ntsli keme.com) or nonprofit organizations dedicated to their disease [13]. Our group in the past has successfully leveraged social media to conduct research in online cohorts of autoimmune hepatitis by deploying surveys that even included confirmation of diagnosis by procuring medical records and biosamples [14,15]. In the current study, we aimed to identify the frequency of CBD use in AIH patients and assess the impact on symptoms and safety profile using two large AIH-specific social media groups.…”

National Institutes of Health Support of Digital Health Behavior Research

“…Consequently, social media has emerged as a potential tool to enhance patient engagement and recruitment for trials. The advantage of social media is its reach given geographically diffuse populations, particularly for rare diseases outcomes (Comerford et al, 2018) and can reduce costs for recruitment while potentially increasing diversity.…”

Hepatic steatosis is highly prevalent but is not correlated with stiffness in autoimmune hepatitis

“…The GRACE study [ 14 ] has been described previously. Briefly, this ongoing AIH patient repository was initiated in 2014 to collect retrospective and prospective AIH cases in order investigate genetic and environmental underpinnings of disease development.…”