- Using Facebook rather than traditional methods for clinical trial recruitment may save time and money, but could present patient data collection and demographic challenges, according to a study published in JMIR.
To test the utility of social media for clinical trial recruitment, researchers used a private Facebook community called the Autoimmune Hepatitis Research Network (AHRN) to share resources and recruit patients for research opportunities, including the Genetic Repository of Autoimmune Liver Diseases and Contributing Exposures (GRACE), an ongoing observational study on autoimmune hepatitis (AIH).
Between June 2014 and June 2016, researchers enrolled 29 participants from 20 different states in the GRACE study.
Recruitment of 29 subjects was substantial for this study, as the traditional recruiting method provided only 120 cases in the same duration of study.
The team notes that although retrieving outside medical records from patients proved time intensive, recruitment through social media took less time than it did using traditional methods.
Participants also did not need reimbursement for travel, parking, or time burdens, which significantly reduced the overall cost of the study.
Of the 29 participants, 28 successfully completed and returned study materials within three months of confirming their consent with a coordinator over the phone.
Seventy-nine percent of participants provided medical information release forms and their external medical records after the first request.
However, researchers found discrepancies between participant surveys and medication records for immunosuppressant medication usage. Three participants reported no active immunosuppressant use, which was contradicted by their outside medical records.
The researchers note that conducting high-impact, meaningful studies on rare diseases like AIH comes with many challenges, most notably patient recruitment.
The low density of academic research centers and sparse distribution of patients across the country means many patients don’t have the chance to play an active role in advancing the treatment of their own disease.
“Challenges in recruiting patients into rare disease clinical studies contribute to wide knowledge gaps in understanding disease pathogenesis, natural history, and optimal therapeutic approaches,” the researchers wrote.
Difficulty in recruiting patients for clinical studies and trials is an ongoing issue. A 2016 survey found that 65 percent of respondents were unlikely to enroll in a clinical trial.
Fifty percent of those respondents said they were apprehensive about the potential costs of clinical trial enrollment, while 48 percent were mainly concerned about receiving treatment at an inconvenient location.
As the GRACE study researchers note, social media can eliminate some of these obstacles.
“Application of these tools in rare disease research is important, as they transcend well-established limitations such as cost, prolonged study courses, and geographic barriers,” they wrote.
However, the researchers also mention that implementing social media in medical research presents several challenges, including acceptance of these new methods by providers and health systems.
“Low acceptance may stem from slow adoption of new technologies, particularly in fast-paced clinical environments, and research regarding the use of social media in medical research is still limited.”
Using social media also has the potential to confirm existing demographic biases that already plague traditional recruitment methods.
A 2017 report from the FDA found that 76 percent of clinical trial participants were white, reflecting a demographic imbalance that may not address the various health needs of different communities across the US.
As the team points out, 90 percent of participants in the GRACE study were white, all were female, and their median age was 52.
The researchers state that these demographics worked well for this particular study, as many social media users are female. But this may not be the case for all rare diseases, and this must be considered when applying social media to specific patient populations.
Initiatives like NIH’s All of Us project are hoping to eliminate the demographic biases that come with clinical trial recruitment and disease research. The project will focus on enrolling patients of various backgrounds and socioeconomic circumstances to help providers and healthcare organizations learn how individual differences can contribute to health and disease.
The program will act as a broad resource for research on a number of chronic and acute diseases and will gather patient data from participants’ electronic health records, as well as blood and urine samples.
NIH’s approach to gathering patient information differs from that of the GRACE study, in which participants self-reported their diagnosis data.
The GRACE researchers note that patient-reported data weren’t always congruent with clinician medical records, but that more traditional methods using patient-reported data has shown similar results, suggesting that this issue isn’t specific to social media-based research.
The researchers’ results show that social media may be a valid way to help facilitate patient-oriented research in certain rare diseases by eliminating geographical barriers and lack of local opportunities.
Researchers considering using social media as a method of clinical trial recruitment must keep in mind the possible demographic and data collection challenges that may come with this method.
“In overcoming recruitment limitations, we now seek a way to efficiently expedite the time between recruiting individuals, obtaining their biologic samples and epidemiological data, and confirming their diagnosis,” the researchers wrote.
“Mindful use of social media can transcend established limitations in rare disease research and further cultivate powerful and engaged research communities,” they conclude.