SOCIAL MEDIA AS A KEY TOOL TO RECRUIT RARE DISEASE PATIENTS FOR CLINICAL RESEARCHERS

Purpose: Recruiting subjects with rare diseases into clinical studies is challenging due to small patient pools.  These patients often interact in on-line support groups, many of which are publically accessible through social media, offering researchers a promising recruitment tool for clinical research

Method: Our survey study aimed to recruit 200 patients with a rare disease, myelofibrosis, to complete questionnaires on quality of life and demographics.  Initially, patients were approached through physicians, and notices on websites of myelofibrosis support groups. Interested patients contacted the study co-ordinator and were mailed paper questionnaires, to complete and return by mail. Many patients requested computerized questionnaires, so we put them on Survey Monkey, which is free secure on-line survey software that allows sample collection, data analysis, and data representation. Also, several websites of myelofibrosis support groups offered links to social media. We systematically searched for on-line myelofibrosis groups and communities in English-speaking countries via social media using specific key terms. The on-line survey link was distributed to these groups and available for one year. Patients completed the questionnaires on-line and data were entered directly into a database, accessible only to the researchers. Patients could complete the questionnaires only once. Patients could also decline to answer or withdraw from the survey; these were counted as incomplete surveys. Referral sources, and response patterns and demographic characteristics of respondents were examined

Result: Only 20 myelofibrosis patients were recruited within 3 months using the traditional telephone, mail, and paper method. After putting the questionnaires on-line and reaching to patients via social media, another 154 patients were recruited and 105 completed valid surveys. The majority of the respondents were from the United States and Canada. The leading referral sources were online patient communities, Facebook, and Internet forums. Approximately 43% of respondents were female, 31% were male, and 26% did not report gender. Their mean age was 58 years, ranging from 26 to 82. Overall, over 88% of all patients were recruited using social media. 

Conclusion: Our results show the potential of social media to assist clinical researchers in recruiting patients with rare diseases for survey studies. The methodology from our study may be helpful to design clinical research studies for other types of rare diseases which face the problem of recruiting sufficient numbers of patients.