Recruitment in Online Research for COPD: Leveraging Social Media and Research Registries

A health research study is a critical first step for making innovative scientific findings usable in the real medical world. Because one treatment does not work equally for everyone, it is important to include participants of all types and backgrounds in research studies to find what works best for people in each group. Unfortunately, certain medical conditions and socio-demographic groups have been unintentionally excluded from these studies, and they continue to be marginalized from access to cutting-edge medical care and treatment.

Chronic obstructive pulmonary disease (COPD) is one example of research that needs more balanced representation of research participants. COPD is a long-term respiratory disease that affects quality of lives for millions worldwide. For patients with COPD, having confidence in their own ability to cope with the disease is critical to enhance their physical and mental well being. Including patients’ perspectives in online health research studies and self-management programs can help improve not only patient outcomes but also the current healthcare system to meet the wants and needs of patients.

However, recruiting for research participants is not an easy task. Researchers have increasingly relied on online platforms to encourage patients and people who are at risk of COPD to enroll in research studies.  Still, a limited number of people who are socioeconomically underserved and live in the rural, hard-to-reach areas have volunteered to participate in COPD research studies. To reach a diverse representation of research participants calls for a meticulous recruitment strategy.

To help hone the science of recruitment, UFCJC STEM Translational Communication Center Post-Doctoral Fellow Samantha Paige, and Center Director Janice Krieger explored how different people respond differently to messages based on where, what, when, and how they see the message. Developing and testing the right message, channel, and timing is critical to making a difference in the patient recruitment outcome.

According to their study, certain networks (research registries vs. social media) and strategies (pre-notification USPS mailer vs. personal email) work best to reach various socio-demographic groups of patients at-risk or living with COPD.

To make sure that the advertisement is relatable to the audience, the researchers first collaborated with COPD patients to create a sample recruitment message. The message was shared via the UF Health website that lists ongoing research studies. The link was picked up by COPD Facebook groups and shared among the members of the online community. The same message was sent to people who were enrolled in a UF research registry, Consent2Share.

For people in Consent2Share, the researchers took one step further.  Giving notice of an upcoming invitation letter for a research opportunity can benefit both the researchers and participants. Not only can pre-notification increase the response rate by building anticipation for the formal letter, but also encourage people to think through the pros and cons of participating in a research. To test if the pre-invitation notification is effective – and, if so, what the best way is to send it, the researchers sent a personalized pre-invitation alert to participants three days before sending a formal invitation for an online COPD research study. The messages were delivered either by email or USPS mail.

Although social media and research registry were equally effective for recruitment, each network and strategy appealed to different groups of people. Facebook was more popular among the younger, Black/African Americans and Hispanics, those without health insurance and those that self-reported more severe symptoms. In comparison, the research registry participants were mostly retired older women living in rural areas and with less severe self-reported symptoms. For this group, USPS mail was more popular than email. Also, they were more likely to finish taking the survey when they received a pre-notification letter.

The study emphasizes the importance of using a scientific method when recruiting patients. The research also suggests that promotional materials need to be tested throughout the health research campaign to make sure that the content, format, and delivery method are relatable and relevant for the target audience to increase the diversity in the research participant pool.

The original research article, “Recruitment in online research for COPD: leveraging social media and research registries,” was published in the European Respiratory Society Journal on May 1, 2019.

This summary was written by UFCJC doctoral student Donghee Lee.

Posted: July 22, 2019
Tagged as: Janice Krieger, Samantha Paige