As 2018 unfolded, I began to receive an overabundance of emails from respected research organizations with one common theme: the difficulty of study retention. Keeping subjects engaged in research, especially studies that span months to years, can be daunting, particularly if the follow-ups are infrequent. Most subjects forget they are in a research trial, while some move, switch physicians, or pass away.
In the last few months, I have switched gears from hospital-based clinical research to nursing home research. In our experience, nursing home trials often have slow start up, screening, and enrollment due to challenges with access to scarce human resources, leadership buy-in, and corporate contracting. When the facility incorporates a strong leadership culture, the staff, including nurses and even the residents, are more likely to be receptive to participation.
We encounter many residents who are interested in improving their health. Many are open to participating in minimal risk activities and enjoy contributing to science and research to improve the care of others. Some residents are cautious about research, even when the risk is low, often because of fear of being taken advantage of by people they do not know. Some have a Legally Authorized Representative (LAR) who handles their financial and/or medical matters, and they can either be the conduit to participation, but occasionally they are the barrier. Families can also play a role, even if they are not the LAR, because they do not want them bothered. Even among older institutionalized adults, we encounter many who value their contribution to research, and enjoy the interaction and attention.
The challenges of conducting nursing home research also include reluctance of an already stretched nursing home staff to help with research activities. Overcoming this challenge can be time consuming, especially given my hospital-based research in the past, where visiting residents and performing follow-ups was just a quick walk down the hallway. Nursing homes are focused on making sure they follow the regulations, minimize and handle staff shortages, and provide good resident care. They oftentimes fear that the research activities are asking for more of their time and attention.
Having a designated research team that understands the complexity of conducting research in the nursing home setting and can take on the screening, enrolling, and data collection, puts the facility staff at ease. Because when staff members are happy, residents follow suit. Once you develop trust, with both resident and staff, all parties are more involved, cooperative, and are more likely to complete the study activities. If the research staff is reaching out often to the resident and taking the burden off the facility staff, then resident and facility retention are much more likely. They are also able to complete participation with a feeling of accomplishment by contributing to the quality of care in nursing homes.