With Intensive Preparation, Seriously Ill Elders Can Participate in Virtual Research
Key findings
- This study included eight homebound elders and older caregivers who participated in 15 meetings of a stakeholder advisory board via videoconferences, often despite low digital literacy
- Participants used tablets that have elder-friendly features such as improved sound, a charging dock rather than a cable and a simple graphic user interface
- The researchers modified the tablets by removing most applications, installing functionality that let them monitor device location and battery level, pre-setting the Zoom meeting ID and disabling confusing Zoom features
- Participants were individually trained in advance about how to use their tablet, with key skills taught as needed
- Practical tips: Schedule 10–15 minutes for everyone to join, provide live tech support, send a paper agenda and slides in advance and monitor device battery power the night before each meeting, then remind users to charge if necessary
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The National Institutes of Health mandates that clinical studies include participants of all ages, but older patients are still underrepresented. Elders who are seriously ill and/or homebound are especially likely to be excluded.
Christine Seel Ritchie, MD, MSPH, director of research in the Division of Palliative Care and Geriatric Medicine and director of the Mongan Institute Center for Aging and Serious Illness at Massachusetts General Hospital, and colleagues have successfully used videoconferencing technology to engage homebound older people and caregivers, including some with low digital literacy, as advisors for patient-centered outcomes research. They report their innovations in a letter to the editor of the Journal of Palliative Medicine.
The Project
Over a six-month period in 2019, researchers at two study sites convened 15 videoconference sessions with eight individuals who constituted a stakeholder advisory board. Half of the participants were homebound elders (ages 66–87) and half were caregivers of homebound individuals (ages 58–74).
Some Keys to Success
Recruitment and retention were tailored to elders
To make the enrollment process elder-friendly, exclusion criteria were minimal, the informed consent process was teach-to-goal, monetary incentives were provided, team members were trained in the unique needs of older adults and participants interacted with the same team members every time.
To improve the chances of assembling a diverse advisory board, the team itself was diverse, and recruitment was conducted through direct mailings, community ambassadors and health care providers.
Devices were simplified and extensively tested before distribution.
The project made use of tablets that have elder-friendly features such as improved sound, a charging dock rather than a cable and a simple graphic user interface. Even so, tech team members removed most applications. They also installed functionality that let them monitor device location and battery level.
After conducting mock videoconferences, the tech team decided to pre-set the Zoom meeting ID, set Zoom so that audio and video connect automatically and disable Zoom "driving mode," which disables video and mutes the microphone.
Training and navigation assistance was iterative
Initial training was done in person, but it could have been virtual. Participant abilities were assessed informally and training was given in key skills using the teach-back method. A visual instruction guide was provided.
Because of difficulties using the Zoom interface, half the participants needed help joining every meeting. The team learned to schedule a 10- to 15-minute connection period and check that everyone could see and hear before beginning the meeting. One site called participants 15 minutes ahead of time to help them. One team member had the sole responsibility of providing tech support during meetings.
Participants received extra support
Before each meeting, participants received a paper agenda and slides and were reminded to charge their device. If the team saw that a tablet's battery power was low, they called the night before the meeting. To foster camaraderie, the team conducted ice breakers and allowed time for socializing at the beginning of meetings.
Reinventing the Norms
The methodology of this project is relevant to any isolated population during COVID-19—and during future pandemics. It provides proof of concept that elders can be included in virtual research, including those with serious illness.
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