Can digital and multi-modal approaches succeed in helping researchers to engage aging populations for eConsent and data collection? According to Dr. Sofiya Milman, Associate Professor of Endocrinology and Genetics at Albert Einstein College of Medicine, the answer is a resounding yes.
We sat down with Dr. Milman for our podcast to talk about the SuperAgers Family Study, and how she and her collaborators have cultivated a number of strategies and digital tools to power their recruitment, data collection, cross-institutional collaboration, and participant engagement.
Superagers are defined not just by reaching the milestone age of 95, but also by their apparent resistance to the onset of aging-related conditions. Superagers typically remain independent and maintain a good quality of life well beyond their peers. They experience diseases associated with aging such as heart disease at a lower rate, or at a later age. If and when they do contract age-related disorders, they often are diagnosed 20-30 years later than the general population.
Research in centenarian populations has been ongoing for years, Dr. Milman explained. In building the largest cohort for centenarians to date, the SuperAgers Family Study is improving upon this legacy by breaking free of the traditionally small sample sizes for which aging cohort studies have been known. The SuperAgers study team decided they needed to think innovatively and nationally to recruit the number of centenarians they want, and to reach the depth of insight they wanted in their research. Exceptional longevity is considered a rare condition where less than 2% of the US population is 95 or older. The study team chose a recruitment goal of 10,000 participants. This number was selected to accommodate for a relatively large sample size given the population while calibrating to the statistical reality of enrolling such a rare cohort.
Since the SuperAgers Study involves funding and collaboration with the American Federation of Aging Research (AFAR) as well as academic partners and industry leaders in aging research, effective collaboration across these institutions has been key to its execution. AFAR has been instrumental in connecting the seasoned researchers at Einstein College of Medicine and Boston University with experts across many disciplines and gaining media exposure to spread the word. Vibrent Health has taken the role of powering the study with digital solutions for researchers to manage data, consent, and participant engagement. And Regeneron Genetics Center, a biotechnology leader in accelerating drug discovery, is sequencing all the collected subject samples.
The ultimate goal of SuperAgers has been to create a resource for researchers who study geroscience—the study of the genetic underpinnings of aging biology. “We want to make this data available to as many researchers as we can. The more scientists have access to the data to approach from their unique perspective, the faster we’ll make new discoveries,” Dr. Milman told us. Once the study is completed, clinical and genetic data will be shared through a secure database where academic and industry researchers agree to ethical scientific regulations to access and utilize the data.
Including children of superagers in the study was both a scientific and a practical choice. For one, studies have demonstrated that the children of superagers tend to possess genetic traits that sustain longer life. The ambition of the SuperAgers team is to extend their study lifetime as the offspring age and become superagers themselves. And by including the spouses of superager children, the team has a comparison group, while controlling for some environmental and behavioral factors that spouses tend to share. For instance, since spouses tend to share the same home, the same food, the same air, and so on, the study team can more effectively study the genetic components that drive disease and aging.
While some superagers are comfortable utilizing digital tools, many are not. The offspring in the study are often instrumental in helping their elders use the technology designed for enrollment into the study, and to collect consent and various data from these elderly participants. Leveraging family connection also helps to cultivate trust. “I think it’s really important in building a sense of trust having family members to help review the materials with them and to support them through the process,” Dr. Milman explained to us.
Interested in learning more about the SuperAgers study and how they’ve recruited, engaged, and collaborated? Listen to the podcast here:
Dr. Milman pointed out how utilizing different media channels for different audiences can meet them where they are. For example, she said that the study team advertises through traditional media such as newspapers and television to reach the older generation, whereas the younger generation is more easily accessible and recruitable through digital channels such as social media ads and their study website.
One remarkable aspect of the SuperAgers Family Study has been the use of video to give potential enrollees an idea of what to expect from the study. Video has proven to be a useful digital tool for study teams to support patients during the recruitment and consent process, across a spectrum of age demographics and cognitive abilities. This is due to its ability to create a deeper understanding of a study more quickly than traditional paper consent.
Dr. Milman said that their video easily explains things like how their data will be used for the research, and how it will be protected to respect privacy in the digital realm. Thanks to some superagers taking to digital methods for consent and engagement, the SuperAgers team has been able to enroll and study participants with greater ease and efficiency.
SuperAgers includes a unique aspect where participants get to join into a SuperAgers online community. This is especially helpful to a population who have likely had many friends and family members who have passed away. “By creating this community that superagers can relate to, hopefully it gives them an opportunity to meet people who have had similar experiences,” said Dr. Milman. The community is also a positive environment where other family members and people who aren’t superagers can connect and learn from the life experiences of individuals who have remained healthier for longer.
In describing how digital tools have enhanced her study team’s work, Dr. Milman explained, “it’s actually freed us to do more with fewer resources.” She mentioned the need for fewer research staff since her team does not have to engage every participant one-on-one for data collection and other study procedures. Additionally, she pointed out a greater accuracy in the data due to little or no transcription needed from paper forms—since digital collection goes straight to a centralized, secure database. Data can also be quickly and easily checked for quality to ensure it is accurate. Direct digital methods for data collection and analysis also allow these checks to be ongoing and more immediate since the paper-to-digital transcription process is not necessary for ongoing collection. This also gives her study team the freedom to share the data more quickly with other researchers provided its digital format.
But paper consent and collection hasn’t completely gone away. Dr. Milman mentions that the team is flexible in offering paper copies of questionnaires for those participants where technology is too challenging. And their use of a computer assisted telephone interviewing (CATI) tool built into their digital research platform has proven useful for engaging participants in an automated yet personal way.
Overall, digital tools have proven useful for the SuperAgers team in engaging a far wider pool of participants across a wider geographical catchment area than aging studies have traditionally had the opportunity to capture. And in seeking to build a community where participants can connect and a digital environment ripe for collaboration, the SuperAgers team has laid the groundwork for more data and more innovation.
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