As a high school student, junior Darcey Hookway spent time volunteering on a dementia ward at a local hospital. “The social aspect of their condition really struck me,” says Hookway, who is from London. “They struggled immensely with social isolation. And now with COVID exacerbating that more than ever, I think that’s a huge detriment to their health.”
This summer Hookway, a health and societies major, pursued a paid research internship tightly linked to that earlier experience. Working with the Policy and Economics of Disability, Aging, and Long Term Care (PEDAL) Lab, run by Norma Coe of Penn’s Perelman School of Medicine, Hookway engaged with a variety of projects that touched on end-of-life issues. The internship was funded through the Penn Undergraduate Research Mentoring program.
The work breathed life into material that Hookway had encountered in her classwork.
“It was always difficult to get my head around Medicare and Medicaid in my health management class, which were very focused on those systems,” she says. “The whole insurance thing is still something I have a hard time with, coming from the United Kingdom. But to take my time and look through these policies and what’s available to everyday people was very helpful and really helped me solidify what I had previously learned in a classroom with real-world data.”
Throughout the summer, Hookway contributed to a number of projects for the PEDAL Lab. A major one involved a study of cognitive training in older adults, the Advanced Cognitive Training for Independent and Vital Elderly (ACTIVE) trial. A longitudinal study, the trial began in the 1990s to investigate how a series of exercises aimed at improving memory, reasoning, and processing speed translated into outcomes such as everyday functioning and incidence of dementia and depression.
“It was a huge, multisite study involving more than 2,800 people,” Hookway says. “They would do cognitive training for a period of time, and they were followed up with until 2010, but there hadn’t been any follow-up since then.”
Now researchers are gathering further data from various administrative sources, including Medicare and Medicaid claims, driving records, and more for a long-term follow-up of this group.
Hookway assisted with organizing this data and conducting a review of the studies that had been completed with earlier data. “My review concluded that, while there was plenty of research agreeing that cognitive training had beneficial effects on cognitive abilities and self-reported everyday function, little was known about the long-term reduction in dementia incidence and duration, disability, and health case usage and costs,” she says. All are issues that the ACTIVE follow-up work aims to illuminate.
In another project, Hookway reviewed how families pay for long-term care. Coming from a country with universal health insurance, she was dismayed to learn that many families of dementia patients must deplete their funds in order to qualify for Medicaid to pay for needed care. “To me it seems like an awful system that one must go through while also battling this incredibly difficult disease,” Hookway says.
Aside from her main projects, Hookway also composed language for the PEDAL Lab Twitter account, contributed her writing and editing skills to group projects, and cleaned up datasets other lab members were working with.
“She provided important research support, such as collecting data and helping to problem-solve data-related issues, like when codes change over time or are different between data sets,” Coe says. “It isn’t always glamorous work, but it is important, and a good attention to detail is needed. She also provided a lot of enthusiasm, which we needed in the summer of 2020.”
Each week, Hookway had frequent check-ins with Emily Blecker of the PEDAL Lab to help curate her work and prioritize her energies. And for the time between her projects, Blecker and fellow lab member Melisa Berkowitz created a personalized course in the statistical analysis program R, a key skill to acquire in a field replete with modeling.
Hookway’s experience in the PEDAL Lab has already helped land a summer position for next year. She’ll be working with the dialysis company DaVita, where she’ll be trying to improve the patient experience.
“Once you start dialysis you can’t really end it unless you get a kidney transplant, and rates of success are very iffy,” she says.
Longer term, Hookway envisions a future working in health care policy, particularly aimed at the complex issues of aging and long-term care. “Down the line once I gain more experience I’d love to work in health care, whether its researching policy or rewriting policy, I think that would be a great pathway,” she says. “Working on policies that could better address the issues people face, not only being diagnosed with a chronic condition but how they can fund and pay for their care, would be fascinating.”
Emily Blecker is a project manager in the Department of Medical Ethics and Health Policy in the Perelman School of Medicine at the University of Pennsylvania.
Norma Coe is an associate professor in the Department of Medical Ethics and Health Policy in the Perelman School of Medicine at the University of Pennsylvania.
Darcey Hookway is a junior from London majoring in health and societies with a concentration in public health at the University of Pennsylvania.
The Penn Undergraduate Research Mentoring (PURM) program, administered by Penn’s Center for Undergraduate Research & Fellowships, provides students completing their first or second undergraduate year the opportunity to spend a summer conducting 10-week research projects with Penn faculty. Since its inception in 2007, PURM has funded more than 800 Penn faculty members to provide more than 1,000 undergraduates with cutting-edge research experiences.