New Grant: Helping Patients Understand Rehabilitation Measures

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Clinical research scientist Linda Ehrlich-Jones has spent her career exploring the best ways to help people with chronic illnesses such as Lupus and Parkinson’s disease live better lives. She is a big proponent of evidence-based medicine, using validated measures to see which treatments or interventions work the best. But when she ended up in physical therapy for a knee problem last year, she discovered how confusing some of those measures can be for patients. During one session, her therapist told her she had scored a 51 on an assessment. The next time, she got a 53. “Was that better? I really didn’t know,” says Ehrlich-Jones, RN, PhD. “Going up on a score isn’t necessarily better.”

Seeing things from a patient’s perspective gave Ehrlich-Jones an idea for how to improve the Rehabilitation Measures Database (RMD), which she runs at the Center for Rehabilitation Outcomes Research (CROR) at Shirley Ryan AbilityLab. The RMD is a website that aggregates various kinds of rehabilitation measures. Created by CROR and launched in 2011, the RMD recently celebrated the milestone of offering its users more than 500 measures. (see related story).

Still, the measures are written with clinicians and researchers in mind, and they often contain technical language that not everyone is familiar with. After attending a seminar at Northwestern University about visual storytelling, Ehrlich-Jones realized that infographics explaining each RMD measure might help patients and their caregivers better understand what various assessment scores meant. CROR submitted a proposal to the National Institute on Disability, Independent Living and Rehabilitation Research to fund the work, and NIDILRR agreed to fund the project in the summer of 2020.

There are several goals for the $1 million, five-year “knowledge translation” project. The primary one is improving patients’ and caregivers’ understanding of standardized assessments, but the addition of infographics is also expected to make the RMD easier to use for clinicians, which should result in them more frequently incorporating assessments in their practices. And making the RMD more visually attractive also may increase its use by students who are studying occupational therapy, physical therapy or other medical fields. The grant also ensures that the RMD is funded through 2025, which is important because CROR relies heavily on outside funding sources.

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“The Shirley Ryan AbilityLab’s commitment to supporting the Rehabilitation Measures Database is reflected in the sustained growth of users, new and updated website content, and expanding partnerships with graduate programs in rehabilitation-related professions,” says CROR Director Allen Heinemann. “New funding from NIDILRR provides the opportunity to expand further our reach to new users and to employ state-of-the-art communication strategies to engage patients and their caregivers.”

The move toward visualization is in line with the direction of work at other rehabilitation research labs, says Trudy Mallinson, PhD, Associate Dean for Health Sciences Research at the George Washington University School of Medicine and Health Science in Washington, D.C. “This really reflects that the folks at CROR are right on the cutting edge of rehabilitation science,” says Mallinson, who helped create the RMD. “At my lab, we spend a lot of time asking how we can translate an assessment to caregivers so we can communicate better with them.” She also expects the graphics will increase the understanding of policy makers and regulators who come from a variety of backgrounds. They may even help busy clinicians who use assessments but do not always fully understand how to interpret the results.

The process of creating infographics for hundreds of RMD measures will be time consuming. CROR staffers will be enlisting the help of graduate students at occupational and physical therapy programs around the country who already are involved in writing up measures for the RMD. Even with that outside help, “There’s no way we can do 500-plus infographics right away,” says Ehrlich-Jones. “We want to start with the ones that are used most often.” In 2021, CROR will be forming an advisory committee of former Shirley Ryan AbilityLab patients, clinicians, professors and disability rights advocates to get input on the project. It will also hold a focus group of people with disabilities and their caregivers to gather feedback on the infographics.

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Going forward, authors writing about new measures for the RMD will be asked to include infographics with their work. Getting the word out about the new feature to clinicians will be important so CROR researchers plan to talk about the new RMD feature at professional conferences and symposia.

Adding infographics is just the latest iteration for the RMD. In recent years, it has added a Twitter feed that highlights a different measure each week that uses humor and gifs to get people interested in reading more. The RMD also has its own LinkedIn page. “We hear from people all the time about the utility of the RMD. It’s used by thousands of people every month in every country around the world,” says Edeth Engel, a former CROR project coordinator who worked on the RMD for three and a half years. “We also have an RMD email address where people can ask for advice about measurement tools. We get emails from India all the time and I recently responded to somebody from the National Health Service in England. That’s pretty cool.”