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Sociologist uncovers who isn’t using patient portals As the health care industry incorporates more technology to improve patient experiences and health outcomes, many providers are turning to patient portals, secure websites that allow users to access their health care information online and communicate with their physician’s offices. There’s just one problem: Almost two-thirds of patients don’t use them. “That number is surprising when you think about how much emphasis there is in our society to adopt technologies, especially for health-related use and specifically for adopting patient portals,” said UWM assistant professor of sociology Celeste Campos-Castillo. Campos-Castillo’s recently published paper in the journal of Health Affairs explores who is – and isn’t – using patient portals and why. Drawing on data collected from the 2017 Health Information National Trends Survey, an annual questionnaire conducted by the National Cancer Institute that queries American adults on all things related to health care, she and her coauthors found that 63 percent of the people surveyed said they hadn’t used a patient portal within the past year. Among that percentage, there were some consistent trends. “Racial and ethnic minorities, people who are on Medicaid and Medicare, older adults, men – these are the patients who are not likely to use a patient portal,” Campos-Castillo said. “The reasons that came up were privacy concerns and people wanting to speak to their doctors directly, faceto-face.” Fears about privacy are well-founded. Hacking, she noted, became the most common type of medical record breach within the past three years. Before the advent of online records, the most people usually had to worry about was a careless employee leaving a file around the office. She found that while older adults are most concerned about privacy, that doesn’t mean younger patients are less worried about their data. “What I think is going on here is that as you get older, you also start to accumulate more information in your patient portal,” Campos-Castillo said. “You might be sicker, and you’re living your life more. There’s more information in there that you might want to keep (private). Younger people may not necessarily experience this. It’s not that they don’t care about privacy, period; it’s that they don’t have that much information to care about in their patient

portal relative to the older adults.” And, she said, older adults may be leery that their workprovided insurance may allow their employers to access their health information through patient portals. Or they may want to keep their health information private from their families to keep their spouse or children from worrying about a diagnosis. Still other people are wary of using a patient portal in lieu of talking with a doctor face-to-face. “This was particularly relevant for Medicare and Medicaid patients, who are vulnerable populations who may not have access to other resources and already face a complex web of health conditions that they have to manage,” she said. “A physician telling you, for example, ‘I’m sorry you’re feeling this way,’ or reaching out and taking your hand – that is therapeutic.” That sort of interaction doesn’t Celeste Campos-Castillo happen when patients communicate with physicians through a patient portal. However, that does mean that they are missing many of the benefits from using portals. Campos-Castillo points out that systems allows patients to access their health histories, see their clinic exam notes, refill prescriptions, message their health care providers, and even review information for errors or negative drug interactions. This research into patient portals grew out of a partnership born in the TecHealth Initiative. Founded as a way to help researchers from different disciplines meet and collaborate, the Initiative fosters inquiry into the intersection of health and technology. Campos-Castillo and UWM Psychology graduate student Paulina Lim were both attending an Initiative workshop and discovered a shared interest in technology and patient privacy concerns. Even as their research has revealed new information, Campos-Castillo says it’s also unveiled a new problem. “How should doctors talk to patients about patient portals?” she said. “We don’t know exactly what the doctor should be saying and how they should be saying it, but at this point, I think we’ve got enough evidence saying that that’s the next question researchers need to ask.” By Sarah Vickery, College of Letters & Science College of Letters & Science • UW–Milwaukee • 9

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In Focus Vol. 9, No. 2