- Although not yet widely used, patient-generated health data may have potential to improve patient-centered care by providing direct insights into what consumers are doing in between clinical visits. As healthcare professionals consider new strategies for patient engagement, PGHD is like to become one way to put the patient at the forefront of her care.
For Michael Weiner, MD, Director of Health Services Research at the Regenstreif Institute, patient-generated health data serves as the backbone of much of his work, from shaping better care plans to informing new, patient-centered healthcare research.
“I think PGHD is going to grow and grow and become one of the standard, mainstream types of data that are a core part of medical care,” said Weiner, who is also a professor of medicine at the Indiana University School of Medicine and a principal investigator at the Department of Veterans Affairs.
“Right now, it’s more of an add-on. It’s extra information that’s used to supplement the standard medical information, the type that we’ve been collecting for many years.”
Because PGHD comes straight from the patient, it has the power to improve patient-centered care in ways that test results and other point-of-care data may not. Patient-generated health data gives a broad view of patient health, Weiner said, and helps providers make decisions based on what patients say they need rather than on what the provider thinks the patient might need.
However, in order for PGHD to be most effective, the healthcare industry must focus its attention on its best uses. According to Weiner, the industry has done great work on how to collect patient-generated health data; now is the time to understand how providers should apply this information.
“A lot of the challenge is actually not just in collecting the data, but figuring out how to use these patient-generated health data,” he explained. “We have very limited information and studies on the best ways to actually use the data and apply the results in a way that improves health outcomes. That’s where a lot of the work still needs to be done.”
In his own practice, Weiner utilizes patient-generated health data to target the unique needs of geriatric patient populations. In addition to collecting symptoms, Weiner addresses patient questions and social needs, changing how he delivers medicine.
“Certainly, there are many common issues that these patients encounter, including issues with disability, taking care of themselves, depressive symptoms and isolation, and other psychosocial issues,” he listed. “If I can identify those issues, I can really help the patients get into a much more satisfying and rewarding environment for themselves.”
In his research, too, Weiner is looking for better use cases for PGHD. Currently, he and his team are looking at how patient-generated health data can help improve self-monitoring in diabetes care.
Weiner is collecting patient-reported information about calorie intakes, activity levels, and medication use in relation to hypoglycemia, or low blood sugar. Understanding these levels, and how patients report them, may affect how care teams manage diabetes between visits.
“We’re doing some work right now to improve our capture of data about all of those factors so that we can integrate the data in ways that are more useful in actually preventing these low blood sugar events for patients,” Weiner said.
Creating effective uses for PGHD is critical, Weiner said, considering the benefits it can have on clinical care and patient engagement.
In the clinical care setting, providers can use mHealth data to address problems persisting between office visits.
“Of course, most of the time in your life is occurring not in the medical environment, but in your own setting,” Weiner said. “The ability for the healthcare team to understand those activities, those challenges, is very important in guiding care.”
Activity tracked by a Fitbit, for example, can help inform a new diabetes treatment plan. Patients who collect blood pressure levels on a Bluetooth device can inform their providers of their day-to-day levels of health, potentially leading to a better chronic disease management plan.
PGHD also has the potential to improve clinical quality and reduce healthcare costs.
“If, for example, we already know that you already had a certain diagnostic test or procedure, we don’t have to repeat that,” Weiner explained. “If we can improve patient safety because we know what kinds of adverse reactions you may have had to a drug or something in your environment, we can take steps to avoid those same triggers.”
PGHD also improves how patients interact with their own care, Weiner said. Collecting their own health data, whether through a personal health record or an mHealth technology, innately activates the patient in their healthcare.
“The process of providing and sharing data can also improve patients’ own skill and knowledge, and even confidence in self-management, because along the way they are receiving feedback about the data that they’re generating,” Weiner said. “This can lead to improvements in their treatment plans and also their lifestyles and behaviors.”
As providers continue to push for better patient engagement, it will be important for them to determine how to effectively use PGHD.
According to Weiner, patient-generated health data is viewed as an add-on nice to clinical data collected from office visits and laboratory tests.
“I think that relationship will reverse itself, or at least we’ll see a greater predominance of patient-generated health data,” Weiner concluded. “Both because the data will be easier to capture, and because we’ll know much more about how we can actually use those data effectively in care.”