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September 13, 2010

Recording Daily Health Data to Improve Care
By Maura Keller
For The Record
Vol. 22 No. 17 P. 6

Knowing your patients’ sleep patterns, eating habits, and medication reactions seems like pertinent information when making accurate healthcare decisions, right? But for many providers that information is either undocumented or unavailable. Enter Project HealthDesign, a program geared to revolutionize the way physicians and patients track and monitor personal health information.

Making Strides
Funded by the Robert Wood Johnson Foundation’s Pioneer Portfolio, Project HealthDesign has been created to stimulate innovation in personal HIT.

In the current phase, the national program office at the University of Wisconsin-Madison School of Nursing oversees five grantee teams working to demonstrate how to improve the health and well-being of people with chronic disease by helping them capture, understand, interpret, and act on information about the patterns of their everyday lives, or observations of daily living (ODLs).

“We hope that this information will enhance personal health records by transforming them into springboards for action and improved health decision making,” says Patricia Flatley Brennan, RN, PhD, FAAN, a professor of nursing and industrial engineering at the University of Wisconsin-Madison and the director of Project HealthDesign.

Karen G. Cheng, PhD, an assistant professor in the department of psychiatry and human behavior at Charles Drew University of Medicine and Science in Los Angeles, agrees: “The goal of this round of Project HealthDesign at our facility is to understand whether and how information about patterns from daily life can be collected, interpreted, and acted upon by patients and clinicians.” The team at Charles Drew University and the University of California, Irvine are working to create a mobile device for collecting information from preterm, low-birth-weight infants and their primary caregivers that will allow them to more easily interface with their healthcare providers to improve care and communication.

“This technology has great potential to improve communication between parents of preterm infants and healthcare providers by allowing parents to share information about their babies’ health in between clinic and office visits,” Cheng says. “This information can be used by both parents and healthcare providers to improve care of the infants.”

Cheng and her team are working to identify the ODLs that will be most useful to parents and caregivers. Using a participatory design approach, they have been talking with and listening to parents of preterm infants who may be potential users of the mobile device. ”It is important that we listen to parents and healthcare providers so that we can design the mobile device to meet their needs. So far their feedback has been very enthusiastic,” she says.

Likewise, a Project HealthDesign team at Carnegie Mellon University in Pittsburgh will be collecting information from sensors embedded in patients’ homes to determine how well they perform everyday activities such as taking medicine. The goal is to present the findings to clinicians, patients, caregivers, and loved ones who will hopefully be able to identify signs of cognitive decline sooner.

“By including observations of what people do every day into the clinical record, it offers the opportunity for clinicians to have access to more objective data,” says Anind Dey, PhD, an associate professor in the Human-Computer Interaction Institute at Carnegie Mellon University. “They can make more informed decisions, and patients can better engage with their own health and with their clinicians.”

Impacting Healthcare
People don’t live from clinical episode to clinical episode; they manage their health daily. “Giving them tools to engage them in managing their own care and helping them understand their health experiences is clearly the wave of the future,” Brennan says. “Our hope is that ODLs will provide cues for both patients and their doctors to better manage chronic conditions and find appropriate therapies.”

As with any new technology, certain hurdles must be cleared for it to take hold. From a patient perspective, only technologies that are well designed and fit snugly into lifestyles will be adopted and deemed useful.

On the other side of the equation, healthcare professionals will have additional ammunition in their fight to provide better care. “For clinicians, tracking ODLs will certainly produce more information, so the challenge is to interpret and present this new data in a way that integrates ODLs into the clinical workflow in a meaningful way,” Brennan says. “This may mean different approaches depending on the captured ODLs.”

According to Brennan, many patients already unconsciously track their health observations. For example, a woman may know her salt intake for the day is high because her rings feel tight on her fingers. Experts agree that in programs such as Project HealthDesign, deciding how many observations to record and which ones are the most important will be a significant challenge. Many grantee teams are engaging focus groups in the design of their devices and gathering input on what type of mechanisms will motivate them to keep recording their observations.

“In our first round, we learned a lot of things,” Brennan says. “Some things that seemed like obvious ‘wins’ for us, like using cell phone cameras to capture and send photos of meals to dietary counselors, were soundly rejected by the participants who tested them.” One team thought a specialized medication management device—a teddy bear with a medication dispensing pouch and a small alarm clock in its belly—would help kids take meds on time. But the University of Wisconsin team learned that no kid over the age of 4 would take the teddy bear out of the house. “On the other hand, elders liked the large-screen display of a tablet computer for medication management, and elders who hated the disembodied voice of the health interviewer were perfectly happy to type answers to questions,” Brennan says.

Another hurdle facing the project is to demonstrate that the ODLs can indeed have an impact on clinical practices and that clinicians can trust the data. “Another is to convince patients that having this information can help them as well,” Dey says. “There are also technical and privacy issues that need to be addressed to integrate these observations into electronic medical records.”

Cost is also a huge concern. Infrastructure costs range from building sensors and developing customized applications to manually capture ODLs to creating systems to interpret and integrate data into clinical settings. “The project also has the potential to greatly impact patient-doctor interactions; we obviously don’t know how that will play out at the moment,” Brennan says. “We really believe that the costs will be offset by healthcare savings.”

Challenges aside, industry players are excited about the possibilities offered by Project HealthDesign. Dey says prospective users and patients engaged by the Carnegie Mellon team have been intrigued by the idea of using the information garnered from ODLs to spot cognitive decline earlier.

“We believe that personal health records have to move beyond a repository of information to be a platform for action that engages consumers to lead healthier lives and improve care,” Brennan says. “We think ODLs might be a key to this.” 

— Maura Keller is a Minneapolis-based writer and editor.