Authors:
Patti Brennan, Wendy Swanberg
Right now, there is terrific momentum and energy around the idea of digital health technology. Earlier this year a writer for Forbes magazine called 2013 "The Year of Digital Health" [1]. At the 2013 Consumer Electronics Show, health-related devices accounted for nearly one-quarter of the items on displayeverything from a fork that tells you if you're eating too fast [2], to neurotesting devices that detect concussions [3], even a device that quantifies stress level into a Zen index.
At Project HealthDesign [4] we've been working at the nexus of health and technology for the better part of a decade, and we have learned that digital health extends far beyond the gadgetry that captures popular imagination. Digital technology is poised to completely transform not only the tools that clinicians and patients use in healthcare, but also the very way they conceive of healthcare. Our multidisciplinary project teams discovered that in order to harness technology's full potential, patients and clinicians need to recalibrate the way they communicate with each other. Two changes are essential: a reimagination of what should be considered data and a reconceptualization of how patients and clinicians listen to one another. Digital health technologies designed with the active involvement of patients can facilitate these changes. They can help everyone in the healthcare system to develop a new way of listening.
Project HealthDesign is a national research program supporting interdisciplinary teams in the design of next-generation personal health records (PHRs). The project is part of the Pioneer Portfolio of the Robert Wood Johnson Foundation (RWJF) [5], a funding initiative dedicated to sponsoring innovative programs that reach beyond existing paradigms and craft solutions to difficult problems in the realm of human health and healthcare. Project HealthDesign's challenge was to design computer technologies and applications to help people actively engage in managing their own health, to understand the complex data that surrounds their daily lives, and to share this data with clinicians. A program design philosophy encouraged designers to envision PHRs as a suite of personal health-management tools that could draw on data from a variety of sources, including the novel data arising from unique, idiosyncratic clues that people observe in the course of everyday life.
Most individuals don't have a medical background, yet they make the majority of the decisions that affect their health on a day-to-day basis. To make these health decisions effectively, people need access to reliable health information at the point of needat home, school, and worknot just when consulting with a medical expert. In our mobile society, personal health information is scattered across records stored in multiple places and in many formats. Too often that information is out of the individual's reach, or written in dense medical language, or simply does not address what is important to the individual.
At the same time, clinicians often lack access to the rich detail of their patients' daily lives, everyday data that, if collected and put into succinct, reliable, and readable form, could enhance the value of clinical encounters in significant ways. As Project HealthDesign's work evolved, we identified a novel kind of health information that arose in people's everyday lives, personal health details that could not be captured practically in an office visit but that contained a wealth of insight into individuals' health state. We labeled this information "Observations of Daily Living" (ODLs) [6], and ultimately found that if technologies and applications were designed with specific attention to the detail of everyday life, this ODL data could indeed be recorded, collected, interpreted, and shared between people and their healthcare providers.
The process of collecting and sharing ODL data opened clinicians' eyes to a new way of understanding patients in the moment, in the full context of their lives, but it also made it clear that they needed a new way to fold this rich information into the clinical mix. Once clinicians realized how valuable this in-the-moment ODL data could be, they began to develop a new kind of listening skill, a new kind of health communication. Through the processes of collecting and sharing ODLs, Project HealthDesign's grantee teams not only discovered a new form of health data, but also began to develop new ways to use it. Extracting the data's full meaning required a specialized process of interpretation, one that carefully designed digital technology could provide.
The Care Between the Care
Between 2006 and 2012, RWJF funded 14 Project HealthDesign grantee teams from across the country. Each team had a different focusadolescents with chronic illness, children with cystic fibrosis, elders at risk of cognitive decline, premature infants, and othersbut all teams developed applications that used technology to record and analyze useful data from daily life, in order to produce action-oriented feedback for health self-management. Each team worked on an individual project, but Project HealthDesign also brought the teams together to share their experiences and leverage each other's developments. Despite their varied healthcare contexts, each project team found that ODL data gave clinicians a new and powerful means of knowing their patients. It allowed them to "listen" to important details and clues about patient's health, things that happened in the long spaces between clinical visits. What emerged was a richer understanding of what patients actually experience, a technology-enabled means of providing "care between the care."
Millions of Americans suffer from chronic pain linked to common conditions like spine disorders, arthritis, neuropathy, and headaches. To help this population, our project team at the University of Massachusetts Medical School devised an electronic diary for people with chronic pain to document their daily experiences. This self-reported data was collected on a handheld device with a touchscreen that facilitated rapid completion of diary entries throughout the day, wherever the person happened to be. Built on a mobile platform and customized to each user's typical experiences, the application enabled users to record structured observations of their pain experience, treatment, and physical activities throughout the day. The application also provided a menu of options for both patients and providers to display and analyze the data. "Patients with chronic pain have the responsibility of managing medication regimes that can be very complex, confusing, and dangerous," said one team leader. "When a patient comes in once a month or less, it's difficult to get an accurate read on his or her level of pain. They tend to tell me how they feel that day, rather than gauging their pain levels over time." The application did much more than record pain levels; it allowed people to document the context of their pain experience, such as what might have triggered the pain and what patterns of activity might contribute to it.
What this team experienced was a new kind of technology-informed conversation between individuals and healthcare providers, one that enabled people to describe their everyday health experiences with levels of efficiency and specificity that would be far too cumbersome in a face-to-face office visit. "It helped me create a vocabulary to describe the types of pain I experience," said one participant. Not only did the technology compress data over time into a readable and digestible format, it also added credibility to the individual's "vocabulary" by helping guide them to paint the word-pictures that could be understood by their providers and translated into more accurate and effective clinical care.
It would be extremely difficult for a healthcare provider to collect and interpret this much granular detail in a clinical visit for even one patient, much less for an entire caseload. But innovative design of health technology promises to collapse the timeline and compress the data of everyday life into manageable forms that can be shared and understood by both individuals and clinicians. Many of our project teams found that clinical encounters were greatly improved by this kind of technology-enhanced collaboration.
Creating a New Kind of Listening
What began to emerge from work by Project HealthDesign grantee teams was the recognition that one of the main barriers to clear, meaningful clinical conversations was a kind of language differential. Sometimes patients and clinicians were using the same actual words, but those words meant one thing in the patient's worldview and something different in the clinician's worldview. Each person tries to map the phrases of the other into their own worldview. So even if they hear one another they might not comprehend each other's full meaning, which can lead to distorted understanding and inefficient clinical encounters.
Short of sending everyone to medical school or having physicians move in with their patients, it might seem impossible to bridge that gapand this is where health IT enters the frame. With the right kind of approach to application design, patients and clinicians together can create something that neither could accomplish alone. Technologies that help capture the fullness of a person's lifeand efficiently present it to clinicianswill expand and enrich the clinical conversation.
This was the idea behind the Chronology.MD project [7], which focused on patients with Crohn's disease, a chronic and debilitating disorder that is difficult to treat. The team used a participatory design process to develop e-health applications aimed at improving people's management of their disease and at informing shared decision-making with their clinicians [8]. Their team was a diverse group that included a health informatics researcher, an architect, a health services researcher, a nurse practitioner, a physician, and a usability specialist who was also a person with Crohn's disease. Together they designed and developed one application that enabled individuals to record ODLs into a mobile device. The patient-identified ODLs included information about health symptoms, medication taking, activity, sleep, energy, laboratory data, and journaling related to their health and well-being. In addition, an electronic scale and an activity and sleep monitor sent automatic uploads to the mobile device. The project also developed a second application that provided a visual display of the data to help patients and providers understand ODL changes and interactions over time (see Figure 1).
The Chronology.MD project was guided by a design science theoretical framework, which advocates intensive, iterative, user-centered design coupled with continuous evaluation. The team described it this way:
"The intensive participatory design and continuous evaluation methods were critical to developing effective applications. During the year of designing the applications, we used focus groups, personal interviews, usability testing, training observations, and other methods to create and refine the applications. Ongoing input from patients allowed us to adjust and modify our data collection and visualization technologies, and provided us with insight and information that will be useful in the future."
This team recognized the potential for disparity of language and worldview between individuals and clinicians but was able to make significant strides in overcoming that disparity by listening carefully to a diverse set of voices at the very beginning of the design process, then refining and adjusting the design all along the way. By inputting granular data over a long period of time, then having that data correlated and analyzed and fed back to individuals via a visual-display application, patients and clinicians were able to discern patterns of everyday life that were directly affecting the individual's health. Knowledge of those patterns helped people modify their behavior and helped clinicians get a clearer and truer picture of the person's experience.
The results of this approach were important to both patients and their clinical partners. Consider "Jane," a female in her thirties with a severe case of Crohn's disease. As part of Project HealthDesign's Chronology. MD study, Jane was trained to use a mobile device to record ODLs relevant to her condition and then work with her provider to interpret them and adjust treatment accordingly. Using this approach, she saw significant improvement in her condition and her ability to manage it. "Can the study go longer than six months?" she wrote. "Because I am finding this very useful. As a result of sharing this data, I have changed the meds that I was on. My quality of life has gone way up." Jane's condition improved to the point where she no longer needed IV medications and could manage her pain with diet and exercise. "Besides, my doctor told me that my blood levels are the best they have been in years."
Again and again, Project HealthDesign's grantee teams found that by designing and building digital health applications with input from a wide range of disciplines and approaches, and then testing and evaluating those applications in clinical settings, patients and clinicians found new things to listen for and new ways to hear them. They learned how these technologies added a valuable dimension to patient-provider communication, enabling a richer understanding of healthcare and management.
Moving from Information to Knowledge
Our years of work at Project HealthDesign have demonstrated that health technologies can bring a wealth of new, valuable information into the clinical paradigm. We're at a point of revolution in healthcare, where patients have access to vast amounts of health information and where medical knowledge is increasing exponentially. What is needed now is acknowledgment that in order to harness the full power of health technologies, we need to embrace the repurposing of everyday devices and expand the clinical conversation at the same time.
Health, technology, and communication are being interwoven on many levels. Medical information on the Internet has given rise to widely linked communities of patients who are highly informed and highly engaged in their own healthcare. Government regulationsespecially the Meaningful Use standards developed by the Office of the National Coordinator for Health IT (ONC) [9]are providing significant incentives for development of health technologies, many with an emphasis on encouraging patient-reported data. And the consumer market for health technology is increasingly robust and creative.
At Project HealthDesign, we have direct experience to share about a new kind of listening in the moment, a technology-enabled care-between-the-care that promises to significantly improve the healthcare experience for individuals and their providers. Technologies that can capture images, videos, and soundsand have efficient ways of presenting themwill be of even greater value in the future.
This is a time of tremendous opportunity, when markets and regulators and designers all stand to benefit from a reimagination of the roles technology can play in a new era of modern healthcare. People are now able to create new data vocabularies, and everyone in the healthcare system needs to develop the listening skills to understand them. Digital health technologies designed with input from many sources, including patients, are poised to enable a new health language and a greatly expanded notion of the kind of health conversation we are capable of creating. At Project HealthDesign, we believe we have laid the groundwork for this expansion.
References
1. Nosta, J. 2013: The year of digital health. Forbes. Jan. 2, 2013; http://www.forbes.com/sites/johnnosta/2013/01/02/2013-the-year-of-digital-health/
2. http://www.hapilabs.com/products-hapifork.asp
3. Wiltz, C. X2 Biosystems is combating football concussions with data and devices. Medical Device and Diagnostic Industry. Feb. 27, 2013; http://www.mddionline.com/article/x2-biosystemscombating-football-concussions-data-and-devices
4. Brennan, P.F., Downs, S., and Casper, G. Project HealthDesign: Rethinking the power and potential of personal health records. Journal of Biomedical Informatics 43 (2010), 5355.
5. http://rwjf.org/en/about-rwjf/program-areas/pioneer.html
6. http://www.projecthealthdesign.org/resources/observations-of-daily-living
7. http://www.projecthealthdesign.org/projects/round-2-projects/chronologymd
8. Patients with Crohn's Disease report symptoms and behaviors through computer applications, leading to better self-management and provider-patient communication. Agency for Health Care Research and Quality, AHRQ Innovations Exchange. Apr. 20, 2013; http://www.innovations.ahrq.gov/content.aspx?id=3820
9. http://www.healthit.gov/policy-researchers-implementers/meaningful-use
Authors
Patricia Flatley Brennan is a professor at the School of Nursing and College of Engineering at the University of Wisconsin, Madison and national program director of Project HealthDesign. Recently, her work with Project HealthDesign inspired her to cast the vision for and serve as theme leader at the Living Environments Laboratory at the Wisconsin Institute for Discovery.
Wendy Swanberg is a Ph.D. candidate in Mass Communication at the University of Wisconsin, Madison with research emphases on First Amendment history and science journalism in the Cold War era. Recently she was the communications coordinator for Project HealthDesign. She has also spent the past five years writing, editing, and helping build the Center for Journalism Ethics at UW, Madison.
Figures
Figure 1. In the Chronology.MD project, ODL data collected by patients was converted into a visual display, allowing patients and providers to see patterns and interactions over time
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