Chapter 1 of this Web feature laid out the characteristics, functionalities, and limitations of the earliest products to be called personal health records. First-generation PHRs were primarily focused on giving patients access to institutional medical records or to freestanding collections of personal health data. These early PHRs were not portable, and they rarely communicated with health care providers, pharmacies and other health care entities. In an effort to transcend these limitations, the Pioneer Portfolio launched Project HealthDesign—a $10 million national program of the Robert Wood Johnson Foundation. The objective of Project HealthDesign, introduced in 2006, is to stimulate innovation in the field of personal health records. This chapter traces the development of Project HealthDesign and chronicles the evolution of the PHR into a customized platform for patients to better understand and manage their own health.
Project HealthDesign seeks to re-imagine PHRs and define a broader vision for their full potential, as described in E-Primer #1, “A New Vision for Personal Health Records.” Within Project HealthDesign’s framework, the next generation of PHRs would do several things differently than their predecessors. Whereas first-generation PHRs functioned primarily as data repositories, Project HealthDesign views PHRs as springboards for action and improved health decision-making. Furthermore, the program emphasizes the importance of placing patients at the center of the design process. Project HealthDesign’s perspective is that PHRs should prioritize the health needs and personal preferences of the patient, and not simply adopt the procedures or contours of medical practice. Finally, the program envisions an integrated network of PHR applications that can seamlessly operate on a common platform, thereby eclipsing some of the pitfalls of first-generation PHRs. For an overview of the program and its vision for PHRs, listen to Part 2 of "Personal Health Records in a Digital Age," a four-part podcast series funded by the Pioneer Portfolio.
Project HealthDesign challenged nine interdisciplinary grantee teams to imagine PHRs not as static repositories for medical data, but as dynamic and highly personalized vehicles for improving health. One of the primary limitations of first-generation PHRs was their inability to interpret the data they collected and stored. Project HealthDesign grantees were asked to develop designs and prototypes that would enable patients to make more informed decisions by providing real-time, customized feedback to patients—rather than merely allowing patients to view their medical record.
For example: Imagine that you have diabetes. You must take daily measurements and manage a complex array of information—blood glucose levels, medications, weight, blood pressure, and diet and exercise regimens—are just a few examples. Suppose your glucometer and your bathroom scale can wirelessly transmit precise readings directly to your cell phone, which hosts a PHR application for medication management. Your PHR can also send you medication reminders, and it works with your pharmacy to manage your prescription refills. All of this helps to alleviate the complexity. Now imagine that your PHR application can actually interpret the information that it collects and stores. It notices that you consistently have low blood sugar in the evenings and recommends an adjustment to your medication schedule. It shows you a graph representing the trend over the last three weeks, and suggests that the change might be due to your new-found passion for mid-day jogs. You get approval to adjust the medication from your doctor by e-mail, because she is able to access the same data. The next day, you feel better and you enjoy your dinner a little bit more than the day before. This is the kind of clear, actionable information patients need to help them make better health decisions, manage their own health and improve their lives. As the Project HealthDesign vignettes illustrate, it’s not the record that is important—it’s what you do with it.
Secondly, Project HealthDesign adopted the principles of user-centered design described by Rodriquez et al. in “Patient Centered Design: The Potential of User-Centered Design in Personal Health Records.” This patient-centric perspective suggests that PHR technologies should be grounded in the understanding of the daily lives and health challenges of the individuals they are designed to support. Each Project HealthDesign team relied on feedback from patient focus groups extensively, which helped them design prototypes with real consumer appeal. In the previous example, the PHR application meshed with the tools that the patient already relied upon in his everyday life, like the cell phone and the bathroom scale. One Project HealthDesign team discovered that patients do not want to use a separate calendar to schedule their cancer treatments; they want tools that can sync with the calendar they already use to coordinate their lives. As Amy Tenderich points out in her keynote address at the Project HealthDesign Expo, PHR devices should fit people’s habits, preferences and styles in addition to the particulars of their health conditions.
In a further effort to put the patient at the center of the design and development of PHR applications, Project HealthDesign teams moved beyond traditional data sources and began collecting the data they found was most relevant to patients. Termed “observations of daily living,” these data from patients’ lives—pain symptoms, sleep patterns, actual medication intake—provide the foundation for personalized analysis and specifically tailored recommendations like the one to adjust the insulin dosage in the previous example. Read more about observations of daily living in Chapter 3 of this feature, and in E-Primer #3 from Project HealthDesign, “Health in Everyday Living.”
A third notion guiding the work of Project HealthDesign is that PHR applications can operate more efficiently and more effectively on a “common platform”—a set of software components that provide the same functional capabilities to a variety of personal health applications. For example, nearly all of the grantee teams designed applications with features like medication list management, calendaring and the ability to store observations captured in the course of daily life. Rather than ask each grantee to develop novel software packages to support those capabilities—a time intensive and costly endeavor—Project HealthDesign contracted with Sujansky and Associates to develop and implement the technical requirements of a common platform. In this sense, Project HealthDesign required the nine grantee teams to predicate their work on an ideal, hypothetical future in which open-source software platforms allow innovators to focus on designing applications.
Separating the development of the platform from the design of the applications had several advantages for the Project HealthDesign teams. First, it allowed the teams to experiment with new data sources and structures, like observations of daily living, without worrying about technical barriers. Second, the presupposed existence of a common platform reduced implementation time and would have, in theory, enhanced the interoperability among the teams’ personal health applications. Although there were only nine teams involved with Project HealthDesign, future platforms would later encourage competition among the whole marketplace of third-party developers to design applications that meet the highly diverse needs and preferences of the patient population. One of the objectives for the first phase of the program was to demonstrate the feasibility of a system of personal health information management tools that seamlessly operate on a common platform. In this model, your medication management application might be designed specifically for patients with hypertension, but it would fluidly interface with the calendar application the rest of your family uses. Read more about common platforms in Chapter 7 of this feature, and in a post from Pioneering Ideas, 'A Few Take-Aways From the Project HealthDesign Conference.'
The Project HealthDesign teams were by no means the only innovators working in the PHR arena. Shortly after the program got underway, Google, Dossia and Microsoft each launched their own PHR platforms. That the marketplace responded so quickly and so exuberantly to the need for a common platform—which originally was a hypothetical instrument to fuel innovation among the Project HealthDesign grantees—is indicative of the milieu surrounding the grantees’ work. The first phase of Project HealthDesign unfolded against a backdrop of an exponentially expanding field. Furthermore, the entrance of these major players to the field of personal health records focused increasing attention on related issues such as liability, privacy and reimbursement, which we cover in Chapter 5 and Chapter 6 of this feature. The changing landscape also illustrates that Project HealthDesign is just the next step in the evolution of PHRs discussed in Chapter 1. The concepts explored by Project HealthDesign advanced the vision for personal health records, but, as we detail in Chapter 7, that evolution is far from complete.