What are Personal Health Records? There are many different meanings associated with the term “Personal Health Record.” The many flavors of “PHR” run the gamut from gadgets that track vital signs to Web-based platforms that store health information like Google Health and Microsoft HealthVault. Even the term “PHR” is disputed—experts in the field have used other labels to describe PHRs, including personal health platform (PHP), personal health application (PHA), and personally-controlled health record system (PCHRS). For the purposes of this Web feature, a “personal health record” is a platform that gathers patient data from multiple sources and hosts a suite of applications that use those data to help patients understand and improve their health. This is a complex concept—one that this Web feature seeks to unpack and illuminate.
While there is no definitive definition of a personal health record, there are several characteristics and functionalities that make PHRs unique tools for patient engagement and health-related decision-making. In order to understand the full power and potential of personal health records, it is useful to take a step back and examine their origin. This chapter sets the stage for this discussion by tracing the development of PHRs from static repositories for health information into dynamic and customized platforms for patient empowerment. It draws on some of the earliest work in the field of personal health records and outlines the features and functionalities common to the first personal health records.
Medical records are as old as the practice of medicine itself. Historically, medical records were paper files created, owned, and maintained by doctors. As such, they were designed to meet the needs of medical providers. They were based on the information that physicians, not patients, deemed relevant to the clinical encounter, such as the patient’s medical history, conditions, and medications.
As computer technology became more prevalent in medical practice throughout the late1990s and early 2000s, some providers began converting their paper files into electronic medical records. Electronic Medical Records (EMRs) are essentially digitized versions of their paper-based counterparts—designed by and meant for doctors, nurses, and hospital staff. Importantly, however, the advent of the EMR made it easier for patients to access to their medical records, often through online Web portals. EMR Web portals are windows into the medical record of the hosting institution, usually a hospital or health system. These portals have their limitations, but they have also initiated an important shift in consumer access and engagement with personal health information. Through EMR Web portals, patients began to see the value in knowing what is in their medical record and having the same access to the data that drive their physicians’ decisions regarding their care
The transition from paper-based files to EMRs was not the only force driving the evolution of personal health records. A small but potent push came from patients demanding access to and control over their personal health information occurred simultaneously and in grass-roots fashion. Whereas the medical delivery system evolved slowly, stand-alone devices—the first offerings to be called personal health records—started sprouting up to cater to this new cadre of engaged “patient-consumers”. Patient-consumers wanted to see their medical information, and see it side by side with the information they considered relevant: their personal health data ranging from blood glucose levels to diet and exercise habits. The Connecting Americans to their Health Care Conference highlighted the extent to which consumer preferences inspired and shaped the development of PHRs. First-generation PHRs have yet to experience wide-spread uptake, due in part to their limited interaction with the health care delivery system. Furthermore, the market of health-engaged consumers at the time was small and decentralized. But the desire for devices and applications that made health information more relevant to patients would prove critical to the evolution of PHRs.
The technical changes taking place in health care delivery systems, together with the swell of patient demand for personalized health record-keeping, led the “co-evolution” of institutional and free-standing PHRs. Some common themes emerged as a result of this co-evolution, including a loose consensus around the basic characteristics, functionalities, and limitations of PHRs.
One of the defining characteristics of PHRs is the centrality of the patient. Historically, providers have had more knowledge, power, and information than patients. PHRs alter the dynamic of the doctor-patient relationship by allowing patients more convenient access to information. The doctor is still the expert—and is still the only one that can write a prescription or order a test—but PHRs do a lot to alleviate the information imbalance. Equipped with an understanding of their own data, patients can become important and active managers—co-captains—of their health. PHRs place patients at the center of health-related decisions as both the source of health data and the stakeholder-in-chief of their medical care. No longer devised solely for the provider—but rather for the patient—PHRs are decidedly patient-centric. Part 1 of "Personal Health Records in a Digital Age," a four-part podcast series funded by the Pioneer Portfolio, touches on patient-centeredness and other defining features of personal health records, such as portability and convenience.
While there was some early agreement about common PHR functionalities, PHRs took on many different forms in order to meet the variegated needs of patient-consumers. The most advanced of these protean PHRs enabled patients to access their medical records, engage in secure patient-provider communication, and track and manage their medications. Depending on their specific purpose, first-generation PHRs also allowed patients to enter and track their cholesterol data, receive notifications regarding preventative screenings, or make entries about mood or pain episodes in a patient diary.
Finally, the limitations of first-generation PHRs became increasingly evident during this frenzy of development. The final report from the Personal Health Working Group of Connecting for Health describes one reason why the very first PHRs had relatively little market penetration: “Without a clinician on the other end of the application continually providing advice, making modifications to prescriptions or otherwise [helping]...them better manage their care,” these applications failed to provide a substantial and immediate benefit to patients. Even if the patient manually enters all their health information and keeps it up to date (a feat in and of itself), there is no way for the relevant care providers to access that information if it is housed in a stand-alone PHR.
Even PHRs that are tethered to the health care delivery system have their limitations. A hospital might allow a patient to view her medical records through a Web portal, and perhaps even provide applications that allow for secure messaging and patient-sourced data entry. But PHRs are of limited value unless that information follows that patient through all of the different medical encounters she faces (clinical and otherwise). For example, a diabetic patient with a care team and a PHR at one hospital does not get significant benefits from that repository of information unless it is seamlessly communicated to the patient’s pharmacy, primary care physician, and other care providers. A patient could potentially have multiple PHRs—one each for two chronic conditions and one through their primary care provider—none of which interact with each other or stay with the patient if they switch providers. Imagine the complexity and redundancy!
In order to achieve their full potential, PHRs must be capable of two-way electronic communication and information exchange with the many disparate sources of health data that exist in our fragmented health care system. The final report from the Personal Health Working Group of Connecting for Health and the subsequent Connecting for Health report on “Policies for Electronic Information Sharing” underscore this point, and give a good sense of how PHRs have evolved and changed over the last decade. These reports also provide a snapshot of the prevailing consensus on PHR functionalities and limitations at the time of their writing.
PHRs have changed and developed at a strikingly rapid rate over the course of the past decade. While this fact makes it difficult to provide a perfectly chronological historical narrative on the evolution of PHRs, it also supports the belief among the staff on the Pioneer Portfolio that the transformation for PHRs is still far from complete. One of the crucial challenges for PHRs is to produce actionable information, as opposed to a messy swath of data in an electronic file drawer. PHRs must collect and store data, yes. But they also must be paired with sophisticated tools to help track and organize information, highlight trends, and deliver useful feedback. The Pioneer Portfolio’s vision for personal health records is that every patient might have secure and unfettered access to all of their health information, paired with simple yet sophisticated tools to interpret and act on that information in order to lead healthier lives. While the Portfolio does not have a monopoly on envisioning the future of PHRs, our experience leads us to believe that patients will only be able to realize the full potential of PHRs when they can take an active role in improving the care they receive and their quality of life. Chapter 2 of this feature highlights Project HealthDesign and its approach to fulfilling this vision for personal health records.