Health in Everyday Living
Download "Health in Everyday Living" in pdf format.
Through applications that gather health information from everyday life, next- generation personal health records provide individuals with new tools to help them engage in and manage their health.
Through applications that gather health information from everyday life, next- generation personal health records provide individuals with new tools to help them engage in and manage their health.
What kind of information should exist in a health record? And, who determines what should be done with that information? These are essential questions that underlie the development of personal health records (PHRs) and differentiate them from clinical or other kinds of health records.
The first “health record,” as originally conceived, was a paper-based file that was designed, owned and maintained to record medical information in a clinical setting. As such, the record was provider-centric, consisting largely of notes inscribed by a doctor of what he or she thought was important. Its primary purpose was to assist the provider in the care process.
When health providers began to shift from paper-based to electronic health records (EHRs), the EHRs became digitized versions of their paper predecessors, useful and instantly available, but still based on information that the provider, not the patient, deemed necessary.
In recent years, another “health record” was introduced and was touted as a personal health record. It made use of the new electronic record technology to provide patients with Web access to some information about their own health. These records offered a variety of services, from access to test results to the ability to chat with a provider online. However, they were owned by a health care institution – clinic, hospital, physician or health care provider—and what sort of information the user had access to was also determined by the institution and its needs.
Next-generation PHRs change all that. Because PHRs are designed for individual users to help them engage in their own health management, the information they contain can be radically different from EHRs or first-generation PHRs, and can be used for entirely different purposes. While there are areas of clear overlap—both an EHR and a PHR should contain accurate data on current lab values and medications, for example—they are aimed at different users and designed for different purposes.
Nowhere is this truer than with the recording of information related to observations of daily living (ODL). Collection and use of ODL information – which includes information on such activities and experiences as sleep, diet, exercise, mood and adherence to medication regimens – is one area that is genuinely user-directed, both in the kind of information that is contained in the record and the health-related activities that stem from it.
This is one of the key lessons being discovered by Project HealthDesign, a national program of the Robert Wood Johnson Foundation (RWJF) that is designing next-generation PHR systems. Patients testing PHR tools under Project HealthDesign grants are giving researchers important feedback on what kind of ODLs they wish to provide and what information they prefer to keep to themselves. The difference in its conception – gathering information that is important to individuals, but not necessarily collected in a clinical setting – may be the single most important defining feature of next-generation PHRs.
According to Patricia Flatley Brennan, R.N., Ph.D., professor of Nursing and Industrial Engineering at the University of Wisconsin-Madison and director of Project HealthDesign, patients can gather and analyze their own ODL data via PHRs to determine ways to live healthier, rather than simply to manage their illnesses.
Consider the distinction this way: the traditional health record and the EHR revolve around data collected at (and important to) the clinical episode. But people don’t live from clinical episode to clinical episode – and health-related information, such as whether one’s stress is elevated due to family or work pressures or whether one’s chronic pain spikes with a sudden change in temperature (which would never make it into a traditional health record), are just as important to many people as standard clinical data are to providers.
The kind of experience-based information the patient can add to a PHR creates a much richer portrait. “A person benefits in two key ways: by getting data that can serve as useful feedback that he or she can use to shape daily decisions, and by the gathering of data that allow that person to have a more productive conversation with the clinician,” says Stephen Downs, S.M., senior program officer and deputy director of the Health Group at RWJF, which supports Project HealthDesign along with the California HealthCare Foundation.
ODL data can take many forms – from quantitative measures of sleep (e.g., sensors indicating how long the patient slept and how much the patient moved during the night) to qualitative self-reports (e.g., the patient reporting his or her own mood). Some PHRs are experimenting with ways to convert typically qualitative metrics into numeric, quantitative ones.
Collection of ODL data through PHRs gives both clinicians and patients’ insights that are unattainable if records contain only data captured in clinical settings. They also allow different kinds of insights; Project HealthDesign researchers are learning that patients would like to record or know information that is not generally collected during clinical encounters. These patient-originated, patient-defined data present the opportunity to create a fuller picture of health – both individually, so patients can look at analyses of their own trend information, and in the aggregate, so patients can compare their symptoms with those of other patients with similar disease and condition profiles, or so disease outbreaks can be detected faster at a population level.
“Indeed, patients are a largely untapped resource of medical data,” says Farzad Mostashari, M.D., M.S.P.H., assistant commissioner, Epidemiology Services with the New York City Department of Health and Mental Hygiene. Mostashari, who is an advisor to Project HealthDesign, envisions a system in which “tethered” PHRs, linked to a system-based EHR, could collect information from vast numbers of people quickly – for instance, if a large number of residents of one neighborhood reported gastric distress or flu-like symptoms at once. “It would be nice to put these tools to use for public health surveillance,” he says.
Similarly, individual patients could learn from their peers, says James Heywood, co-founder of PatientsLikeMe, a treatment-and outcome-sharing Web site for people with life-changing diseases. “People with diseases have an incredible amount of information to share, and other people with similar diseases can benefit enormously from that information,” Heywood says. “The challenge is to take all the information that patients can offer and compress it into a usable format so others can use it.”
This prospect, while interesting and potentially clinically valuable, presents ethical, legal and social issues that demand attention. Patient-originated data are not considered as confidential, legally speaking, as are data in a traditional health record. They do not fall under the protection of the Health Insurance Portability and Accountability Act. When ODL data are entered into a PHR by whatever means (either actively or passively), people will need to understand that traditional definitions of medical privacy may no longer be at work, and PHR developers will need to offer individuals a means to protect portions of their information if they feel they need it.
Outlook for PHRs
While there are distinct public health and clinical research opportunities for PHRs, they remain first and foremost a tool to engage individuals in their own health management. Thus, as Project HealthDesign creates a vision for next-generation PHRs, it is the individual use, not the collective one, that is currently being emphasized.
Because ODL data are often subjective, the broader uses are difficult to achieve. But subjective data can be of great utility to individuals – as long as those data are measured and reported consistently. For instance, if one is self-reporting pain on a zeroto- 10 scale, it doesn’t matter if one individual’s threshold for pain is higher than another’s; what matters is how each person rates pain on his or her own personal scale compared with a previous period of time. A sophisticated PHR could pick up this information and make sense of it – and also integrate data from multiple observations to create a meaningful narrative for the individual.
It’s a big challenge, however, because too many data that are not properly integrated can come across to patients and providers as noise, not useful information. Smart, interpretive tools that turn data into usable information can help to find real indicators amidst the noise. Brennan draws a distinction between data that need to be stored in order to analyze trends and data that are immediately usable and then can be discarded. “This could revolutionize the way people relate to their health,” she says. “Say a person with asthma walks into a meadow that has a high pollen count. A sensor can read the pollen count, and send an alert to the user to tell him to take his inhaler, and then delete the information; we don’t need to remember what the pollen count was, only that an event triggered a response.”
Project HealthDesign’s grantees are showing the exciting potential of how capturing ODLs can help people to better manage their health. But, this work is still in an early stage. Many interesting challenges lie ahead. As PHRs evolve to capture more ODL data, additional research will be needed to develop methods for finding meaningful indicators amidst the noise. Clinicians will need to figure out how to glean real information from the data to gain fuller pictures of their patients’ health, and people will wrestle with decisions about how much information about themselves they want to be collected, stored and shared.
