Patricia Flatley Brennan, R.N., Ph.D., Project HealthDesign Director
I want to thank ONC for the challenging yet thoughtful goals set forth in the Federal Health Information Technology Strategic Plan. This vision for the future of health IT will surely encourage everyone from clinicians and provider groups to researchers and developers to think—together—how we might best lead the country forward into a new, more connected era of health that considers both clinical health care and health in everyday living.
Goals III and IV are the most relevant to my work with Project HealthDesign, a Robert Wood Johnson Foundation national project that examines the potential for PHRs and observations of daily living (ODLs) to help people live healthier lives and get better care. We believe that ODLs, or data that reflect patients’ perceptions of their everyday health, serve to inform individuals about their health and help them take action or make decisions about their health. Our five current project teams are also working to see how ODL data (e.g., information about pain, mood, sleep, etc.) could help inform better clinical decision-making by allowing clinicians a peek into patients’ everyday lives.
As is suggested in Goal III, inspiring patient trust in the health information ecosystem is vital. We must use many different approaches in order to educate individuals about the risks and consequences of opting in or out of sharing personal health information. Additionally, efficient mechanisms that would allow individuals to access, review and update their personal health information permissions are needed. Individuals must be able to verify that their wishes have been documented and implemented as desired.
When considering Goal IV, we must not forget that health occurs outside the context of the health care system as well as within it. Every day, factors outside the system impact individuals’ abilities to manage their health. Additionally, the term “patient-centered” can mean different things to different people. Perhaps the most common understanding is that the patient is the target of health care. A more expansive definition of the term defines the patient as the source and center of all health. I find the latter to be a more appropriate definition given our collective mission to improve health and reduce the burden of disease management. We must plan for and implement health IT that encompasses both definitions.
Project HealthDesign has shown that individuals are ready to become involved in our work with health IT. For example, participants in our teams’ studies have been eager to help us improve our PHR tools, including applications that track observations of daily living (ODLs). We have also found that as the participants provided this type of feedback, they became more aware of how these tools could help them improve or manage their health.
As we work toward a modern health information ecosystem, we must take into account many different types of patient-generated health information. Some patient-generated health information results from the clinician’s desire to know information about signs and symptoms experienced at home. Patients’ individual perspectives on health create another type of patient-generated health information: observations of daily living (ODLs). Health data generated by caregivers (e.g., parents of infants and caretakers of the elderly) are a third type of patient-generated data. Environmental factors that affect one or more people (e.g., pollen count, particulates in the air, radiation levels) comprise a fourth category.
Our project teams are finding that it is important to incorporate patient-generated data into the clinical workflow in ways that minimize the burden on the clinician. Early feedback from one of our teams suggests that clinicians do value patient-generated data, but that the ODLs a clinician values might be different from the ODLs a patient values.
Truly patient-centered care has the potential to revolutionize health care from both the patient and provider perspectives. Capitalizing on this new paradigm will require new processes and tools. We must remember the power of an individual’s unique perspective on his or her own health and equip patients to engage in these types of conversations as we plan toward the future of health IT.
This comment was submitted to ONC in response to the recently released Federal Health IT Strategic Plan. To read the Strategic Plan or other comments on the plan, please visit the Health IT Buzz blog.