According to a recent discussion paper released by the Institute of Medicine, most people who receive healthcare in the United States recognize that the system is complicated and fragmented. What they are less likely to know is that opportunities to learn from the care provided in hospitals, clinics, and doctors’ offices are most often lost.
As healthcare records move to electronic systems, the data routinely collected as part of medical care (such as blood pressure measurements, weight, medications lists, disease diagnoses, and past medical histories) hold the promise to dramatically increase the opportunities for learning and improving care on a national scale. Turning data collected at the time of care into knowledge that can be used in clinical practice is essential if we are to achieve a learning health system—a system that continuously and seamlessly uses healthcare data from across the entire system to answer important questions that matter to patients and their healthcare providers, the paper says.
Collecting routine data with every patient encounter simply doesn’t happen enough, says Michael D. Murray, Pharm.D., Regenstrief Institute investigator and Purdue University professor who led the team of experts that wrote the paper. “That’s the problem and the thing we wanted to get under the public’s nose is that there is a great benefit to sharing this data.”
Such information could be used to better monitor diseases and outbreaks, target medical services where they are most helpful, reduce unnecessary testing and treatments, prevent medical errors, and accelerate medical research and delivery of new treatments, and the paper provides examples where data collection helped in each of these areas.
In fact, as Shaun Grannis, M.D., director of the Indiana Center of Excellence in Public Health Informatics at the Regenstrief Institute, told me a few months ago, the Indiana Network for Patient Care (INPC), a city-wide clinical informatics network, uses routinely collected registration data (age, gender, reason for visit, etc.) that comes from emergency departments (EDs) and other healthcare organizations to provide public health officials in the state with early warning of outbreaks of influenza and other communicable diseases. It will also let them know about weather-related health conditions or food-borne illnesses, enabling immediate actions including the alerting of appropriate medical personnel and policymakers.
The paper, titled "Making the Case for Continuous Learning From Routinely Collected Data," notes that new technologies enable the collection, storage, and analysis of vast amounts of data. Consumers experience the impact of these “big data” every day—from smartphones that collect information about location and behaviors to Internet browsers that serve up personalized ads based on previous shopping habits. As healthcare becomes more digital, clinical datasets are also becoming larger and more numerous. These data, gathered largely through the normal course of receiving healthcare, provide great potential for extracting useful knowledge to achieve the “triple aim” in healthcare—better care for individuals, better health for all, and greater value for dollars spent.
And isn’t this one of the main ideas behind health information exchanges (HIEs)? Sharing data at every patient encounter will lead to less duplication of testing, reduced operational costs through gained efficiencies and automation of manual administrative tasks, and improved public health reporting and monitoring. With an HIE, for example, if a patient goes to different medical systems in the same region for care, and those places can share laboratory data, one facility might not have to do repeat tests and expensive radiological scans if the first facility already took those steps.
Of course, there are concerns with data sharing, mainly relating to security. Privacy challenges are a huge concern, says Murray. There are laws that set standards for the use of clinical data for research and measures like the removal of names, addresses and other identifying information to protect a patient's confidentiality. Still, surveys show the privacy and security of electronic data are among patients' top concerns about data sharing.
Murray added that a number of surveys suggest when patients are aware their data can help them in their care as well as in other patients’ care, they might be more willing to share. He admits that it’s a framing question, but when it is framed in such a way, patients become very willing to help themselves and the population in general.
Murray told me he really wants this discussion paper to be the key that ignites the engine on this movement. He has confidence that organizations such as the Patient-Centered Outcomes Research Institute (PCORI), established under the Affordable Care Act to conduct research to provide information about the best available evidence to help patients and their providers make more informed decisions, will bring everyone to the table together to share a vision of what they want out of healthcare in general.
PCORI recently issued two funding announcements for up to $68 million to support development of a National Patient-Centered Clinical Research Network, which would unite patients, researchers, and healthcare systems, and support rapid, effective observational and interventional studies with active participation from a broad patient population.
Patient centeredness is going to be important to allow patients to participate at a better level, and that’s what it comes down to, Murray says. No one will deny the security and privacy issues centered around this area; but as we continue to improve patient engagement and keep making patients a greater part of the overall healthcare picture, they will be more likely to comfortably share their information, knowing it’s for a greater good.