As health care records move to electronic systems, there is an opportunity to compile information taken from individuals and use it to conduct large studies that advance the entire health care system, said Michael D. Murray, PharmD, MPH, the Regenstrief Institute investigator and Purdue University professor who led the team of experts that wrote the paper.
"Every health care encounter provides not only an opportunity to improve the health of the individual patient, but also to help improve the care of others," said Murray, who is the executive director of the Regenstrief Center for Healthcare Effectiveness Research at the Regenstrief Institute. "Currently, the information collected like blood pressure, weight, medications used, disease diagnoses and medical history are used only to inform decisions for that individual patient. We are missing a tremendous opportunity to turn our health care system into one that learns from each care experience and leads to better and more affordable care for all."
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, he said.
"Patient and provider engagement in sharing data is the key to realizing this potential," said Murray, who also is a distinguished professor of pharmacy practice and endowed chair of medication safety at Purdue. "We want the public to know that this can be done in a very secure way that maintains their privacy. We hope that a better understanding of what could be achieved leads to a greater number of people approving the use of their data for research and health care improvement."
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.
In addition to raising awareness of the benefits of secure data sharing, better integration of data and more trained professionals to analyze large data sets are needed, he said.
The discussion paper, "Making the Case for Continuous Learning From Routinely Collected Data," details the various sources of clinical data available and case studies of how this information can be used. The authors were participants in the Clinical Effectiveness Research Innovation Collaborative of the Institute of Medicine Roundtable on Value & Science-Driven Health Care.