June 2013

EHR Data Power Learning Health System
By Annie Macios
For The Record
Vol. 25 No. 9 P. 26

Imagine going to a doctor’s appointment and having your medical information already available to various departments because the facility featured an EHR that was standardized and interoperable throughout its health system. Now imagine harnessing the valuable information in millions of those standardized, anonymized records to provide quality decision-making information to health care practitioners and patients alike.

Joseph Kanter, founder and chairman of the Joseph H. Kanter Family Foundation and Health Legacy Partnership, has done more than imagined that scenario; he’s invested a vast amount of personal time and funding to help achieve that goal. Along the way, he’s garnered the support of major health organizations and Congress.

Skeptics may ask why someone would take on such a seemingly huge undertaking. Kanter says his personal experience in making critical decisions about his own health as well as his success in the free enterprise system spurred him to seek a solution that would ensure the US health care system could dramatically improve the way physicians make decisions regarding patient care.

Focusing on the HITECH Act portions of the ARRA, Congress passed a bill to allot $30 billion for health care, which was targeted primarily for reimbursing physicians and hospitals for costs associated with the purchase and implementation of EHRs. It was envisioned that these EHRs would have some sort of standardization that would enable them to be interoperable and thus provide usable data for research.

Congress specified that the Patient-Centered Outcomes Research Institute (PCORI), a nonprofit, 501c1 organization established through the Patient Protection and Affordable Care Act, would be authorized to fund comparative effectiveness research that would help improve clinical decision making and, among other tasks, to develop methodologies for this research.

A Learned System
Seeing that establishing a standardized system was not moving ahead as expected, the Kanter Family Foundation formed an agreement with the Agency for Healthcare Research and Quality, marking the organization’s first partnership with a private foundation, to develop the Learning Health System (LHS), whose goal is to fulfill the original mission of creating this valuable database. Kanter says such a system would empower researchers, clinicians, and patients alike with scientific knowledge—drawn from millions of real-world health experiences captured in EHRs—of what works best for every disease and every patient.

According to Kanter, in the LHS, a simple method would strip patient names from the EHR and assign a national LHS number. Patient records would remain in physician offices, but instead of being stored in files, they would be stored in the cloud. No one would be permitted to view patient names, only their LHS numbers. If researchers needed more information on a particular file, they could obtain the data by contacting the original physician.

Richard Tannen, MD, a Kanter Family Foundation board member and professor at the University of Pennsylvania Perelman School of Medicine, determined that 50 million records would be the minimum required to make the LHS a reality. His research, titled “What Works Best in Every Disease,” concludes that real-world health experiences captured in millions of EHRs can produce information comparable with what currently is considered the data gold standard: randomized clinical trials. Not only that, by applying vision and creativity, the EHR data can surpass the richness found in clinical trial outcome results.

While collecting data from various systems may seem daunting, Kanter believes otherwise. “There are various methods to collect and remove data and put it in a standardized record, but we must start from scratch,” he says. “It is easy to remove information from 20 to 30 databases, eliminate the name, and attach a number to the individual health record. Then researchers can download a specific sector or search a specific disease and evaluate outcomes, compare successful cases, as well as determine what modalities might not have worked based on the detailed information from the EHR and do it all in a common, understandable language.”

It’s Your Record
Patient involvement is a central component of the LHS. Going back to the beginning of medicine, Kanter says physicians have not come up with an efficient methodology to transfer information from one generation to the next. With the LHS, patients will have access to the EHR, enabling them to be involved in the maintenance of their health histories. For example, they’ll be able to record important details such as whether they complied with physician orders or obtained follow-up care.

In the LHS, physician and patient actions will be documented in a language each can understand. As a result, patient viewpoints and physician recommendations will be regarded as a tool to help future generations evaluate care options.

Kanter believes the public needs to be educated on the value and knowledge that can be gained from using resources such as the LHS to make scientific decisions about their care. In Kanter’s estimation, as many as 80% of health care decisions eschew scientific evidence in favor of anecdotal evidence.

“That is what we can’t get across to patients: the details of how a doctor makes decisions and the fact that he doesn’t have the scientific information to do so, so he uses anecdotal evidence,” he says. “Many prescribed remedies do work, but in this information age, it is almost criminal that doctors are missing out on not just medical information but also outcomes, comorbidity factors, and other details to help in scientific-based decision making.”

Kanter cites the leading role technology vendors play in developing interoperable EHR systems. “In a free enterprise system, which I believe in, each vendor selling an EHR is competing. Therefore, when PCORI comes and asks them to meet certain standards, vendors have felt standardizing would take away their competitive edge. But you can’t build an LHS without standardization,” he says. “While the vendors have the right to compete, the fact is that $9 billion has already been spent with 40 vendors that can’t produce scientific results, so something has to be done to standardize. It is important that we do standardize and also important to have the public and Congress behind the need.”

The recent suggestion by four senators to stop funding nonstandardized EHRs suggests the issue is becoming prominent, Kanter says.

Strength in Numbers
The Kanter Foundation believes a coalition rather than a singular effort from one individual or organization is the only way to advance the LHS concept. As such, it established the LHS Coalition composed of 80 to 100 independent corporations anxious to see an LHS database get off the ground.

“All I want is to see an LHS. I don’t care who does it because we can’t have a modern health care system unless we are using all the modern technology available,” Kanter says. “By utilizing bipartisan consensus, the free enterprise system, and ensuring the confidentiality of EHRs by stripping the patient name, I believe it can happen.”

— Annie Macios is a freelance writer based in Calgary, Alberta, Canada.