When President George W. Bush appointed me as the nation’s first health information "czar" in 2004, my top priority was to ensure that Americans had access to their personal health information.
Armed with this information, consumers could manage their health, shop for the best prices, ensure that every clinician knew their history and get access to the best treatments. Simply put, I believed that people would live longer and healthier lives with their health information in hand. The health-care system had a stake in this as well. Sharing information about patients has the potential to reduce duplication, wasteful treatments, improper care and errors. Up to a third of health spending — a startling $1 trillion dollars a year — could potentially be saved by making healthcare more efficient and higher in quality.
In 2009, as part of the stimulus bill to fight the great recession, Congress allocated $35 billion to help hospitals and doctors install electronic health records. These tools quickly became ubiquitous — any person who has visited a doctor has seen how much the computer screen and keyboard are part of the visit.
These tools have eliminated most paper and improved the information clinicians use, but they have failed miserably in bringing information to patients and consumers. In the rush to get every hospital and doctor online, we sacrificed making these tools technically capable of sharing information and didn’t say legally that health information belongs to the people whose bodies it comes from. Certainly, every health system had a web portal for consumers to view their data, but these are rarely used and hardly useful for most people.
Things are changing now. The bill that Congress passed in 2016 to modernize pharmaceutical development (21st Century Cures Act) also required that the government make it illegal to block information sharing.
This past February, after two years of deliberation, the Trump administration released proposed rules that require hospitals and health plans to open secured machine-to-machine portals for information to be shared using common standards so it can be available to smartphones and other devices. It also announced real penalties if a technology company blocks a consumer from getting access to their data.
These rules, if implemented as proposed, will transform the experience of consumers. We will finally be able to gather all of our health information in one place and make sense of it. If we want to switch physicians, hospitals or health plans, our data will move with us and we won’t have to fear retaliation.
When we arrive at an emergency room, our information will be there. We will be able to use our personal information to pick the physician or health system that matches our needs. We can discover what new genetic therapies or advanced clinical trials might hold unique promise for us. These proposed rules are fundamentally necessary if we want to improve our health.
The proposed rules are open for comment now and it is no surprise that technology companies, hospitals and physician associations are fighting them. They drape their criticisms in looking out for the patient, but what they aren’t saying is that they make a fortune off of the current system.
Information sharing would make it easy for hospitals to switch technology vendors, driving down the fees and license payments to those companies. Information sharing would make it easy for patients to switch hospitals and not fear showing up someplace ill without their information. Information sharing would allow patients to see the detailed notes physicians write about them, causing more work and headaches for doctors. The vested interests like the system just the way it is — with them in control of health information — and view consumers getting their data as a threat.
People with their health information have a real chance of being healthier and living longer. A health-care system filled with consumers armed with their health information will be more efficient and higher in quality. With all of the challenges we have in health care, there is no reason to deny consumers their health information any longer. Help me encourage the Department of Health and Human Services, the Centers for Medicare and Medicare Services and the Office of the National Coordinator, which I founded, to not waver on turning these proposed rules into policy.
David J. Brailer M.D. Ph.D. is the managing partner and chairman at Health Evolution, which is a non-profit that convenes top health-care executives in an annual summit to discuss the biggest issues in health care and also just launched an educational program for rising younger executives. He was appointed national coordinator for Health Information Technology by President George W. Bush in 2004.