The NSA surveillance scandal brings to life that “Big Brother” really could be watching. Technology is a double edged sword – it can be used for good or bad. Do we comb the online and communication footprint of everyone to find the 1% of the sociopathic souls out there planning evil? And what happens if the people combing our private lives happen to be the sociopaths? These are hard questions.
What is of interest to the governments and corporations that track an individual’s technology use? The majority of people in this world do boring, mundane things – call their friends, look at Twitter, get into debate about Justin Bieber, or discuss politics. One common comment is that if a person isn’t doing anything wrong, they don’t have anything to worry about. But would you feel that way if the government or corporations could comb your medical records?
Medicine deals with the many frailties of life. I’ve had upstanding citizens come into the emergency department with odd objects stuck in the wrong orifice, mental health breakdowns over seemingly minor worries, and an occasional blatantly stupid action. I hate telling some guy he has gonorrhea and really needs to tell his wife, and no, he cannot tell her he got it from a toilet. Of course, these patient encounters must be recorded in the patient’s health record.
The Health Information Technology for Economic and Clinical Health Act was passed in 2009 – also known as the HITECH Act. The goal is to promote the meaningful use of electronic health records. Provisions in Obamacare expand the HITECH Act by requiring use of electronic health records or face lower reimbursements from Medicare. In a nutshell, this will move the entire health care system to electronic medical records. Is this good or bad? There is exciting potential, and as we have seen recently, there is a scary side.
Exciting Potential #1: Reduction in health care costs
There is much waste and redundancy in the medical system. One main reason is poor access to tests that have already been performed in other institutions. Patients regularly show up in the emergency department who saw their doctor earlier in the day. Tests were sent to the lab, and the emergency doctor doesn’t have access to those tests so they must be performed again. Having interconnected medical records would stop this waste.
Exciting Potential #2: Better medical decision making
Like any new technology, it will take a while to get electronic health records just right. Right now, most records are hard to navigate and rarely give a sense of what is going on with the patient. Too much of the focus is on billing and checking the boxes so the doctor can prove the records are being used meaningfully. The records of the future will ideally have the patient’s story as the main focus.
The health record of the future will also utilize “clinical decision support systems” which will help doctors make decisions about the next step in diagnosis or treatment. This will assist health care providers in managing the reams of patient data now available. Doctors can do a great job focusing on the history and physical, and the computer can assist them with making the diagnosis and choosing treatments. There is no way a doctor can keep all this information in their head and having “Watson” assist in their patient care process will be a great advance in medicine.
Exciting Potential #3: Patient safety
Patients have all kinds of quirks – allergies, special conditions that warrant specific handling, and multiple medical problems that may require multiple medications. Electronic health records do a better job than paper records to alert health care professionals about these special items. Ideally, this reduces errors and improves patient safety.
Exciting Potential #4: Better coordinated care
When multiple professionals are involved in patient care, confusion is common. The foot doctor has no idea what the gut doctor or the brain doctor is up to, as they all keep separate records in their office. Special letters must be sent when doing a consult, and the letter doesn’t always get back to the referring doctor. Electronic records can improve this situation. A primary care physician should still be involved – they do the best job quarterbacking patient care. The move toward Accountable Care Organizations should also improve this process. A purposeful electronic health record will be the glue to make it all happen effectively.
Exciting Potential #5: Better research
By combing metadata in health records, we can create more powerful studies into the diseases affecting our populations. Trends can be followed and public health resources can be allocated appropriately. Pandemics may be caught earlier and more efficiently contained – I dread the day the novel coronavirus raises it’s ugly crown in the United States. Other uses? With the proper privacy tools in place, more effective research can be performed on orphan illnesses and other less common diseases. Treatment studies can be more easily tracked. The possibilities are endless.
So there is all this good potential use of electronic medical records. What is the downside?
Scary Potential #1: Monitoring by insurance companies or the government
We already know this is currently happening, although more through billing submissions than from actual medical records. Insurance companies and the government will comb metadata from physicians to understand trends in health care delivery on an individual and organizational basis. Physician’s delivery of preventive care will be monitored and reported on healthcare.gov. The payment scale for procedures that are being inappropriately over-utilized will be adjusted by the Medicare Independent Payment Advisory Board. Who knows what else will be done with the data?
Scary Potential #2: Record access by the wrong people
As we see in the NSA case, a young man received high level security clearance and what he learned bothered his conscience as a U.S. citizen. He decided to share that information with the world. His intent is honorable in the eyes of many, and treason in the eyes of others. Sometime people perform malevolent acts without realizing the true extent of the evil. People are also “tricked” into giving up information that could harm others.
With electronic medical records, with the appropriate safeguards, it would be difficult for specific individuals to obtain sensitive health information. Most certainly though, the records could be hacked by anyone – corporations, governments, or individuals wanting to prove a point. I can visualize a list being released from some “funny” hacktivist, “What patients have had a foreign object removed from their anus?”
So what can we do about this?
Technology is powerful and full of possibilities. I’ve long dreamed of one nationalized electronic health record in the U.S., similar to the electronic health record used in France. Instead of a patient and doctor friendly record, we’ve created records totally geared toward billing and litigation prevention, so the promise has taken a side road. Fortunately, groups are working to fulfill the promise of medical records, and the optimist in me knows it will happen.
But what do we do about the potential downside? I don’t know. As a country, and as people, we have to make hard decisions about what is acceptable use of data, and have safeguards in place to protect that use.
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