Electronic Medical Records - Pro or Con?

But, it will also mean the end of your privacy. Everything you say to your doctor and everything your doctor does for you will be accessible to anyone with the keys to the database. Does your soon to be ex-husband, who is battling with you over child custody, have a friend who works in a medical company? He’ll be able to give his lawyer details about why your doctor prescribed an anti-depressant for you that will help make his case that you’re an unfit mother. Your snoopy neighbor, an office assistant at a clinic, will be able to see whether or not you’ve ever been treated for herpes. Sure, those who advocate electronic medical records will say safeguards will be put in place to safeguard against such snooping. But, safeguards haven’t stopped government employees from infringing on privacy by snooping into the State Department’s passport or IRS files. Online medical records will be no different. Congressman Ed Markey (D-Mass.) warns that it will be “a nightmare for consumers” without enforceable safeguards.

President Obama’s plan, according to the New York Times (Page 2, Jan. 18, 2009) has special problems with privacy issues. Obama has added creation of the electronic medical record system as a job-creation measure in his economic stimulus proposal. He is asking Congress to pony up $20 billion to subsidize the conversion. Obama’s goal is to computerize every American’s private medical data by 2014. 

Insurance and drug industry lobbyists are rallying to pass the Obama plan. Their goal is to water down privacy protections when Congress enacts legislation. They will lobby for weak “opt-out” provisions for the sale of patient medical data – a right that will become meaningless if a medical provider makes treatment conditional on a patient opting-in for an office visit or hospital admission. The only meaningful privacy safeguard Congress could enact would be to allow patients to opt-out of being included in industry-searchable databases, with extremely stiff financial penalties and a low burden of proof for plaintiffs whose medical privacy has been compromised.

What does the Obama plan mean for the IBD community? It means that insurers will be able to scrutinize our medical records as never before, to evaluate each of us as a risk, which means, in effect, expect your insurance premiums to rise and for more of us to be denied coverage under a broadening exclusion of pre-existing conditions that database mining can link to IBD. Also, expect your personal physician to be marketed by medical sales people to push more products and services onto you. Be prepared for employers to access your medical records before deciding on promotions, and who to keep on the job and who to lay off. Anticipate that prospective employers will have found a way to review your medical history before a final interview or making a job offer.

Advocates would argue that by linking up the medical records of every IBD patient in the country, practitioners might find the best combination of treatments to help us. Researchers might uncover previously-unknown linkages that would open new avenues for treatment, lifestyle recommendations, or genetic and environmental triggers. Yes, these things may happen, too, if patient records are easily searchable with data-mining software. But don’t be fooled that the potential upside of electronic medical records is all we will get. The downsides are plentiful, and without comprehensive medical reform, the immediate impact will be a loss of personal privacy, higher insurance costs, and increased job discrimination against those with Inflammatory Bowel Disease.