Every Patient's Advocate

Your Health Information – But Not Your Right to See?

Please note the launch of this blog post — Monday, June 22, 2009 at 9 PM Eastern time… this blog post is part of an effort being launched across the country to make it very clear to decision and policy makers that American patients expect full access rights to their entire health records.

Why?

Because even though the laws are supposed to protect those rights, we find that we are in the midst of arguments about whether that will truly happen with the advent of electronic medical records.

Here’s how and why:

One of the major and important steps in rebuilding the American health system through reform is the creation of an electronic system that will allow the sharing of information from patient to doctor, from doctor to doctor, from facility to doctor and back — but if many of the professionals have their way, patients will have access to only some parts of their records, and not all of their records.

The conversations taking place show us that among the doctors, healthcare facilities and others involved in the design of these electronic records, many are lobbying to restrict our access to parts of our records.  The parts they don’t want us to see may be billing related, or they may be related to notes the doctor or provider has included in our records.

Why would they want to restrict some access?  Because they don’t want us to know what they are saying about us.  They may have made a notation that says you are a difficult patient, or a non-compliant patient.  Or they may have noted that you should be watched for potential heart disease or diabetes or some other potential problem.  That’s, at least, what they tell us publicly.

My sense is a little different, and its based on the experience of e-Patient Dave, my friend Dave DeBronkart, who was able to download his records from the hospital where he received care for his kidney cancer and discovered all kinds of problems with those records.  He learned he had been diagnosed with diseases no one ever told him he had.  He learned he had gotten tests that he knows he never received.  It goes on from there.

So what’s the problem?  First — his insurer got BILLED for those extra tests and diagnoses he never really got.  Now multiply that times the millions of Americans who might find out that’s in their records, too.  Second — now multiply that by the problems that might have occurred had Dave tried to get health insurance somewhere besides through his employer.  Because a new insurer would pull up his error-ridden records, he would have been turned down flat.  And third — because if Dave tried to go to a new doctor who pulled up those electronic records and saw that Dave “had” all the things he didn’t really “have” — then he might misdiagnose and mis-treat Dave later, too.

It’s important we all have access — and gain access — to our entire health and medical records, check them for accuracy, and correct any problems we may find.

It’s important to our lives — and to our wallets.  Learn more about the initiative to make sure patients maintain the rights to their records in their entirety.

From HealthDataRights.org, the Declaration of Health Data Rights:

In an era when technology is allowing personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:

• Have the right to their own health data
• Have the right to know the source of each health data element
• Have the right to take possession of a complete copy of our individual
health data, without delay, at minimal or no cost; If data exist in
computable form, they must be made available in that form
• Have the right to share our health data with others as we see fit

Learn more about:

• Electronic Medical Records
• Getting Copies of Your Medical Records
• Correcting Your Medical Records
• The Medical Information Bureau

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