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Support the Proposed Federal Rule to Expand the Rights of Patients to Access Their Test Results

A 2009 law modernized patient access rights by allowing individuals to get copies of their medical records in electronic format. Unfortunately, however, these patients’ access rights surprisingly do not include lab test results – one of the types of medical records that people are most likely to find urgent and useful. Due to the interaction of HIPAA (the Federal medical privacy law), CLIA (a Federal laboratory regulatory law), and state laws, patients can only get direct access to their their test results from labs in a handful of states.

In 2011, the Department of Health and Human Services put forward a proposed Rule that would give patients the right to get their test results directly from laboratories. This Rule is still waiting to be finalized. In hopes of breaking the logjam, O’Reilly Media and a variety of other players have written a consensus letter that voices our whole-hearted support for that proposed Rule and encourages the Federal government to finalize it promptly.

You can sign the letter below.
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Jelle Boomstra's profile photoKatya Kean's profile photoSteve Paredes's profile photoLeszek Dziędziewicki's profile photo
7 comments
 
We pay outrageously high prices for lab results, which have skyrocketed in the last 20 years. You'd think it wouldn't be asking too much to see the actual results, especially as part of a medical record request, but welcome to America where you have to pay the most and then fight for what you've paid for. Ugh.

( For those interested, I recently posted about how the healthcare costs have ballooned since 1980 here: https://plus.google.com/u/1/101948892741439413430/posts/X1E2aHRazfS )
 
I thought WellnessFX already essentially does this.  I can access all of my specific lab result numbers, visualized & graphed to show changes over time, on their website.  The doctor notes and recommendations are included online, and the "Visit" is over the phone.  
Also the labs are way less expensive and more comprehensive than you get through a typical doctor's office.
But it would be cool, though, if WellnessFX could just release my labs into my account without their being forced to involve a doctor every time.  I mean, I really don't need a medical professional to explain my change in hemoglobin, when that info is on the internet.  
I hope this goes through.
 
from a physician's point of view, this will lead to disaster. The average patient has trouble understanding their lab results when I'm there to explain them, imagine a layperson making medical decisions by googling their lab values. We train for many years to make intricate interpretations based on these values, patients have no idea what these mean. Do most of you know what the sensitivity, specificity, and positive/negative predictive values of most laboratory tests are? I didn't think so. By the way, if you release HIV test results without physician counseling, I'm gonna expect to see more attempted suicides coming into my ER.
 
+Steve Paredes That is quite an arrogant and old fashioned attitude. The problem is not in the lack of knowledge, because the last ten years a lot of knowledge has been and continues to be shared, but that does not lead to the chaos you describe. Specialists will still be specialist and know a lot better how to interpret data, no matter what the field. But that should not give them any right to monopolise access to data. How happy would you be if you could not get the results for say concrete testing that you ordered, but only a consultation by an architect that has glanced at your results.
Guidance, yes but paternalism is not what a doctor should offer.
 
my perspective is based on years of seeing patients do the wrong thing. I have had not only patients, but family members, get seriously ill or die because they did not listen to expert opinion. Some doctors think, hey it's not my funeral. Some doctors actually got into this because they care about their patients health. It's not paternalism, it's compassion.
 
Perhaps the solution doesn't have to be so extreme and either/or.  No need to throw out the baby with the bathwater.

If it is a test of disease, such as HIV or cancer, there is justification for having a doctor present to explain things during the release and make recommendations for care.  There is a definite safety risk involved.

But what about routine maintenance checks?  For instance, if I get a CBC plus Ferritin test every 2 or 3 months (My Ferritin was 6 at last count, so- Yikes), then I really don't need a doctor to explain it all to me with EVERY test update, any more than a doctor would need to release my weight or height numbers to me.  I can handle seeing that brand of results directly.  
In fact, taking this a step further, it irritates me that I even have to ask a doctor to order those simple kinds of tests for me.  If I can be in charge of checking oil levels in my car, then I can be in charge of deciding when to check my Iron count.  I'm that grown-up.  I should be able to order myself a CBC, blood-glucose, lipid panel, and a few other things.  Calling my doc to order those tests is a waste of time for them, and if they insist on a Visit before ordering one, it's a waste of money for me.

So maybe the new law should differentiate classes of test results, with the general principle that the most benign tests can be directly released, and maybe even self-ordered.

The biggest problem in American Healthcare is lack of preventative medicine.  If access barriers to benign maintenance blood tests were lowered, and test cost and availability improved because of lowered regulation, people might test more and aim for optimized wellness-care instead of just sick-care.
Besides, if someone's white blood cell count spikes or drops drastically, they will most likely call a doctor right away.  Or, an auto-alert could be set up with labs to auto-email one's designated doctor in case of suspicious results for those routine maintenance tests.
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