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Posted on 20. October 2011

Giving Patients Direct Access to Test Results: Is It a Good Idea?

by Kris McFalls

The U.S. Department of Health and Human Services (HHS) has proposed a change in federal regulations that would allow patients access to their laboratory test results without first going through the ordering physician. The proposed change is due to the fact that physicians fail to notify patients of abnormal test results about 7 percent of the time. There is both opposition and support for this change by physicians and other organizations.

I have always advocated that patients should acquire and keep copies of their lab work after their doctor has reviewed it. And I have never believed that patients should try to interpret lab results on their own. In fact, I would encourage patients who already have direct access to copies of lab work to make an appointment with their physician to jointly review the test results. However, a recent personal experienced has led me to believe that the HHS proposal may be a positive step for some patients.

A while back, one of my regular doctors moved. She was religious about mailing me copies of my lab work along with a note with instructions for follow-up. If something unusual showed up, she or one of her nurses also would call. When this doctor moved, I was forced to find another physician. Unfortunately, although a good physician, the new doctor did not have the same policy about sharing my lab work with me. What’s worse, unless I brought the subject up, I never heard anything at all about my blood work. Therefore, I signed the necessary releases to have the lab directly fax me a copy of the results.

Recently, that practice proved pivotal when I had my routine annual blood work. Like many patients with chronic illness, I keep copies of all of my lab work, and I know what is normal for me and what is not. This time, I noticed there was a significant change in one of my thyroid levels. Because the current thyroid level was still considered at the high end of normal by the lab technicians, it was not flagged as a potential problem. But, by comparing these lab results with past results, I was able to spot an upward trend that otherwise may have gone unnoticed for another year. As a result, I was able to make an appointment with my endocrinologist, who after an exam and a conversation about my symptoms, decided it was best for me to start thyroid replacement therapy before my thyroid disease further progressed.

Currently, it is not common for patients to gain direct access to their lab results, but some states and certain healthcare organizations do allow it. Additionally, some healthcare organizations make all medical records available electronically - even office notes. As a safety precaution, however, those same facilities delay the release of those results by a few days to give doctors time to review them before the patients have access. The HHS proposal does not have a specified waiting period.

Opponents of the HHS proposal fear that giving patients direct and immediate access to life-altering test results may increase patient anxiety, poorly influence the doctor-patient relationship and cause significant disruptions to the medical practice. Additionally, these opponents point out that some test results are devastating and should only be relayed to the patient by someone ready to counsel that patient and their family members.

Proponents, on the other hand, such as Quest Diagnostics, feel that giving patients access to lab results recognizes patients’ rights to their health data. Jon Cohen, MD, chief medical director at Quest, stated: “If you have your blood drawn, who owns that result? We believe it’s you, the patient. It’s your blood, your data, your results.”
Whether you are for or against the new proposal, you have the opportunity to express your wishes before a final ruling is made. The proposal can be read and comments can be made at www.regulations.gov/#!documentDetail;D=CMS-2011-0145-0001. Comments must be submitted no later than November 14, 2011.

Tell us what you think. Should patients have direct access to lab results?

 

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Comments (13) -

Susan pentlin
9:19 PM on Thursday, October 20, 2011

Absolutely.  THe physician of course has the right to counsel the patient to wait until medical review to make any conclusions about the test results, but keeping this screen of secrecy between doctor and patient may help maintain the doctor's "god complex," but it does not further a healthy relationship at all.

Pain In Maine Health
3:10 AM on Friday, October 21, 2011

Finally, there is consumer-driven health, in which systems, consumers, and patients have more control of how they access care.This is  to provide a greater incentive to find cost-saving health care approaches. Critics of consumer-driven health say that it would benefit the healthy but be insufficient for the chronically sick.

SueF
6:23 AM on Friday, October 21, 2011

In Canada it is legal for a patient to review any and all entries into their chart.  Unfortunatley, when a patient needs any lab results or consultations, we must first make an appointment with health records, and a patient is allowed up to an hour to look at them and get photocopies.  If it takes longer than the time set out by the hospital, a patient is charged between 50 and 100.00 per hour.  As well, the hospital charges a large fee for photocopying.  The one and only time I had to access my records the photocopying charges were $100.00!

As well patients in Canada may see their health record while in hospital.  In my experience, the staff will now allow a patient to view the records.  This is frustratig, as having a chronic illness requires frequent bloodwork and other diagnostic tests.

Most physician's policies will not call if test results are normal.  While viewing my record, I found many abnormal lab results that I was never told about.

I think that this law in the US is a positive step.  Patients with chronic illness have to be their own advocate and if they spot an abnormal result, it can be addressed at the next physician visit.
In my view improves patient outcomes.

Ellen
4:13 PM on Friday, October 21, 2011

I absolutely agree! It is such a nuisance to have to go through the doctor's office to get the results. Nevada is a "Right to Know" state, where patients have direct access to results. This would eliminate one step, which would also help the doctor's offices immensely. Patients are being encouraged to take more responsibility for their health, so receiving results seems logical and responsible. Interpretation can still come from the physician, but often that is also an access challenge.

Joanne Pease
5:01 PM on Friday, October 21, 2011

It is my information! Why would I not want it.  I am my best advocate and my family's best support.  I need all that statistics that are available in order to do my best to accomplish whatever task I am working on at the time.

Ellen
7:37 PM on Friday, October 21, 2011

I totally agree that us the patients should have access to the results of tests that doctors order.  I only have one physician out of many that will call me with test results as soon as he gets them otherwise I feel like I need to chase my doctors down for results and it is a nusiance and I feel I should not have too.  It is my right to know the results to my tests.  The doctors order a lot of specialty tests and if they were so important to have I feel like I have a right to know the results asap.

Glinda Adkins
1:54 PM on Saturday, October 22, 2011

I agree totally that a patient should have the right to the reults of the test.  I have a huge binder that I have with me at all times and it has become VERY helpful to have all current information in it.  When you have a team of doctors, the information doesnt always get to the right person.  With certain blood levels, such as thyroid test,  the information allows the DR's that treat you to know what "current" information.  I also find as a patient you have to be in control of your own treatment.  To carry current information when you travel has been very beneficial to me as well.  When you have chronic illenss, often the full picture needs to be presented.  

Shauna
2:56 PM on Sunday, October 23, 2011

As someone who thankfully has not had great need to interface regularly with the medical community, I would love to get my results but would definitely need the physician's input to even know what a "normal" level was for some of these tests.  I appreciated the warning in the article to review results with the doctor and work together to arrive at a treatment plan.  Increased information would help me to be a more knowledgable patient.  Always a good thing!

Jeanette
1:03 PM on Monday, October 24, 2011

It should be the right of the patient to gain access to lab results, it is their blood or body being teted. With todays insurance issues/costs, another appointment to discuss most results is not called for--a phone call is appropriate. This also pushes patients to be more resposible with results and rightly so, I think this is a good thing. When patients understand more they can be a partner in care instead of just being told what to do.  

Marilyn
11:23 AM on Wednesday, October 26, 2011

Absolutely, the patient should have the right to this info -- no questions asked. I recently saw a specialist because I was ill. He took blood work and cultures. Six weeks later, much sicker, my PCP ordered CT scans and other diagnostic work to find the problem. THEN, we found that the  original specialist KNEW all along, that I had a UTI, and hadn't shared this information. This was horrible, and cost me 6 weeks of my life, of unnecessary illness.

Pamela
6:18 PM on Friday, October 28, 2011

I absolutely support this idea. I would have enough common sense to contact my Dr to make an appt to discuss blood test results, if they were too abnormal.
I think anyone should be allowed access to those kind of records. I hope it passes.

Maggie Bernet
7:12 AM on Friday, December 16, 2011

Absolutely, we have the right to know as it is our body our test results, it is part of our medical history which we should have at all times.
Here in Canada, we do have access to the usual blood tests we want via ehealth.ca, however, any special tests that have done at a hospital lab or have to be sent in to different speciality labs, we have no access to them, but any of my doctors will give me a copy as soon as they get the results.
I have been collecting my results for many many years, as I always insisted having them so I could keep on eye on things myself, maybe that has to do with my profession, I am a Lab Tech and nurse by trade. I recommend to any patient to get and keep their test results, results of any kind, you have a right to a copy as it is part of your history.
You never know when they come in handy.
Every patient should be their own advocate if they possibly can or have a family member etc. look out for them. You are the "Patient", one person, the doctors have thousands of patients, and you know what that means, you are just one in many.

"Be Your Own Health Advocate
Change from passive patient to an active advocate for your own health care.
By Martin F. Downs
Without doubt, communication is crucial to good health care. When people take an active role in their care, research shows they fare better -- in satisfaction and in how well treatments work. A passive patient is less likely to get well."

Linda Thornrose
2:43 PM on Friday, September 27, 2013

I cannot find the final status of this rule.  Was it passed?  Does anyone know?

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