Can you handle being the first to know your own test results?

There’s a push-pull happening right now in the evolution of health care and it’s all about you. The question under debate is simple: can you handle being the first to know your own test results?

Are you smart enough to read the results? And are you emotionally capable of handling the situation?

Do you need someone next to you when an over-the-counter test tells you whether or not you have a disease? Can you manage your emotions when you open up the results of last week’s blood test when you find out your total cholesterol level has hit 250?

A U.S. Food and Drug Administration advisory panel has voted to recommend approval of the first in-home HIV test. The test, OraQuick, only involves using a larger version of a Q-tip to swab outer gums. Twenty minutes later, you find out if your immune system is gearing up to fight HIV. The decision is now up to the FDA.

Those arguing against allowing people to take the test at home are worried that they will freak out when they get their results. They say we need a professional at our side to interpret the results, point us to counseling and help ensure we feel supported.

With almost every healthcare test we get, there’s a wall that instantly goes up between us and our data. If you have a mammogram or a Pap smear, your doctor will typically get the results before you do. If you get an ultrasound, you’ll most likely be the last one to know whether it’s normal or not.

It’s not because you have to be a physician to understand the basics. At the top of most test reports the key finding is clear: “Normal.” Or “abnormal.” Then you can read on for more details. Home tests, like pregnancy tests and the new HIV test, usually turn a certain color to tell you the results.

With blood tests, there are usually two columns: your results, and “normal limits.” If your data is out of bounds, it’s often automatically highlighted. If you don’t know what the test means, you can Google it. Then you can go see your doctor and talk about next steps.

Some laboratories will send you your test results at the same time they send the results to your physician. Some won’t.

The labs and diagnostic centers that will not send you a copy at the same time say that it’s your physician’s job to review and explain the results to you. And some states actually prohibit it.

Your healthcare provider may have been the one to order the test but you’re the one paying for it. Even if you have health insurance and there is no direct cost to you for the test, it’s your insurance that covers the cost. The data is yours.

Granted, many people may not be interested in being the first ones to see their healthcare data and have some time to consider their questions before talking with their physicians. That’s fine, as long as it’s their choice.

But those who consider themselves the “CEOs of your own bodies” should have the option. You should be able to review your lab work or test results as soon as they are available.

What can you do?

Some labs offer to email you your test results or make them available directly to you, even on your smartphone. You can phone labs and ask them their policy about communicating test results before you get your blood drawn or have a diagnostic test.

You can ask your healthcare provider to specify on the lab order that the results be sent directly to both you and your doctor.

Instead of waiting for a phone call from the doctor with your test results, you can tell the office staff you’d like an appointment. Tell your healthcare provider something like, “My total cholesterol has gone up. I’d like to talk with you about it.”

Be sure to routinely file the test results in your own “Health Data” folder for future reference.

Barbara Bronson Gray is a nurse who blogs at BodBoss.

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  • Peter Elias

    As a (primary care) provider, I think my patients should ALWAYS have this option, for lab tests, radiologic results, consult notes, office visit notes. 

    As a patient and spouse of a patient, I (and my wife) want easy and immediate access to our data about our health.

    If I asked a contractor to renovate my kitchen and replace the appliances and all they would show me was their total estimate, and not let me see the price list for the appliances, parts, labor…I’d show them the door. I would assume they had something to hide.

    What I find amazing is that we are even in a position of having to discuss this.

    • NewMexicoRam

      I’d encourage you to read Margalit’s response above.  There’s more to this than meets the eye.

    • Ryan David

       There is an ongoing debate in the radiology community on this exact issue as well. It got contentious at this year’s ACR meeting as a resolution was put forward to recommend not only making patient’s reports available through an online portal (already a law) but directly mailing patients a copy of the report.  It was a heated discussion. Many of those supporting the resolution were mammographers who already are required by federal law to mail the patient their report directly. The difference there is that the mammo report mailed out is standardized in lay person’s language. Many felt (including myself) that mailing a copy of the report for a CT of the body (for example) is another thing entirely. It would be very difficult to create a lay language report for many studies.  Even if normal how do you explain incidentals and likely benign findings? 

      • bbgrayrn

        What would you say to a financial advisor who told you he or she would only send you a lay summary, say something like “your financial status is normal”?

  • Dike Drummond MD

    Great question … and nothing is black and white. The best answer is almost certainly “MAYBE” and it depends to a great degree on what you choose the word “HANDLE” to mean.
    Understand the diagnosis – maybe
    Understand the implications of the result – maybe
    Be able to deal effectively with your emotional reaction to the results – maybe
    Will there still be a role for the physician supplying the missing information, prognostic interpretation and emotional support – CERTAINLY

    In the age of internet information sources on healthcare that are a confusing mix of fact and urban legend … it is so important that giving the patient the choice to get their test results immediately and directly NOT be an actual abandonment of them to figure out what it all means on their own.

    My two cents,

    Dike Drummond MD

  • DavidHarlow

    Lab results were specifically excluded from the original HIPAA rules granting patient access.  Some state laws permit direct patient access, some don’t.  However, proposed Federal regs wending their way through the process would grant patient access to lab test results.  

    See: Lab Results for All! Of Data Liberation, Participatory Medicine, and Government 2.0 | – 

    and: Society for Participatory Medicine Files Comments in Support of Proposed CLIA and HIPAA Regs Making Lab Results Available to Patients | –

    As far as immediate access goes, the Society for Participatory Medicine has taken up the shared decisionmaking “battle cry” of “Nothing About Me Without Me.”  If anyone other than the person entering data in an EHR has access to it, the patient should have access to it as well.  See our comments regarding the proposed Meaningful Use Stage 2 regs here: 

    SPM’s responses to the proposed rules for Meaningful Use Stage 2 | –

    For clinicians and non-clinicians who support the ideals of participatory medicine and shared decisionmaking, I invite you to join the conversation at –

  • Margalit Gur-Arie

    David, I do agree that people should have full access to their results as soon as they are resulted. But I do have a liability question for you.
    If a patient commits suicide after receiving some horrible confirmation to a horrendous disease (or thinks he did), is there any liability for the physician whose EHR portal was used to view the unsigned results? Can they sue for negligence, particularly if say, the doc was aware that the patient was depressed?

    • southerndoc1

      You think like a doctor!

      • Margalit Gur-Arie

         Thank you, I presume…. :-)

        • karen3

          And why would a meeting, done in 1.4 minutes, with a doctor rushed to see the next patient, delivered with the compassion of an ice cube, change the outcome

          • Margalit Gur-Arie

             …in which case I assume you will be happy to sign a document releasing your ice cube doctor from any legal responsibility for your consumer-driven care. Right?

  • ninguem

    There’s a number of national laboratories that allow patient direct access to labs, and in fact allow the patient to order the labs in the first place.

    Main problem at my end is they ask me……after the fact……to fight with their insurance company to get the test covered. Patients can order their own tests, but they pay for it themselves. If they want insurance to cover it, they have to have a physician order. The usual scenario is the naturopath they see, ordering some massive battery of unnecessary tests for quack treatments, and they want me to retroactively order it in my name, so they get the test covered, and I get the hit in the insurance database for excessive laboratory orders.

    Other scenario is I get blindsided with lab results for tests I didn’t order in the first place, and now they want me to explain the rationale…..for tests I didn’t order…….and come up with an explanation for any deviation from statistical normal, no matter how tiny and trivial the deviation.

    And do it over the phone, no less, for free………and usually on a patient I haven’t seen for a couple years.

  • karen3

    I kept myself together just fine when my brain MRI showed something like a bright white golfball in the middle of my head.  The tech didn’t. And it turned out not to be a big deal.  What I hate is getting sandbagged with bad news and then the doctor runs out of the room and I get no chance to ask questions in any intelligible manner.  And getting the bad news directly sure as heck is better than a doctor sitting on the results and not telling me that I have lung cancer and they knew  it — for a month — which happened to a family member (now dead due to said cancer).  

  • Emily Gibson

    As a physician with an EMR that allows patient access to their chart on line, I have not struggled with whether but when to allow our patients to see their lab and xray reports.  There are many abnormalities that are not significant at all, or not significant in the context of the patient’s symptoms, or normal results that may be very significant.  This is what I was trained to do: interpret results for that patient with those symptoms at that moment of time.  Patients can google all they want and not find that kind of professional interpretation.

    So our clinic has committed to the patient that we will send all their results to them electronically, with interpretation, the same day (usually within an hour) we receive them even if an evening,  on a weekend or a holiday.  They are not allowed electronic access before a provider sees and reviews the results as the amount of potential anxiety and concern over “insignificant” abnormalities takes too much time to undo.

    It means an additional after hours commitment on the part of the provider to make this possible, but it is a win-win for the patient to have not only the results but an interpretation from the health care provider who understands their particular history and set of symptoms.

    So far, I have heard no complaints from anyone and I think it is a refreshing way to treat the patient as a partner in their own care without forcing them to obtain their own M.D. degree by Google correspondence course. 

    • bbgrayrn

      I would just ask you if you could ask patients what they would like? Those who want their lab data concurrently with your receipt of the data should get it. How would you like it if your stock broker insisted that he or she needed to see the information before you did, to “explain” it to you and “prepare” you? Some might like that option. Most wouldn’t.

      Wanting to get data concurrently with the physician receiving it doesn’t mean patients want to act like doctors, as you suggest. They just want to have the information. It’s their data and their bodies, after all.

      • Emily Gibson

        Actually most commercial labs are giving patients the option to receive their own copies of labs either over the phone with a PIN number or by mail. Perhaps some allow electronic access but that is not available in our area yet. If patients prefer to receive their results without benefit of professional interpretation, that is certainly their option.

        I think my solution is the optimum for the patient as it gives the patient truly timely access to all lab results with the addition of professional interpretation at no extra charge. I am not like a stockbroker playing the options and my patients’ well being is not like their portfolio. I have the training and the clinical experience, and the knowledge of the patient’s clinical presentation to make sense of numbers that can be highly individualized and the lab’s “normal range” may not be relevant for a particular patient–they are just standardized guidelines. Some of us are not normally “normal” or the lab “normal” may not be our normal.

        With your approach, we might as well make all tests on demand and over the counter like HIV, pregnancy, lipids and let a brochure, website or non-clinician over the phone interpret the results for the patient who happens to want complete autonomy in their health care. Why bother visiting a physician at all? Even as a clinician myself, I want my physician to have thought about my lab results and give me his impression and opinion. I don’t trust myself to be entirely objective about the results.

        Just my professional and personal opinion, for what it is worth.

  • Sablier925

    As a heart patient who had just had two catheritizations back to back for a complicated set of stents, I was not feeling well and went to see my Internist as I could not get in to see my Cardiologist. I was having pain in the lower and upper abdominal quadrant suggesting a possible bleed.  Because of my bleeding history, he immediately sent me for labs and to get an emergency CT scan. The radiologist was instructed to hold me there to give me the results. Instead, while waiting, the phone rang in the waiting room.  The radiologist, apparently concerned about the news, called the after hours physician – who did not know me – to convey that he thought I had large ‘masses’ that would need to be biopsied right away. The next day, I saw my cardiologist with my labs in hand and the strange information from the CT.  All my lab values were down considerably.  In totality, the information suggested I was bleeding internally, which I shared with my doctor.  He said we should go ahead with the biopsy as a precaution anyway (I should point out he was not the interventional specialist this time).  Fortunately, the radiologist scheduled to do the guided needle biopsy called my doctor and told him that in reading my films, it was clear this was a massive amount of retroperitoneal bleeding and he was canceling the procedure. While I appreciate being cautious with interpreted results, sometimes time and circumstances need to prevail.  I cannot say much about the radiologist who could not tell the difference between ‘masses’ and blood, but being an educated patient helps me more more than harms me.  

  • Peggy Zuckerman

    As a patient who receives 2-3 CT annually to watch for the return of my cancer, I am the best and most interested reader of my scan reports, which I pick up in person within 24 hours of the scan.  Often I have had to give up a second copy to my oncologist a week later at our appointment, when he cannot find/has not received my CT scan.  That does not bother me as much as the realization that he would not have really had time to STUDY my scan report in advance of my appointment.  His quick glance, my careful reading and re-reading… a good combination only because it gives me time to prepare my questions and be a more involved and responsible patient.  BTW, I am also a member of the Society for Participatory Medicine, and want to have instant and first access to my tests.  

  • Marty Tousley

    Thank you for this. As a conscientious individual who works to stay as healthy as I can, it just infuriates me when I must work so hard to obtain copies of my diagnostic test results. After all, I am the one who is responsible enough to be showing up and paying for the test in the first place, and if I’m asking for the results, they should be given to me without question. This is my body. As someone wrote in an earlier article I read on this same topic, “Give Us Our Damn Data!”

  • Natalie A. Sera

    I want the results, simply because I can then be prepared to talk to the doc about them, rather than having to make ANOTHER expensive appt. after he has broken the news and I have gone home to research what they really mean. The doc doesn’t have time to tell me what I need to know. Just for example, I just got a lab test with a slightly high BUN/creatinine ratio, and found out that the most likely cause is dehydration and age. Both of which could very well apply to me, and it’s not so hard to make sure I drink more fluids. In addition, I had a low serum amylase, BUT there was nothing else out of whack, and I know that sometimes lab tests can show screwy results. So, while I would expect my doc to notice it, and do more testing if necessary, I’m NOT going to blow my gasket over it. If he doesn’t mention it, I will, but I rather expect the screwy lab test explanation, and to wait and see what happens next time. And if not, then we’ll figure it out. My point being, I’m NOT an idiot, and I don’t expect to be treated like one!

  • Coco Lossil

    1. I pay for them – they’re my property.
    2. The idea of a specialist or GP having oodles of time to “comfort” a distressed patient does not correspond with any experienced I have had in nearly 60 yrs. They are too busy, patients are backed up and frankly, they are medicos not trained psychologists. Most are very bad at comforting anyway – some remind me of Sheldon Cooper from Big BangTheory.
    3. I need the results as a patient so I maximise the time I spend with my Dr. By getting my results early,I research every term, every abnormality, read up on options, pros and cons, learn the terms. So by the time I get to my $350 specialist appointment for my 15 minutes, I have read absorbed, sorted out terms/options, have my list of questions most pertinent to me – so instead of the Dr wasting the appointment on basic anatomical drawings or answering kindergarten level questions, we hone in on the real. meaty stuff. You know – the bit that makes me think his hourly rate is good value.
    4. If I am upset and cry, I can do it on my own. Minus an audience whose hourly rate spent comforting me crying is a waste of everyones time and money!

  • bbgrayrn

    Thank you for those excellent resources. Will follow up on them. I’m definitely on the same page.

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