Patients must be given the results of their tests

Just the other day one of the medicine residents presented a case to me, and mentioned that in looking through the patient’s chart he noticed that the patient had undergone a prostate biopsy 1 month prior to this visit, with a follow-up appointment in urology scheduled next month. The result of the biopsy was positive for cancer, but that had not been communicated to the patient. His first instinct, he said, was not to tell the patient, but “just let the urologist do it.”

He said he was addressing a number of other medical issues that day, and did not know that he was going to have to be giving the patient such bad news. He and I discussed several points about this, including the fact that this was his patient, and that he should be giving the patient the best information possible.

What if the patient was secretly wondering if his biopsy was back, and that his doctor must have seen the results, and maybe since he wasn’t saying anything that day it meant good news, and therefore he didn’t need to see the urologist for that follow-up appointment next month?

I have seen several of these “devil’s advocate” situations play out, and sometimes patients don’t show for the follow-up appointment and the results are lost forever in the ether.

How did this situation even arise? How in the modern world of health care today, with all our electronic health record bells and whistles, has someone not communicated these results to the patient 1 month after the pathology report comes back with a serious finding?

Who “owns” this result, who owns this patient, who needs to do the telling?

Much of this responsibility seems to default to us as the primary care providers, but we also need to focus on building a better system, so all our patients will never miss an abnormality that needs follow up.

Our electronic health record contains powerful tools that allow patients to automatically receive their results via secure email. Lab results are released to patients within 48 hours, and radiology and pathology reports are released at 96 hours. Once the patient enrolls.

Having a system of automatic results release has already dramatically decreased the number of phone calls to our practice, allowing us to quickly communicate both normal (and at times even abnormal) results to our patients.

But getting buy in from patients on the use of a patient portal has been variable at best; often they fear having their records travel over the Internet. Even after we tell them that the secure system run by the hospital has apparently never been breached, many patients are hesitant to sign up. And with the recent revelation that the NSA is reading all of our emails, texts, and Facebook postings, I tell them that if someone wanted to know their cholesterol, they probably already do.

Most of our patients have access to email, and the patient portal is even available on smartphones. To be able to reach all of your providers, communicate about all of your health conditions and concerns, is an extremely powerful thing for our patients to have, and a critical component of the patient-centered medical home.

Patients are able to review their records, update their medications, review their health care maintenance to see missing interventions. They can ask questions of the practice (although there are large warnings telling them not to leave messages about urgent health matters like chest pain). In the future, patients will be able to request appointments, and even insert themselves directly into open slots on provider’s schedules.

With the click of a button, the patient can request a refill of all of their medications, and with a click of a button I can reply and e-prescribe to their pharmacy, saving at least five phone calls, and over a half an hour.

Getting back to our patient with the abnormal biopsy results, I have long been a proponent of a closed loop model, where 100% of results are followed up through built in systems. How can we biopsy a prostate or breast lesion, and not know that a plan for follow-up and giving the patient the news, good or bad, is in place?

Putting aside the issues of professionalism and responsibility, in the patient-centered medical home we need to build a system where we stand as advocates at our patient’s side and give them all the tools they need to achieve optimum health.

Using the members and the structures of the patient-centered medical home, we are building a more efficient and confident system of communicating results with patients.

I can’t tell you how many times I’ve asked patients about the results of tests ordered by an outside provider only to hear the much-dreaded answer “well, I guess no news is good news. If something had been bad, someone would’ve called, wouldn’t they?”

Recipe for disaster.

Of course there are myriad problems of language discordance, low health literacy, and socioeconomic challenges that may prevent patients from gaining access to all of these electronic systems and their benefits, but we are actively working on solutions to these as well.

Meanwhile, it’s absolutely critical that we close the loop — patients must be given the results of their tests, and as their primary care physicians, we may well have to be the ones to do it.

Fred N. Pelzman is an associate professor of medicine, New York Presbyterian Hospital and associate director, Weill Cornell Internal Medicine Associates, New York City, NY. He blogs at Building the Patient-Centered Medical Home

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  • Suzi Q 38

    I sometimes request the physician notes after visits with doctors.
    This is no easy task when dealing with a huge teaching hospital.
    I also request a copy of my blood work and other tests.

    I like to read the reports myself. At times, the physician has missed some important findings within those reports.

    I have read about patients whose reports had been sent to the wrong office. The important results of a mammogram sat on this doctors desk for months. The unsuspecting patient thought she was O.K. because no one called her, but she was not.

    Once, my lab results never made it to my doctor’s office. I usually call for a copy, or have the nurse read me the results. She is used to doing this for me. This time, they never arrived, so they had to followup on where my report was.

    It was sent to a different doctor, not even with a similar name.
    That doctor never returned my report, so my doctor never received it.

    We have to follow up on our own reports, if our health is important to us.

    • DoubtfulGuest

      Yes, and 1) I hope docs will wake up the the fact that patients’ requests for copies of records is usually NOT a sign of a broken D/P relationship. 2) Let us help you check for errors, please. Even small, well-intentioned boo-boos in the chart (say, typing menorrhagia instead of dysmenorrhea) add up to big trouble. 3) Docs, if you must make a correction or add a late note, for heaven’s sake please document it properly. We should be able to see what was changed, who made the changes and when.

      • rbthe4th2

        Oh here is where the problems for me started. I found mistakes in one of my doctors’ records. I put in an addition, and oh boy did he give birth to septuplets … I’m thinking … what a maroon … just fix them, or add the stuff.
        The bigger deal was not that he made the mistake, it was how much his EGO, immaturity and lack of responsibility and leadership in handling the matter was. Docs, please take note of that. Some of us have listened and understand things get hectic, etc. Its a record guys. Lets fix it together without a modicum of fuss. When you’re sick, no one wants a peeing contest over an ego. We’ve all made mistakes.
        Besides, the patient might just want to get better and know that down the road, if they have to fix or explain incorrect records, it makes YOUR life, and ALL your fellow physicians’ lives, that much more of a problem.
        Aint nobody got time for that. :)
        Randy
        PS I wrote a 8000+ letter in praise of the new PCP doc, and talked to the office and asked them to make sure the manager saw it. I said I’ve had bad health care before so I’m very delighted with the new PCP and want to make sure they know how appreciative I am of their efforts. I said I know they hear complaints well here are some good things. I started out with a list of 12 items that I praised them for with specific examples where I could.

        • DoubtfulGuest

          LOL, Randy…they are so jumpy about records for risk management reasons. I totally agree with you that fixing the communications on the front end would solve a lot of problems before they start.

          • rbthe4th2

            Risk management is a bunch of whooey. If they acted like human beings that listened, weren’t protecting egos, etc. they would need about 1 lawyer for every 5 they have now. I also suggest that negotiating some “written off” free care to pay for some problems, etc. probably would help a number of us. There is an excellent reason why the way patients are treated is a big difference in whether they’re hit with a lawsuit.

          • DoubtfulGuest

            You are right, and we need to keep making fun of it rather than accept it. What I don’t quite understand, is supposedly some insurance companies encourage and maybe even require doctors to admit mistakes to the patient, and others seem to forbid it entirely.

            I think at times the doctor’s ego plays a role, and sometimes maybe they are even threatened with losing their insurance coverage if they don’t keep quiet? I’m not sure, and there are probably a whole bunch of scenarios in between those two extremes. I have no idea how to fix this ridiculous inefficient corrupt system. My take is that one thing we patients can do is start calling out these problems, and do that without running to a lawyer.

            Your very colorful description above is hilarious, btw. Almost spit coffee all over my computer.

    • Adolfo E. Teran

      Dear Suzi, I agree with your comments about the need for the patients to have copies of their labs.
      I send copies of my patients labs to their patient’s portal after I discuss and explain the reports to the patients.
      The patient can view them at the portal and print if they want to. Also every time that I see a patient , they receive a copy of their health summary with my plan of care at their portal. I think it’s really important to be transparent with your patient, I love to have a well informed patient. Also via portal the patient has access to their medication list.

      • Suzi Q 38

        I think it is great that you have portals for your patient’s records and tests.
        That is so progressive and “open.”
        I only see benefits to offering this.

        For all of Kaiser’s faults (the negative things I hear about the organization), they have portals for their patient.
        The secretary at my school asked me to help her interpret hers. I told her that her numbers were far better than mine, and that she needed her doctor to explain the results to her. I was impressed at how easy it was for her to get her results in a timely manner.

        “Transparency” can only help patients help themselves, as they know where they stand and how they need to improve their diet, etc.

        I recently had knee surgery, and the orthopedic surgeon handed me a DVD of my surgery. I thought that was very “transparent,” LOL. I thought it showed demonstrated confidence of his surgery skills.

        He wanted me to show it to my physical therapist.
        I watched it myself, and it meant little to me..like a vacuum cleaner hose sucking up cotton…but I appreciated the gesture.

        None of my doctors have a portal that I know of, and so you are doing well to provide this for your patients.

        • Adolfo E. Teran

          I pay for the patient portal a lot of money and I offer it free to my patients. I have to pay to my emr and hosting company for it.

        • SarahJ89

          A portal that is very difficult to use, however, is a portal in name only.

          • Suzi Q 38

            True, but I have not seen one that is difficult to use. Yes, that would be frustrating.

            I still would welcome and be appreciative of any type of portal that would allow me access to my own records without signing a release form for each and waiting a month for the information.

      • Sherene

        This is fantastic.

  • Frank Lehman

    If the primary care provider orders the tests, the primary care provided has the obligation to provide the results to the patient.

    Is that so hard to understand?

  • SarahJ89

    I find it more difficult than ever to be assured I get test results. My diagnosis of hypothyroidism was delayed by six months and might never have come to light had I not thought to ask “What about that blood test last January?” on my way out the door. No one had called to let me know!

    The “nonprofit” hospital that owns (and sucks dry) all the PCP offices in our area has covered their butt by setting up an electronic patient portal. I spend a lot of time on line but have found it impossible to use effectively. It’s clearly designed to appease the bureaucrats and not at all for patients.

  • Sherene

    What a cop out for the resident to not tell the patient. If he knows the result, he should tell him gently, and then explain the importance of following up with the oncologist.

  • DeepBreath

    There are at least two assumptions that were made in this situation. First, that because the follow up appointment was still a month away, that the physician didn’t communicate the results of the biopsy to the patient. Second, that the biopsy warranted immediate treatment. A low Gleason Score indicating an indolent prostate cancer in an older man needs no treatment.

    Why not just ask the patient about the biopsy, and listen to what he says?

  • DoubtfulGuest

    Patients, too! :)

  • DoubtfulGuest

    I know one concern of Drs. is that e-mail adds uncompensated work and their days are already so long. One of my doctors allows e-mails…getting a response is another matter, but he tries.

  • guest

    “In the future, patients will be able to request appointments, and even insert themselves directly into open slots on provider’s schedules.”
    Actually this already exists. There’s a website called Zocdoc.com which I have used to schedule appointments. I love it.

  • T H

    The practitioner who orders the test is responsible for the test. I see dozens of people a week who are waiting on results of a blood/pathology/radiologic study. If is is directly germane to why I am seeing them in the ED, then I will pass along the results (and, often, act on them).

    That being said, I am not their primary care doc and I am not their surgeon. If I go blundering into some other physician’s relationship with their patient, I could be doing irreparable harm to the trust there. What’s more, sometimes the results – AND MORE IMPORTANTLY, WHAT TO DO ABOUT THEM – goes far beyond my scope of practice. How will I intelligently talk about primary amenorrhea and what the results of the chromosomal studies actually mean? How about some of the newer genetics testing? Functional MRI testing for a desperate mother with an autistic child? Frankly, I can’t. And saying “Sorry, I gave you this news, and while I know what it means in the general sense, you’ll have to wait another 2-3 weeks to speak with (insert ordering physician’s name here)” is not fair to them, to the other physician, or to me.

    The flip side is that if a provider is going to order a test, they are responsible for delivery of the good/bad/indifferent news and to plan (along the the patient) what to do with the information. There are three reasons that physicians like to have these discussions face to face:
    1. minimize misunderstandings.
    2. engage the patient in the future treatment plans.
    3. answer questions.

    I’d say 4. Bill for the enounter, but this isn’t always true. Surgical followups are included in the umbrella period.

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