Results, when do patients want to know?

Recently, a medical oncologist posted on Twitter about how a patient finding out their scan/testing results through their portal was a bad experience for the patient. This doctor, as many do, opined that a patient getting a result outside the doctor’s office created too much anxiety and concern. As I expected, responses to this tweet were many and varied and from many different perspectives.

But it got me thinking, as many of these discussions do.

My initial reaction was a little consternation as I am always concerned when the medical establishment (for whatever reason) desires to insert measures of control on the flow of information. To me, as a relatively experienced patient, any delay in learning the results of a test or bloodwork only creates more anxiety. I do, however, recall those blissful days not too long ago when tests were routine and didn’t cause such concern. And I vividly remember appointments where big news was discussed.

Let’s travel back in time before the CURES Act of 2016 when providers could potentially control the flow of information to patients for a variety of reasons. That legislation started the cascade of updates to different regulations that cover protected health information (PHI) and electronic health information (EHI), which often left providers and patients struggling to figure out what to do. Here’s a great chart explaining some of those implications.

So, we’re back in time before 2016 and a test is ordered. The results of that test are provided to the doctor and then an appointment is held where the results are provided verbally and sometimes physically to the patient. If this happens within days, everyone is informed and walks away with information they need and next steps are outlined and perhaps even scheduled right then. Patient portals were around but not as ubiquitously utilized.

What’s wrong with this picture?

Generally, I think nothing is really wrong here. Both patient and provider’s needs are generally met and for most tests, this system was sufficient, especially when such testing was conducted annually and generally only tweaks were needed. Certainly while I was pregnant and different levels or results were monitored more closely, there were more visits and longer conversations; because of that, the system or protocols took this reality into consideration.

But what about patients getting closer monitoring or those patients with ongoing treatment lasting months or years?

In my opinion, this category is where some of that system breaks down. As I have experienced, when there are patients who are used to getting one or more tests more regularly and shorthand develops, some of this formality just isn’t necessary and becomes more cumbersome. Getting physically to the doctor’s office to receive said results in person can also be a heavy lift for patients whose lives revolve around testing, month after month after month. And the mental health impact of when and how results are received cannot be discounted.

One of the medical oncologists I saw for years in Miami always had her list of patients to call each day when tests were conducted. I could bank on a call from her around 7 pm the day the test was performed because that was her routine, her system. These calls rarely lasted longer than 5 minutes because it was her opportunity to give high level information, perhaps identify questions that needed to be addressed and talk about how next steps would be identified. She didn’t often utilize the patient portal, these quick phone calls and then a follow up visit were how she addressed test results. And that system worked, even when the pandemic hit and follow ups were conducted on telemedicine more often than not; but not all doctors are willing or able to allocate their time off the clock in this way.

Now that patients have the same or similar access to the results of testing as the ordering physician, there is a very real concern that a patient will be left bereft and struggling without receiving this information in the presence of someone who can interpret the results and help the patient understand next steps.

This is the context where there is simply no one answer, no one size fits all and so much changes over time. Some of us want the information immediately so that we can process it and be prepared to discuss what to do next with our medical team. I fall in this category now. Some of us would like to sit with a doctor and discuss the results and then make decisions with the medical team. Before my Stage IV Metastatic Breast Cancer (MBC) diagnosis in 2017, I fell into this category.

I was fortunate to have received significant information in the initial process of my experience with cancer in the physical presence of a doctor who explained the diagnosis and discussed next steps with me and my husband. If I had discovered this information through a portal, I don’t believe that would have been good for me at that point in my cancer experience; at the same time, I don’t think I had any idea at that point what would have been good for me. Now, as a relatively educated patient, I chafe at any restrictions on receiving information and I’ve gotten more and more comfortable with utilizing my portal.

The bottom line for me in this discussion is that the ability of a patient to determine their own treatment and to control the flow of information has to be foundational and respected by everyone involved. All of the information about a person inherently belongs to that person until they take action to change that. What becomes difficult for the system as a whole is understanding and discovering what a patient can handle and what a patient wants to do in this context. Add into the mix that many times the patient doesn’t know enough themselves to make a good decision and you have a recipe for disaster and struggle. Starting with a free flow of information between patients and providers is the best place to begin.

Here’s my recommendations for the system as we have it now …

For the patients: think about when and how you want to receive information and communicate that to your team. If you want to receive results of scans or testing from a person, find out how that can happen and then stick with it. This may mean resisting opening up your portal even when you know the information is there. Only you can decide when and how you want to receive information.

For the providers: ask your patients how and when they want to receive information and then ask again and again. If the patient wants to receive results in person, facilitate that happening and work with the patient to figure out how to make that work. Consider looping in other elements here such as mental health support and palliative care.

For the administrators: program into the patients portals and surveys and other metrics ways of asking the patient over and over their preferences. Opting in and out of receiving information should be clear and consistent. Disclaimers are probably a good idea here, even if no one reads them that closely. And be sure that someone talks to each patient in person about these preferences and how they are working for that patient. Offer options and ensure that there is support in place for those medical professionals who have to give bad news to patients regularly.

It’s a complicated subject as is everything that involves human beings. In a system that is always looking for the common denominator, treating each patient as an individual is complicated, but worth every effort.

13 thoughts on “Results, when do patients want to know?

  1. MBC patient here endorsing results via portal as well as in person. The oncology practice I’ve gone to for 3 years is patient centered. The admin staff schedules morning appointments for scans and blood tests and physician/NP appointments later that day. All appointments in the same building. Typically, oncologist reads & shows me the scans and gives me available blood test results so no need for days/weeks of crippling anxiety. My questions are answered. Treatment options are discussed. If the radiology report or other tests provide additional or conflicting info, the oncologist calls later. The results soon show up on the portal, which I can consult at my leisure. I use the portal to send any subsequent questions.

    Liked by 1 person

  2. As a mom of a daughter who is chronically ill and has adrenal cancer a lot of doctors are not honest with test results. Most times my daughter founds out other important information that doctors never told her, in her portal. It was only in the last two years me her mom found out that my daughter was a conjoin twin when I carried her, she absorb some of her sister and I loss the rest and not one doctor ever had the guts to tell me, if they told my husband (I file for divorce last year) nothing was ever said to me. My daughter has extra organs from her sister, her arm bone in her abdomen. I hope and pray that someone days doctors will be honest with all their patients. In the last few months I found her ultrasound in her baby book and it shows two babies not one., as well as genetic testing to confirm

    Liked by 2 people

    1. I can’t imagine how difficult your experience has been and I’m so sorry that the respective medical teams weren’t up front. Thank you for sharing these painful times and for adding another layer of understanding to this discussion. Love and light to you and your family.

      Liked by 1 person

  3. I don’t mean to sound arrogant, but I sometimes wonder what patients who are not well educated feel if/when they read scan results. My husband and I go over my results (every 4-6 weeks like clockwork) and we have dictionary.com on standby. We both agree that when we don’t ‘get it’, we ask the doc. BUT we have also caught things. Like the time the radiologist compared a new scan to a year old scan. Be your own advocate!

    Liked by 1 person

    1. I wonder this too and think back to when I wasn’t so well educated. Everyone has their own way of living with MBC or a difficult illness and sometimes not knowing all the things that could go wrong can be a valid coping mechanism. We’re all so very different.

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  4. I like the portal system – we have it in Canada as well. It’s piecemeal, however – hospital test results are a different portal than external lab results. One comes to need a HootSuite type program for results.
    In theory, our portals are only for entry-level tests. Diagnostic tests are referred back to the doctor for dissemination. This mostly works, I guess. But the portal also posts mammogram results. I found out I had a problem online, at home. It wasn’t the best.

    Liked by 1 person

  5. In 1997, we got the news that my husband’s biopsy was melanoma… on the answering machine on Friday night after getting home from dinner. It said to call back immediately. It was Friday EVENING. They were closed. So maybe I’m glad they left it?

    Using our trusty dial up AOL, we looked it up and came up on a page that said there was a five-year survival rate. (He made it four.)

    I still hate that it happened that way, but I’m not sure I would’ve appreciated a call asking us to call right away without telling us why either. It really is something people should think about and talk about. And it’s rarely discussed.

    As always, great blog post!

    Liked by 1 person

    1. Thank you for sharing your own experience. Yes, having to wait an entire weekend without having information could have been worse, but I’m so sorry you had to find out that way. These things do need to be discussed a lot more in a variety of places and HCW need a whole lot more training and support too. There aren’t any easy answers, as with most difficult things. Always appreciate your perspective and candor, my friend.

      Liked by 1 person

  6. I like the portal system myself. In our community, unfortunately, we have two different hospitals with systems that don’t communicate with each other. Being able to download test results and patient records and carry them with me in a binder has proven valuable when I have to go back and forth between people in the two systems.

    Liked by 1 person

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