I just want to say Thank You for all your amazing contributions here! I was working clinically all day (and part of the evening) and haven’t had a chance to respond to these comments, but I’ll try to do so tomorrow.
There's no "one size fits all" answer, which makes your three-part framework appealing. Empowering the patient seems to me the essential goal - then it is up to the patient to determine to what extent they want to be empowered. For me, I want to see the results asap. While I am not a doctor I believe I am reasonably capable of reviewing and understanding most of the reports I receive. Sometimes the patient needs to point out things the physician might miss. Indeed, I could make an argument that patients ought to be encouraged to at least understand how to read basic lipid and cbc panels - so they can have more informed conversations with their doctor. Obviously a more serious diagnosis requires sensitivity and a clear understanding of how to manage the information. By way of example, any man who has had prostate surgery knows what it is like to wait for the results of every follow-up PSA test. You get the results before you meet with your surgical team, so you know whether it is stable or not in advance. While this causes stress it also enables the patient to be prepared in advance with questions that they need to have answers to in order to have peace of mind and/or make informed choices. Knowledge is power, and empowerment. The medical system would function at a higher level if more patients were able to come to their meetings with doctors or nurses with more informed questions. The worst thing is for the patient to be caught off guard at the physician meeting, and afterward think "Oh, I wish I had asked this." One observation: we ask certain patients to take bp at home all the time and don't seem to worry about how they will react to the readings, which can often be unsettling - seeing results on MyChart are no different: they should be viewed not merely as "results" but as informative tools to help patient and physician manage their care more collaboratively - Jim
I want access to my test results as soon as they are available in all circumstances. Doctors do not call if the results are normal and, frankly, it's not uncommon for them to fail to call if the results are abnormal. When I have access to my own data and see something that is perplexing I can set up an appointment to discuss with my doctor. It's my body, my data, and I absolutely want to have direct access to labs. The idea that cancer is "different" and that doctors are somehow going to be able soften the blow has always struck me as bizarre. The only things Docs can do is tell you how they are going to proceed based on the diagnosis. I'd rather know there was something wrong and be able to push for an earlier consult than bumble around in ignorance.
There's a lot of validity to the conversation, but I think it's important to note that the government has weighed in here with 21st Century Cures Act Information Blocking Rule (not to mention the EHR Incentive Program), limiting what healthcare organizations and providers can legally do.
The Cures Act is what led to immediate result release and release of physician notes to patients within 24 hours. Withholding results can be information blocking, which is a practice by an "actor" that is likely to interfere with the access, exchange, or use of electronic health information (EHI), except as required by law or specified in an information blocking exception. It is designed to advocate for involving the patient in their own care. The Cures Act applied the law to healthcare providers, health IT developers of certified health IT, and health information exchanges (HIEs)/health information networks (HINs).
To legally "block" a result it has to be for the purpose of preventing harm (is the patient going to hurt themself because of what they read?), protecting privacy (which doesn't make sense in the case of releasing a patient's own result to them), or one of six other reasons. There are potential fines if these exceptions are used incorrectly. That's why we suddenly saw the big shift to instant result release in patient portals a few years ago—providers erred on the side of caution, knowing there would be some scenarios, like folks have mentioned in the comments, where the release wasn't ideal.
On a personal level, I'm a fan. I'm a younger person with a chronic illness and many people in my shoes/I've found patients like me are in a position where they need to be consistently advocating for their own needs. This is not necessarily the fault of doctors, but our overtaxed healthcare system, which is no one's fault. As a chronic illness patient, many of us collect multiple diagnoses and sometimes I have to make connections between the diseases and the results for myself because no doctor is an expert in everything (not that I am either, but you do your best to avoid the hospital). I also find that some results that are not hugely significant can explain a lot from a patient perspective (i.e. why do I keep bruising all the time? Oh, I guess my wild platelet count actually does mean or do something even if it isn't as important as my white count.) Physicians are amazing, but no one can be a superhero all the time (and answer queries on results right away). Expectation setting is key.
Some resources to read more on the catch-22 of Cures:
Re: Patient's Right of Access (from the last link above)
Under the EHR Incentive Program, participating providers are required to provide individuals with access to certain information on much faster timeframes (e.g., a discharge summary within 36 hours of discharge, a lab result within 4 business days after the provider has received the results) than under HIPAA. How do these requirements operate together?
Health care providers participating in the EHR Incentive Program may use the patient engagement tools of their Certified EHR Technology to make certain information available to patients quickly and satisfy their EHR Incentive Program objectives. Doing so also has the added benefit of satisfying an individual's request for access under HIPAA, where the PHI requested by the individual is available through the Certified EHR Technology, and the individual agrees to access the information in this way. While the Privacy Rule permits a covered entity to take up to 30 calendar days from receipt of a request to provide access (with one extension for up to an additional 30 calendar days when necessary), covered entities are strongly encouraged to provide individuals with access to their health information much sooner, and to take advantage of technologies that enable individuals to have faster or even immediate access to the information.
This is such an excellent contribution. YES! The 21st Century Cures Act is indeed what got this all going. I think that patient preferences can be worked into this. So, not sending alerts, not having (!!) show up when there's a new result...These could be things the patients select for themselves, but which of course can be changed at any time. The default is access. And any choice to hide things should be easy to undo.
Regarding privacy...generally there's very little that the patient should not have access to. But I'll give one type of example we see a lot. A patient's spouse might tell me something in confidence when the patient is off in X-ray or something. "I know that Jim says he's sober, but actually he's relapsed and is injecting heroin again. I don't want him to know I told you this, but it could change what tests you order." Knowing this would indeed increase my level of concern for some diagnoses...so then I either have to document why I am doing a test that would otherwise not be indicated (fever and chest pain in an IV drug user = concern for bacterial infection on the valves of the heart), or I have to make up some other reason (i.e. LIE!) in the chart about why I am doing a test. Lying in a medical document is not okay. But I also have to respect the stipulation of the spouse. So in this case, I might like to withhold the rationale for my medical decision making in the chart if I knew the patient was going to read it, because the spouse told me this information in confidence, but wanted me to use that information to aid in the patient's care.
The ethics here are pretty tough. If the patient asks "hey why are you ordering a cardiac ultrasound?", the honest answer would be "your wife told me you are injecting drugs again and I need to rule out endocarditis." But that would violate the spouse's stipulation. So, I might tell him "well, as a prior drug user, you are at risk of endocarditis." This is TRUE, albeit most of the risk is *not* due to prior use but rather, to the chance of relapse. True-ish. So, in this hypothetical situation, I'm walking a very uncomfortable line in terms of wordsmithing. But in the chart, I think that kind of wordsmithing would be akin to knowingly writing a false statement in a chart--which is definitely not legal. In this case, I'd really prefer to just write the whole truth in the chart, but restrict the patient's access. What do you think?
I am the person who doesn’t want anyone knowing anything about me that I don’t know including test results. So I like that results show in MyChart. It’s also true these days that the follow up appt could be weeks away - so app based results can be incredibly helpful and timely.
That said a friend had a biopsy and found out two days later via app that he had cancer - he didn’t even have a f/u appt scheduled because they were waiting on the biopsy results. And he was not expecting that the biopsy results would be in the app, and he saw the results Before his doctor. That was not good - actually it was an awful experience for him.
That said EMR is here to stay, and good for so many reasons. So I would like an app that is much easier to navigate (!), and I like the idea of being able to decide how and when the results are visible, as in your example. An anxious person could decide to hide results until they are talking with their provider. Someone with a medical background could opt to see results immediately because they may feel more comfortable providing the context.
Finally, and this just occurred to me right now, I think it’s reasonable to ask providers to include links to basic information that is relevant. We all know that everyone is immediately going to WebMD , where there is no context, so why not provide the context that is relevant.
Good luck figuring this out! Hope you get great feedback.
It is so important that we warn our patients that information is going to be headed their way. This is such a good point you brought up. I will just add that. It's probably not possible for providers for include much information in these reports because a lot of times that it worked that isn't going to happen by the same doctor who makes the report. So a pathologist might finalize the report, but it's the oncologist who is going to tell you what that means. Sure the pathologist might have a pretty good idea in some cases and maybe even a lot of cases… But obviously, if they could answer all the questions if you oncologist, can you answer, they wouldn't be a different specialty!
Taking tests on a Friday and getting results over the weekend is awful, if it’s good results Ofcourse it’s ok. But cancer patients are given devastating results this way via portal. Think it’s awful. I find The portal to be stressful in this scenario. No testing on Fridays!
Communicating w a dr thru the portal in a timely fashion is great! So it has its pros and cons . Mixed feelings.
Talking to your doctor or other clinicians through the portal is really great. It cuts out a lot of waiting and can be really helpful. I will say that there's been some outrage about doctors billing for doing things like writing patients emails. I'll defend my colleagues here. Writing emails that are thoughtful and caring and that rely on one's medical expertise is work and should not be expected as free labor. Thx!
I'm a physician and I want to know my results--often I take more time to review them and can put them in the context of prior results. Once I did find an unfavorable pathology prior to my surgeon, but she was immediately available.
I am a patient at your institution at a specialized clinic and I get a written summary of my results with a note "I am too busy to discuss these, please schedule an appointment if necessary"--I find that unacceptable. The labs are esoteric. The physician in question has told me that he doesn't respond to his portal.
I think part of finding the right doctor for you (in the year 2024) is figuring out who meets your needs. I recently told a friend looking for a surgeon that it was more important to find out how responsive they and their staff are on MyChart than it is to know how great they are in the operating room (caveat: the case is not expected to be challenging). Now, for some people who will *never* use MyChart, that would not matter. It's so individual, isn't it?
The doctor in question has given me his cell--so I am able to reach him and don't expect anything in MyChart. He has told me that if he wants to stay sane/married he can't respond to portal. I think he may give many or most patients his cell--which is disruptive during office visits.
My primary immediately responds to any message and I am very careful not to message her often or on weekend/holidays. And to let her know I don't need a response, mostly it's an FYI.
I know I'm weird but I keep spreadsheets for each family member's labs and I'm grateful to have access to complete, rapid results that I can save. I have longer term records than my doctors' office does.
complex question. In the “before times” I would trust my specialist who said ‘99% certain it is benign - not to worry’ and be OK waiting for the follow-up appt post surgery. With the Portal, a couple years ago I was anxious seeing the email that a test result was in my chart online…. knowing the path report was there..waited another week and decided I needed to know the results. As a former P.A. I could fairly well interpret it..and felt relieved; follow up was another month away. My concern is availability/access to medical providers these days if the results had been the unexpected bad news. Would I have suffered knowing the results waiting weeks for my follow-up appt? (yes). I live in a rural area where this particular office was an hour and a half away.
Another medical friend chose not to look even though she has much better, very ready access to top tertiary care.
I am a retired RN. Recently I was admitted to the hospital from the ER with severe and symptomatic anemia. I received 2 units of packed cells and waited as we ran tests and procedures to figure out why. It was fabulous to be able to look at test results as soon as available, often before the medical staff saw them. It was invaluable to me in reducing my anxiety to be able to view the diagnostic process as it unfolded as well as being able to see that the therapeutic process was working too. I was able to send test results to my family members also, so they were kept updated. Turned out to be a bleeding ulcer from long-term NSAID use for arthritis pain, which showed no obvious symptoms. I made a full recovery.
One of the strangest things is when patients in the ER know a result before I do. Sometimes I am "rounding" and will see 3 patients in a row before going back to the computer. By the time I get to the 2nd or 3rd patient, a new result may have popped up.
Recently, a patient's ultrasound result came up on their phone. They read it to me and I told them what it meant right there.
There is no reason why a program like MyChart can’t have an opt-in and opt-out option PER test. For a lot of patients who may know they are going to be anxious this would be ideal. I as a physician wouldn’t even mind discussing the tests ordered in my primary care office and guiding the patient through whether they want to opt in or opt out on their device. As it is, I routinely ask patients if they want to get a phone call for normal test results.
I was a patient with a chronic condition before I was a physician and I’m really glad there was no MyChart in my young adult years because I was getting so many results. I would have been quite anxious. In the past five years I have gotten some concerning test results and if I didn’t have a husband and many friends who are also physician colleagues, I would’ve spent too many anxious hours on biopsy results, etc.
My PCP is really good about putting a few comments on each test result in MyChart the same day the results appear, though with more serious tests (I had a little shadow on a lung) he phoned the evening the results came in (it was calcified pleural scarring). I think the option to hide the results until the doc could either comment or call would be good.
I'm an RN, I want to know as soon as the result is available. It has taken me years to find a doctor that I trust, that listens to me and helps me formulate a plan for my care. If I get a lab result that is concerning, I have a better chance of getting the care that I need when I can advocate for myself than waiting for a medical assistant to prioritize my care and call attention to a problem to my doctor. That said, if I had a serious medical problem that I was being treated for I might change my mind.
Yeah I think we medical professionals are good at that part. But the more complicated it gets, the harder the navigation becomes. My friend Seth wrote this beautiful piece about his journey to a rare diagnosis and how hard it was, even as an MD. (Might be paywalled). https://jamanetwork.com/journals/jamaneurology/fullarticle/2787972
I was able to read it, so great that he was willing to share:)
But it makes me sad that quality medical care is so difficult to achieve. I'm sure from a quantitative perspective medical care has improved by hospital and clinic systems using a one size fits all care model. But this kind of care cannot replace the attention of a caring physician who seeks the best treatment for their patient, who is a person, not a disease.
As a patient and the spouse of a cancer patient and also the HCPOA for my elderly parents I come down strongly on wanting to know as soon as possible. My biggest complaint about electronic reports is that I have had to try to navigate at least six different systems with no integration of the info and find some of them really lacking. MyChart seems the best so far.
But I think differences in personalities and preferences should be accommodated as I'm sure not everyone is comfortable reading those reports.
Well, unfortunately I think the question about receiving your results in your inbox/portal is moot as the ship has already sailed. The real next phase is socializing all of us patients as to whether and when we choose to look at it. The details that are being provided in this new era of transparency is amazing. A friend just shared her medical surgical notes and I was reassured that "time out was called", "sponges were counted x2". These are things patients NEVER knew and may have led to serious consequences...thinking here of the IOM report.
Now, an imperfect analogy, if my bank detects a fraud alert and notifies me, they still leave the choice to me to look and contact them (in the most part).
The current system should rather create a reasonable expectation for patients as to when to hear back from the medical team, and who to hear back from (MD or nurse or a note would just be put in the chart).
The other phase that must be developed in this context, with the awareness that patients are now have receiving these results directly, is to also where possible and feasible, incentivize the results providers (labs, pathologists, radiologists etc.) to include what the results also mean in plain language for the patient. The presumption is that giving the history and circumstances, ALL trained ordering physicians would interpret the results the same way. Our current experience is that, that is not true especially depending on the level of experience and training of the ordering physician. That is the new relevant phase that we have to inject patients into, by giving them the plain language interpretation of the results to help guide the next steps. That would minimize the googling. Otherwise, there would now be apps and software that would be developed to do so. It would also open up the results providers to all our scrutiny to the quality and details of the results they provide...and all us to even grade them, thus improving quality of care. Just think sending two same specimens to two pathologists and the two reports you get back....we all patients hopefully would be better off.
I'm of the ilk that I'd like access as soon as the results are ready, but I will only access them when I want to. I have fairly good discipline about not looking at my phone when it's late, so I may not even see the notification til the next day. In addition, I have pretty good googling skills and logical thinking. so am unlikely to panic if I see something I don't understand.
I just want to say Thank You for all your amazing contributions here! I was working clinically all day (and part of the evening) and haven’t had a chance to respond to these comments, but I’ll try to do so tomorrow.
🙏🙏🙏
There's no "one size fits all" answer, which makes your three-part framework appealing. Empowering the patient seems to me the essential goal - then it is up to the patient to determine to what extent they want to be empowered. For me, I want to see the results asap. While I am not a doctor I believe I am reasonably capable of reviewing and understanding most of the reports I receive. Sometimes the patient needs to point out things the physician might miss. Indeed, I could make an argument that patients ought to be encouraged to at least understand how to read basic lipid and cbc panels - so they can have more informed conversations with their doctor. Obviously a more serious diagnosis requires sensitivity and a clear understanding of how to manage the information. By way of example, any man who has had prostate surgery knows what it is like to wait for the results of every follow-up PSA test. You get the results before you meet with your surgical team, so you know whether it is stable or not in advance. While this causes stress it also enables the patient to be prepared in advance with questions that they need to have answers to in order to have peace of mind and/or make informed choices. Knowledge is power, and empowerment. The medical system would function at a higher level if more patients were able to come to their meetings with doctors or nurses with more informed questions. The worst thing is for the patient to be caught off guard at the physician meeting, and afterward think "Oh, I wish I had asked this." One observation: we ask certain patients to take bp at home all the time and don't seem to worry about how they will react to the readings, which can often be unsettling - seeing results on MyChart are no different: they should be viewed not merely as "results" but as informative tools to help patient and physician manage their care more collaboratively - Jim
PSA results in general are confusing, let alone getting them on MyChart!
I like your point about how this allows patients to think of questions ahead of time. Great one!
I want access to my test results as soon as they are available in all circumstances. Doctors do not call if the results are normal and, frankly, it's not uncommon for them to fail to call if the results are abnormal. When I have access to my own data and see something that is perplexing I can set up an appointment to discuss with my doctor. It's my body, my data, and I absolutely want to have direct access to labs. The idea that cancer is "different" and that doctors are somehow going to be able soften the blow has always struck me as bizarre. The only things Docs can do is tell you how they are going to proceed based on the diagnosis. I'd rather know there was something wrong and be able to push for an earlier consult than bumble around in ignorance.
Reasonable!
There's a lot of validity to the conversation, but I think it's important to note that the government has weighed in here with 21st Century Cures Act Information Blocking Rule (not to mention the EHR Incentive Program), limiting what healthcare organizations and providers can legally do.
The Cures Act is what led to immediate result release and release of physician notes to patients within 24 hours. Withholding results can be information blocking, which is a practice by an "actor" that is likely to interfere with the access, exchange, or use of electronic health information (EHI), except as required by law or specified in an information blocking exception. It is designed to advocate for involving the patient in their own care. The Cures Act applied the law to healthcare providers, health IT developers of certified health IT, and health information exchanges (HIEs)/health information networks (HINs).
To legally "block" a result it has to be for the purpose of preventing harm (is the patient going to hurt themself because of what they read?), protecting privacy (which doesn't make sense in the case of releasing a patient's own result to them), or one of six other reasons. There are potential fines if these exceptions are used incorrectly. That's why we suddenly saw the big shift to instant result release in patient portals a few years ago—providers erred on the side of caution, knowing there would be some scenarios, like folks have mentioned in the comments, where the release wasn't ideal.
On a personal level, I'm a fan. I'm a younger person with a chronic illness and many people in my shoes/I've found patients like me are in a position where they need to be consistently advocating for their own needs. This is not necessarily the fault of doctors, but our overtaxed healthcare system, which is no one's fault. As a chronic illness patient, many of us collect multiple diagnoses and sometimes I have to make connections between the diseases and the results for myself because no doctor is an expert in everything (not that I am either, but you do your best to avoid the hospital). I also find that some results that are not hugely significant can explain a lot from a patient perspective (i.e. why do I keep bruising all the time? Oh, I guess my wild platelet count actually does mean or do something even if it isn't as important as my white count.) Physicians are amazing, but no one can be a superhero all the time (and answer queries on results right away). Expectation setting is key.
Some resources to read more on the catch-22 of Cures:
https://www.healthit.gov/topic/information-blocking
https://www.opennotes.org/onc-federal-rule/
https://www.healthit.gov/faq/if-actor-does-not-fulfill-request-access-exchange-and-use-ehi-any-manner-requested-they-have
https://www.hhs.gov/hipaa/for-professionals/privacy/guidance/access/index.html
Re: Patient's Right of Access (from the last link above)
Under the EHR Incentive Program, participating providers are required to provide individuals with access to certain information on much faster timeframes (e.g., a discharge summary within 36 hours of discharge, a lab result within 4 business days after the provider has received the results) than under HIPAA. How do these requirements operate together?
Health care providers participating in the EHR Incentive Program may use the patient engagement tools of their Certified EHR Technology to make certain information available to patients quickly and satisfy their EHR Incentive Program objectives. Doing so also has the added benefit of satisfying an individual's request for access under HIPAA, where the PHI requested by the individual is available through the Certified EHR Technology, and the individual agrees to access the information in this way. While the Privacy Rule permits a covered entity to take up to 30 calendar days from receipt of a request to provide access (with one extension for up to an additional 30 calendar days when necessary), covered entities are strongly encouraged to provide individuals with access to their health information much sooner, and to take advantage of technologies that enable individuals to have faster or even immediate access to the information.
This is such an excellent contribution. YES! The 21st Century Cures Act is indeed what got this all going. I think that patient preferences can be worked into this. So, not sending alerts, not having (!!) show up when there's a new result...These could be things the patients select for themselves, but which of course can be changed at any time. The default is access. And any choice to hide things should be easy to undo.
Regarding privacy...generally there's very little that the patient should not have access to. But I'll give one type of example we see a lot. A patient's spouse might tell me something in confidence when the patient is off in X-ray or something. "I know that Jim says he's sober, but actually he's relapsed and is injecting heroin again. I don't want him to know I told you this, but it could change what tests you order." Knowing this would indeed increase my level of concern for some diagnoses...so then I either have to document why I am doing a test that would otherwise not be indicated (fever and chest pain in an IV drug user = concern for bacterial infection on the valves of the heart), or I have to make up some other reason (i.e. LIE!) in the chart about why I am doing a test. Lying in a medical document is not okay. But I also have to respect the stipulation of the spouse. So in this case, I might like to withhold the rationale for my medical decision making in the chart if I knew the patient was going to read it, because the spouse told me this information in confidence, but wanted me to use that information to aid in the patient's care.
The ethics here are pretty tough. If the patient asks "hey why are you ordering a cardiac ultrasound?", the honest answer would be "your wife told me you are injecting drugs again and I need to rule out endocarditis." But that would violate the spouse's stipulation. So, I might tell him "well, as a prior drug user, you are at risk of endocarditis." This is TRUE, albeit most of the risk is *not* due to prior use but rather, to the chance of relapse. True-ish. So, in this hypothetical situation, I'm walking a very uncomfortable line in terms of wordsmithing. But in the chart, I think that kind of wordsmithing would be akin to knowingly writing a false statement in a chart--which is definitely not legal. In this case, I'd really prefer to just write the whole truth in the chart, but restrict the patient's access. What do you think?
I am the person who doesn’t want anyone knowing anything about me that I don’t know including test results. So I like that results show in MyChart. It’s also true these days that the follow up appt could be weeks away - so app based results can be incredibly helpful and timely.
That said a friend had a biopsy and found out two days later via app that he had cancer - he didn’t even have a f/u appt scheduled because they were waiting on the biopsy results. And he was not expecting that the biopsy results would be in the app, and he saw the results Before his doctor. That was not good - actually it was an awful experience for him.
That said EMR is here to stay, and good for so many reasons. So I would like an app that is much easier to navigate (!), and I like the idea of being able to decide how and when the results are visible, as in your example. An anxious person could decide to hide results until they are talking with their provider. Someone with a medical background could opt to see results immediately because they may feel more comfortable providing the context.
Finally, and this just occurred to me right now, I think it’s reasonable to ask providers to include links to basic information that is relevant. We all know that everyone is immediately going to WebMD , where there is no context, so why not provide the context that is relevant.
Good luck figuring this out! Hope you get great feedback.
It is so important that we warn our patients that information is going to be headed their way. This is such a good point you brought up. I will just add that. It's probably not possible for providers for include much information in these reports because a lot of times that it worked that isn't going to happen by the same doctor who makes the report. So a pathologist might finalize the report, but it's the oncologist who is going to tell you what that means. Sure the pathologist might have a pretty good idea in some cases and maybe even a lot of cases… But obviously, if they could answer all the questions if you oncologist, can you answer, they wouldn't be a different specialty!
I get blood work done at Quest and I find their website very informative about what the test results mean
I think this works well for simple things like iron deficiency anemia. But the complexity of a lot of tests makes it a lot harder in many situations
Taking tests on a Friday and getting results over the weekend is awful, if it’s good results Ofcourse it’s ok. But cancer patients are given devastating results this way via portal. Think it’s awful. I find The portal to be stressful in this scenario. No testing on Fridays!
Communicating w a dr thru the portal in a timely fashion is great! So it has its pros and cons . Mixed feelings.
Talking to your doctor or other clinicians through the portal is really great. It cuts out a lot of waiting and can be really helpful. I will say that there's been some outrage about doctors billing for doing things like writing patients emails. I'll defend my colleagues here. Writing emails that are thoughtful and caring and that rely on one's medical expertise is work and should not be expected as free labor. Thx!
I'm a physician and I want to know my results--often I take more time to review them and can put them in the context of prior results. Once I did find an unfavorable pathology prior to my surgeon, but she was immediately available.
I am a patient at your institution at a specialized clinic and I get a written summary of my results with a note "I am too busy to discuss these, please schedule an appointment if necessary"--I find that unacceptable. The labs are esoteric. The physician in question has told me that he doesn't respond to his portal.
I think part of finding the right doctor for you (in the year 2024) is figuring out who meets your needs. I recently told a friend looking for a surgeon that it was more important to find out how responsive they and their staff are on MyChart than it is to know how great they are in the operating room (caveat: the case is not expected to be challenging). Now, for some people who will *never* use MyChart, that would not matter. It's so individual, isn't it?
The doctor in question has given me his cell--so I am able to reach him and don't expect anything in MyChart. He has told me that if he wants to stay sane/married he can't respond to portal. I think he may give many or most patients his cell--which is disruptive during office visits.
My primary immediately responds to any message and I am very careful not to message her often or on weekend/holidays. And to let her know I don't need a response, mostly it's an FYI.
I know I'm weird but I keep spreadsheets for each family member's labs and I'm grateful to have access to complete, rapid results that I can save. I have longer term records than my doctors' office does.
Do you do this work for hire? :) I know people who would pay for this kind of thing!
AI should be able to do this for all of us!
I keep a spreadsheet of my own labs, just so I can look at trends over time.
Exactly!
Me too
complex question. In the “before times” I would trust my specialist who said ‘99% certain it is benign - not to worry’ and be OK waiting for the follow-up appt post surgery. With the Portal, a couple years ago I was anxious seeing the email that a test result was in my chart online…. knowing the path report was there..waited another week and decided I needed to know the results. As a former P.A. I could fairly well interpret it..and felt relieved; follow up was another month away. My concern is availability/access to medical providers these days if the results had been the unexpected bad news. Would I have suffered knowing the results waiting weeks for my follow-up appt? (yes). I live in a rural area where this particular office was an hour and a half away.
Another medical friend chose not to look even though she has much better, very ready access to top tertiary care.
There's a real difference between medical professionals and non. It's hard to imagine not looking when you're an insider...
I am a retired RN. Recently I was admitted to the hospital from the ER with severe and symptomatic anemia. I received 2 units of packed cells and waited as we ran tests and procedures to figure out why. It was fabulous to be able to look at test results as soon as available, often before the medical staff saw them. It was invaluable to me in reducing my anxiety to be able to view the diagnostic process as it unfolded as well as being able to see that the therapeutic process was working too. I was able to send test results to my family members also, so they were kept updated. Turned out to be a bleeding ulcer from long-term NSAID use for arthritis pain, which showed no obvious symptoms. I made a full recovery.
One of the strangest things is when patients in the ER know a result before I do. Sometimes I am "rounding" and will see 3 patients in a row before going back to the computer. By the time I get to the 2nd or 3rd patient, a new result may have popped up.
Recently, a patient's ultrasound result came up on their phone. They read it to me and I told them what it meant right there.
There is no reason why a program like MyChart can’t have an opt-in and opt-out option PER test. For a lot of patients who may know they are going to be anxious this would be ideal. I as a physician wouldn’t even mind discussing the tests ordered in my primary care office and guiding the patient through whether they want to opt in or opt out on their device. As it is, I routinely ask patients if they want to get a phone call for normal test results.
I was a patient with a chronic condition before I was a physician and I’m really glad there was no MyChart in my young adult years because I was getting so many results. I would have been quite anxious. In the past five years I have gotten some concerning test results and if I didn’t have a husband and many friends who are also physician colleagues, I would’ve spent too many anxious hours on biopsy results, etc.
Yes, I think there can be general preferences and specific ones. Like "give me everything, except pathology reports".
My PCP is really good about putting a few comments on each test result in MyChart the same day the results appear, though with more serious tests (I had a little shadow on a lung) he phoned the evening the results came in (it was calcified pleural scarring). I think the option to hide the results until the doc could either comment or call would be good.
Thank you for posting this. Scary results need explanation. Not every doc has time to make that phone call. But when they do, it's really good.
I'm an RN, I want to know as soon as the result is available. It has taken me years to find a doctor that I trust, that listens to me and helps me formulate a plan for my care. If I get a lab result that is concerning, I have a better chance of getting the care that I need when I can advocate for myself than waiting for a medical assistant to prioritize my care and call attention to a problem to my doctor. That said, if I had a serious medical problem that I was being treated for I might change my mind.
Yeah I think we medical professionals are good at that part. But the more complicated it gets, the harder the navigation becomes. My friend Seth wrote this beautiful piece about his journey to a rare diagnosis and how hard it was, even as an MD. (Might be paywalled). https://jamanetwork.com/journals/jamaneurology/fullarticle/2787972
I was able to read it, so great that he was willing to share:)
But it makes me sad that quality medical care is so difficult to achieve. I'm sure from a quantitative perspective medical care has improved by hospital and clinic systems using a one size fits all care model. But this kind of care cannot replace the attention of a caring physician who seeks the best treatment for their patient, who is a person, not a disease.
As a patient and the spouse of a cancer patient and also the HCPOA for my elderly parents I come down strongly on wanting to know as soon as possible. My biggest complaint about electronic reports is that I have had to try to navigate at least six different systems with no integration of the info and find some of them really lacking. MyChart seems the best so far.
But I think differences in personalities and preferences should be accommodated as I'm sure not everyone is comfortable reading those reports.
preference is a part of autonomy. That is what I'm concluding from the comments here!
Well, unfortunately I think the question about receiving your results in your inbox/portal is moot as the ship has already sailed. The real next phase is socializing all of us patients as to whether and when we choose to look at it. The details that are being provided in this new era of transparency is amazing. A friend just shared her medical surgical notes and I was reassured that "time out was called", "sponges were counted x2". These are things patients NEVER knew and may have led to serious consequences...thinking here of the IOM report.
Now, an imperfect analogy, if my bank detects a fraud alert and notifies me, they still leave the choice to me to look and contact them (in the most part).
The current system should rather create a reasonable expectation for patients as to when to hear back from the medical team, and who to hear back from (MD or nurse or a note would just be put in the chart).
The other phase that must be developed in this context, with the awareness that patients are now have receiving these results directly, is to also where possible and feasible, incentivize the results providers (labs, pathologists, radiologists etc.) to include what the results also mean in plain language for the patient. The presumption is that giving the history and circumstances, ALL trained ordering physicians would interpret the results the same way. Our current experience is that, that is not true especially depending on the level of experience and training of the ordering physician. That is the new relevant phase that we have to inject patients into, by giving them the plain language interpretation of the results to help guide the next steps. That would minimize the googling. Otherwise, there would now be apps and software that would be developed to do so. It would also open up the results providers to all our scrutiny to the quality and details of the results they provide...and all us to even grade them, thus improving quality of care. Just think sending two same specimens to two pathologists and the two reports you get back....we all patients hopefully would be better off.
I do think that the fact that patients are reading this stuff has already changed how we document things.
I'm of the ilk that I'd like access as soon as the results are ready, but I will only access them when I want to. I have fairly good discipline about not looking at my phone when it's late, so I may not even see the notification til the next day. In addition, I have pretty good googling skills and logical thinking. so am unlikely to panic if I see something I don't understand.
Know thyself :) You do!