Backlash Coming Against Instant Disclosure of Health Records
Comments
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Great point about reading the “tea leaves” if we do or do not get a phone call. When we are anxious we are going to be anxious no matter what, whether we do or do not have our results, and I think people who may “over use” access to the doctor & staff will probably be that way no matter what.
On another note, when I see the A.M.A is involved in an issue like this one, I surmise that their motive is gatekeeping and maintaining a power differential. This isn’t 1910 anymore where most people were uneducated farmers or factory workers and doctors had the key to special knowledge the rest of us could not comprehend. That may be a harsh assessment but I base it on the track record of the AMA
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Cythea has a great point about making it an opt-in option, preferably with a GIANT WARNING or information box before doing so (as well as making it easy to opt back out if you find you can't deal with it). Actually, they already have that on the NHS app here about being able to read results before talking to a doctor, but its up to you, etc. Thats if they dont actually lose the results in the first place. Its a mess over here with too many platforms that aren't connected. Its a mess regardless - Id love to read the full radiology reports but cant!
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I appreciate receiving the results asap . I completely agree with Cynthea's "opt-in" choice which could be made when you add the cancer center to your MyChart or whatever online portal is in use . Scan anxiety is hard enough I don't want to wait a week to find out if my oncologist is too busy/ over scheduled .
I would like to know if scans show changes and it's likely iwill be changing treatment so I can prepare myself before I meet with my oncologist.
I think my cancer center already has the opt out choice available but I could be wrong .
Pat aka Sadie's Servant , your post illustrates how important it is that we know our test results. I'm relieved to know you are doing better but am so sorry you were hospitalized with kidney issues .0 -
Just adding a huge YES to everything margaritams said.
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I didn’t know that this was a new rule and was floored when I first got scan results saying that I had metastatic bc. I had gotten a follow up ct scan for a different reason and was totally expecting to see a good result since results came so quickly. I thought if it was something bad someone would call me.Now that I know I’m better prepared.
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Good topic! Maybe the initial news that I was Stage IV was better coming from my doctor, but now I want to see my test results as soon as possible.
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I was just in my portal yesterday and saw where my oncologist has "release results immediately to the patient". I also know that he and I will discuss my blood test results in comparison to the previous tests. When I first started going to see him, I had brought up some prior test results, so he caught on early that I review them and want to discuss and always does with me. Whether good or bad. I'm sure not every patient does this because he was a little surprised at first. When I was ready to start on Verzenio, he told me to read the Monarch E study, because he knew I would as I'd already been down a rabbit hole of medical studies. I'm thankful to have the option of seeing them. And if I didn't want to, I just wouldn't look, like a lot of you have said.
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margaritams, it's a serious subject, but I did have to laugh at your describing the insidiousness of returning a missed call to the onc's office because I have been there many times! “Please listen to the entire message as our options have recently changed." I recently called a hospital nuclear dept about an appt and when a nurse eventually picked up the phone, I pointedly asked, “Am I finally talking to a real, live person who works in the nuclear dept?" because the recorded message was sooo lengthy.
People know that they're opening medical results. It's not something that randomly pops open on a computer screen. One must deliberately log in and click certain links to get this information. Anyone doing so must take responsibility if they decide to venture into the unknown. Really, the simplest solution is for the patient to have a opt in/opt out choice. I'm not sure what the doctors' arguments are for delaying the posting of results. I recently had a heart stress test and the results popped up on the portal. I have no knowledge of what I would be reading, so I chose not to open and read it. That was a Friday so I went all weekend not knowing and then got a call early Monday that things were good.
We all get nervous waiting for and then looking at results. Do doctors understand what that's like, especially when a person scans frequently?
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Related article: “Emailing your doctor may carry a fee”
I didn’t encounter a paywall at that site
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I also just hate calling those doctor's offices! I can't believe they make sick people go through that rat race. I would much rather schedule via email, but my portal system has limited just how much you can do that. If it's an established office you've been to, you can email them, but if it's a new place they want you to go (e.g. OT/PT, Nuclear Medicine, etc), and you've never been there before, you have to call and go through that mess. They used to have a way, in the portal, that you could locate and email all of the various related offices and ask for an appointment.
As for seeing results before talking to the doctor, I happen to prefer it, but if you're ever nervous or scared, I agree with Divine, just don't look. You have to go to some effort to look them up, so just don't. Also, I read some terrible results that came in while I was waiting in the ER (I wanted to) and got the gist, but I haven't really wanted to go back and look at those in detail again, since I'm reeling quite a bit, but they are there if and whenever I want to review more. I absolutely like having the choice.
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I am working with my doctor's office to remove the results.. cause unnecessary stress on some people. to see the results and not knowing what is what is so stressful in turn folks turn to dr. google which makes matters worse. it should be up to the patient to opt out of this option. i rather talk to my doctor and them to explain then go down an unnecessary rabbit hole..
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Just chiming in because I care about this issue!
I feel all test results and other records should be made available immediately. These records legally belong to the patient. Blocking access to records even temporarily would cause patient anxiety, and could cause harm or death. I don't think there are any legal or moral justifications for blocking access.
If there is genuine concern about patient harm from viewing test results, then add a disclosure to the standard patient paperwork. A "trigger-warning". Instead of censorship.
The AMA code of ethics used to tell doctors not to disclose "gloomy" information to patients. The current code of ethics says the opposite. So this debate has been going on for a long time.
I think the best solution is the one we have now, which allows each patient to choose exactly which of their records to access.
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I dont want them immediately. Had too many sketchy results that turned out to be nothing. But I do need my attivan while waiting! I also told my primary care doctor if and when I go terminal I want her to tell me. Not some stranger. We've been on a long journey together and it feels as it should. Maybe it won't be as long as I want it to be but it has been longer than I hoped or dreamed. Maybe their is a way to opt in or out of notifications?
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At the facility I go to they will let you opt out, but you have to notify them that that's what you want, otherwise the results are automatically posted. I'm one who prefers to see them as they come. People have a choice.
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it's so easy to just not look if someone doesn't want to see them. That's all it takes.
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You'd think but for those of us with anxiety not looking is horrific also. It's a no win situation with us. However, I will say I don't think the law should change just because there are a few of us who have emotional difficulties. What I'd prefer is for the sites to upgrade perhaps so that everyone can have the choice to not be sent notifications when results come back. If we're not triggered then we don't have the conundrum of looking or not. Doesn't seem like that would be a hard fix.
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Wrenn--totally agree; great post.
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I understand that anxiety and personal preferences play a part in how we view this issue. As others have said, test results do not just pop up without a bit of effort on the part of the patient. As adults, I think that those who do not wish to see results need to be responsible for not looking. If your medical provider offers an opt out option then those with anxiety should definitely take it! I for one am very happy to see all test results ASAP but if I wasn’t, I simply wouldn’t log in and look. I can’t stand beets. I don’t even like to look at beets but I’m okay with my grocery story carrying them because I know others like them. I can handle that
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Reading some of the posts here, I realize I have a similar issue, but with billing information, not test results. Every time I look at the online billing, I see issues and errors (which end up being corrected later anyway) and it makes me anxious (and annoyed)! And yet, whenever I log in for results, I end up clicking the "billing information" tab...even though I know I will regret it.
Maybe a good solution to all this is, have separate portals for the financial and the medical information. Plenty of other types of websites have different areas with separate logins -- but if you designate the same password for multiple areas, it logs you into all of them simultaneously.
I feel like that could be better and more ethical for so many reasons.
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The billing information is essential when things go wrong with insurance claims. My surgical tumor pathology was paid for and then retroactively denied fourteen times over 21 months for all kinds of strange reasons: not medically necessary, same procedure as biopsy pathology, same procedure as Oncotype DX, duplicate claim, claim submitted too late, and (my favorite) "We took another look at this claim and decided something had to change." I thought things were settled after I filed and won an appeal a year after surgery but eight months after that the same claim was denied again and eventually paid once more. I'm not too confident that this won't continue in the future. While this information could be found by scrolling through the many claims on my insurance portal and letters were mailed six weeks after each denial, it was much easier to keep track of the situation on my patient portal. Also, when dealing with the hospital billing department I would have to check dates and other information in the medical portions of my record so I appreciated having everything in one place.
Since I received care for the same diagnosis in two hospital systems and at two different hospitals within each system I found it bad enough juggling two hospital portals and the health insurance portal simultaneously (information is shared between hospital systems but is not available in complete detail.) Just as with the test results, don't click if you don't want to see what is there. I find the billing section a convenient way to be notified of insurance problems as soon as they arise. It is too complicated to have separate logins for appointments, after visit summaries, test results, provider communication, billing and all the other tabs that appear in the portal.
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No way do I want a separate site for billing. I have enough damn passwords already. And I like having all aspects of my medical care, including financial, in one place.
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alicebastable Haha ok I defer to you on this, your feelings are definitely stronger than mine! :-)
Hopefully the law will stand, so we will still have immediate access to our medical records. I remember the bad old days when some doctors required an in-person followup appointment, even just to get routine blood or pap results. Expensive and stressful to take the time off work/school.
I just worry healthcare business lobbyists are disingenuous, using "patient anxiety" (which of course is a valid concern) to justify overturning patient-rights laws, when their true motivation is financial.
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“No way do I want a separate site for billing. I have enough damn passwords already. And I like having all aspects of my medical care, including financial, in one place.“
Alice, I’m right with you there! My brain has no more bandwidth for unique and strong passwords 🙃.
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Ditto on not wanting a separate portal for billing and results. My portal has tabs for billing, test results, visits, etc. Works for me. exbrnxgrl, I got a laugh out of your comments about beets. I did observe a woman (obviously with issues) who rammed her shopping cart into a wine display INTENTIONALLY because she thought alcohol was bad. I left before I saw any more.
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I'm the one who made the post about the possibility of separate medical and financial systems. You guys are totally right, it was a bad idea. It would just make everyone unhappy. So I hereby take back that suggestion!
Either of the other two possibilities would at least make some people happy :-)
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sarahnh, I hope you didn't feel judged or attacked. You were just throwing out an idea.
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I had not seen this article or this topic before. It made for some really thought provoking ideas. I'm trying to remember myself at the time of my first diagnosis vs now, with stage IV to the bones. I think in both situations, initial and metastatic diagnoses, I was glad that the notification was done over the phone and in person respectively. Now that I'm a few years into having metastatic disease I want to know as soon as I can. I'm familiar with reading scans and labs so even bad results don't send me into panic mode. Sometimes I want that time to myself to formulate "what's next" questions for my MO to make the most of that appointment or call. So I guess that lands me in the camp of, if you want to wait for the doc do that. I question whether I would have had the patience to wait but that's a me problem, isn't it? LOL.
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Thanks sunshine99 - that was nice of you to post :-)
Yes you are right, I was throwing out a random idea...not a popular one it turns out! I guess it proves there are even worse alternatives than provider-gatekeeping.
I agree with the majority here - I think we should have immediate access to all of our medical records. I personally love having independent access to my own test results, and would hate to go back to the bad old days.
I've worked with medical records (still a custodian for a closed practice - patients have to request their records from me). So I am interested in people's opinions on this.
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All right. Now you all have made me jealous, because my current portal doesn't include financial! ☹ Buuuut, there's no password for the financial portal (it's still secure, they just use a different verification process), so at least there's that.
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I do wonder if there is or will be an assumption that patients WILL get all their news through the portal, and the health care team won't "bother" calling you when something significant comes up. I mean, it reminds me of my mom when she was very unhealthy. She'd go to the doctor or for tests and later I'd ask about it. She'd say she didn't know, and they would call her if she needed to know anything. While that might have been true most of the time, I'm sure her passivity meant she didn't get all the information that might have helped her.
Not sure I'm being clear here, but I wonder, how does the doc know which patients are which? Who is going to be glad to see test results of any kind and who simply isn't going to do that, and of those who do look, who can wait until their next appt in a week or more to discuss it, and who can see it but have no clue what they're looking at?
All those thoughts posted, I'm firmly in the camp of wanting to get the results immediately. But communication between patient and health care providers is still essential.
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