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Backlash Coming Against Instant Disclosure of Health Records

In Politico today, there's an article about doctors lobbying the HHS against immediate release of test results & other electronic data in patient portals, as has been required for more than a year now.

https://www.politico.com/news/2023/01/09/doctors-test-results-patients-00076843

I realize it may be difficult for some people to get the bad news from a computer screen, and others may not understand what they are reading there. But I want access to my results immediately and at this point in my medical treatment, I am able to understand what I see in my records. I have a choice - if I feel like I can't handle looking at my scan results, I just don't look and I wait for my appointment with the doctor. Also, having changed clinics a few times now, it was extremely convenient to be able to print out the records my new doctors needed to get treatment started and not have to wait for faxes, mails or even emails.

I would not want to lose the access we have gained to our records.

I'm wondering how other people feel about this.

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Comments

  • kaynotrealname
    kaynotrealname Member Posts: 343

    Pros and cons quite honestly. I don't want to see immediate release anymore. Maybe release within 48 hours of receiving results which gives a doctor time to call a patient and discuss the results personally first. We live in a society where emotional stress has increased so dramatically within the last few years that we don't have enough therapists available to treat. And when you add in those of us who suffer from medical issues, who are trying to navigate the medical field and understand their results without having a medical license, that stress can be so much that it actually causes physical problems. Luckily my doctors have been super quick in calling me when my diagnosis results have come in. But not everybody has been so lucky and it's heartbreaking to read when someone finds out something bad reading a cold clinical report instead of hearing it from someone who can parse out the details first in a way that causes the least emotional stress as possible. The UK doesn't have such rules and some people over there never actually see any of their results in written format. They still have excellent treatment once it gets started (the delays over there right now IMO are inexcusable but that's another subject matter entirely). So seeing your results right away does nothing to aid your proper treatment statistically speaking. It just can cause an inordinate amount of stress and anguish.

  • weninwi
    weninwi Member Posts: 737

    I want to have my test results posted as soon as they are available. Then I decide when to look at them. Sometimes I wait to look until after my doctor has posted a comment or I wait until shortly before I will be seeing my doctor, so I don't over stress about something I can't change or do anything about. Sometimes I look right away so I can do some basic research and get prepared with questions for an upcoming appointment. I would not want this access to test results ended. I agree with the patient advocate position.

  • tina2
    tina2 Member Posts: 753

    I want test results in my portal ASAP. If some patients don't, they can simply wait. Simple.

    To piggyback on Olma's statement, I have lived in Cancerland long enough to be able to comprehend reports from scans and other exams. I am not willing to wait for my next appointment or whenever a medical professional sees fit to notify me of information which is rightfully mine.

    And I will fight to retain that right.

    Tina

  • olma61
    olma61 Member Posts: 1,014

    The end of that article seemed to allude to having the electronic records companies code in a switch where “someone” , hopefully we the patients, can choose whether or not to see immediate test results. I hope that decision is left up to us, I don’t want the control given back to the doctors.

    PS, I have also found errors in the progress notes that I was able to get corrected by notifying the provider. This is important, too, that we be able to check for accuracy

  • kotchaj
    kotchaj Member Posts: 205

    I worked in the health care field for 15 years as a patient advocate and want access immediately to my results. It is then up to me if I want to look at them or not. I've found that our clinicians aren't always the best at getting back to us with results immediately no matter how much they want to. They are bogged down and sometimes it doesn't happen. I've spent enough time in the clinical world to be able to understand what I read or have someone who is an expert in the field to explain it if needed. I really don't want them to change this back. I'd rather the choice be with the patient to look or not.

    Especially now that I am in the Cancerland world myself as a patient. I feel that there are so many things that we are told we have choices in, that we really don't have. I don't want anything taken away that I feel is my choice to do.

  • sf-cakes
    sf-cakes Member Posts: 502

    Great topic! Here's my most recent experience with the scan results appearing automatically in my online patient portal:

    Bone scan result arrived same day as my scan, said there was an increase in uptake on my T9 vertebrate, "suggestive of metastatic progression". I sat with that for two days before the CT scan result arrived, which said there was a mild compression fracture in the T9, and increased sclerotic activity, hence the increased uptake. NOT more cancer. Which my doctor confirmed when we spoke on the phone. So, you know, that sucked and was highly stressful, and happened just a few weeks after my husband died. Grateful that at least I can grieve him now without trying a new treatment with new side effects, etc.

    But I do support full access to our medical records, just would personally like the patient option to endorse "please wait until all the scan results are in". I suspect that will be too complicated, though.

  • alicebastable
    alicebastable Member Posts: 1,932

    On MyChart, theres a warning right before you open results, that if you want to wait for your doctor to tell you the results, don't open it. It's that simple. Nobody is forcing the patient to look at the result. I look at them right away so I know what questions to ask. I get a CT scan right before one of my appointments, and I look at the results in the parking garage or waiting room before I see him. It's also a way to make sure the doctor doesn't ignore something or keep it from you. I also have enough other weird things in my body that I can ask my PCP about the things that show up in scans ordered by other doctors that don't pertain to what I got the scan for (ugh, ungrammatical and convoluted, but I hope you know what I meant). The whole idea of not releasing the information to patients sounds like a giant step back to when doctors expected to be put on pedestals and only they could explain anything.

  • ctmbsikia
    ctmbsikia Member Posts: 749

    I am a portal stalker. I can imagine though for someone never having cancer or a certain type test, reading the report without hearing from the doc or nurse could be quite daunting.

  • sondraf
    sondraf Member Posts: 1,541

    I noted elsewhere that Im excited my system will FINALLY be getting a proper patient portal where I can see all of my results and notes, etc (but apparently not scans) and to be able to contact my team via the portal. I have a stack of actual paper letters about three inches thick of all the correspondence received since diagnosis, from however many hospital trusts I passed through. Its stupid and I dont want to port those around (except for the one confirming my diagnosis, which I saw before meeting with a doctor or having any chance to contact anyone because it arrived in the mail before the appointment letter. That was... grim).

    I can see where some people not used to being ill, or are just passing through Cancerland, may not have as much need, but for us permanent residents, its crucial that I have awareness so I can be another set of eyes and a brain and come prepared to a discussion. I firmly believe that being an informed, engaged patient is part of living with this disease, and I can only be that if I can have the info to hand.

    That being said, I like looking at scans with my MO, so even if they could ever turn around a scan read that fast, I would probably wait to view and discuss.

  • tarheelmichelle
    tarheelmichelle Member Posts: 248

    It seems like most of you who have responded are sensible about reading scan results before appointments But not everyone is sensible. If patients had the restraint to wait to see their results, they would already be doing so. I don't see doctors wanting this change for any nefarious reason; impatient patients are the cause. I’m a member of enough online BC discussion groups to see how often patients panic over their scan results, before seeing the oncologist. I don’t blame doctors for wanting this change. Doctor offices are inundated with phone calls from patients who simply CAN’T wait two days until their appointment; they need to speak to the doctor RIGHT NOW. Nervous patients ask online for treatment advice, from people who are not oncologists. These patients spread toxic gloom and anxiety in online patient forums. I sympathize with scanxiety. I don’t sympathize with patients who expect their doctors to be instantly availabl, along with their instant scan results.

  • maggie15
    maggie15 Member Posts: 754

    My diagnosis happened several months before this law went into effect. I found out that my mammogram was suspicious when the imaging department phoned me three weeks later asking why I had not called to schedule my biopsy. I assumed that my biopsy was positive when one and a half weeks after that an appointment with a general surgeon popped up in my patient portal. Both times when I called my PCP's office I was told they would not release the results because my doctor had not signed off on them yet. I assume this happened because my PCP had written in my notes that a yearly mammogram was not needed and I had self-scheduled one on the advice of my oral surgeon. He was treating me for osteomyelitis of the jawbone which would not heal and was convinced I had some kind of cancer after a bone biopsy showed infection but no malignancy, a CT of the head showed only inflammation, and an HIV test was negative. I had to appear in person at the patient coordinator's office and pitch a fit to get a copy of my biopsy pathology. Thankfully my PCP who never communicated with me again retired soon after. Needless to say I travel 100 miles to a larger hospital for treatment.

    This is the very reason test results are released as soon as they are finalized. Opening them is optional, but your have no option of knowing your health status if you have to rely on an unreliable healthcare provider or records system. I'm fine with the policy of telling patients they will have to wait until their appointment to discuss their results with the doctor.

  • alicebastable
    alicebastable Member Posts: 1,932

    Then what needs to be implemented is a button on the portals that can be activated by the doctors WITH THE PATIENTS' CONSENT, to allow or not allow the patient to see it. Personally, I'd prefer to make that decision without my doctor, but it seems we're expected to defer to people with no will power who then freak out. I'm sorry if that's harsh, but I had an oncological surgeon in 2008 who did my hysterectomy, and he was a patronizing, infantalizing, paternalistic SOB who didn't think women should have medical information. His answer to questions was "There, there, I have cured you!" There are still doctors like that, and we, the patients, have every right to have access to OUR medical information.

  • nopink2019
    nopink2019 Member Posts: 384

    tarheel - I get your point, but I'm glad I can get my results when I want them. I feel that in the past many Drs brushed off results that might have been ancillary to the purpose of the scan. So many times, Dr read report, then just said "nothing to worry about..." and wouldn't/couldn't explain results in language patient could understand. I don't understand everything in the report, but at least I can read it before getting a 2 minute explanation, if I care to. Yes, Drs are swamped, but they now that we've seen what the reports are, questions are likely to be more precise than in the past when it was hidden from the patient. My portal also cautions that I am CHOOSING to read results, possibly before the Dr has had a chance to read them.
  • ratherbesailing
    ratherbesailing Member Posts: 115

    Great topic. I love having results immediately because, as others have said, it often help me prepare for appointments.

    But, as tarheel points out, patients often panic on reading their results. And surveys are showing that one of the greatest stressors for physicians right now is the overwhelming number of messages from patients on portals. It is at the point where some hospitals are considering instituting patient fees for portal messages. So that may be one reason why medical personnel are pushing for a change.

    And one physician offered me this perspective when I asked about the subject: he said that sometimes tests and scans show unexpected, bad results completely unrelated to the condition being tested for. He told me that before speaking with the patient he wants to reach out to specialists, organize, and have a plan in place. I can certainly understand that perspective. But I'd still vote for keeping immediate access.

  • alicebastable
    alicebastable Member Posts: 1,932

    When I was going through pre-op testing, my MO scheduled a no-contrast chest CT, which she prefers to x-rays. My lungs were fine, but the scan showed an aortic aneurysm and a good-sized kidney cancer. Luckily she told me, and had her nurse literally take me by the hand and down the hall to a urologist's office and set up an appointment for me. If she'd left those for my PCP to find, I have no idea if I'd still know, almost five years later. When I made an appointment with my PCP several months after my surgeries to ask about the aneurysm, she practically had a cow when she opened my records while I was in the room. She had not read any of the emails or reports from the BS, the MO, the RO, or the urologist, and wouldn't have without me being there. Of course I fired her, but it taught me to NEVER assume the doctors are in the communications loop or that they look at test results without a cattle prod administered by the patient.

  • seeq
    seeq Member Posts: 1,060

    I absolutely want immediate access to my lab and imaging results. I recently had this discussion with my new MO after a 2 week delay in releasing results was not specifically at his request, but as a result of standard practices. The waiting, in itself, was stressful. I never liked the "no news is good news" approach with any test results, even routine annual pap smears. Some times "no news" is the result of oversight or incompetence.

    I always make sure I'm in a mental space to deal with bad news before looking. I understand there are people who don't want immediate results, and besides the obvious but potentially difficult solution of "then, don't look" the patient should have the option to request NOT having immediate access.

    Doctors already have the ability to delay release if it could cause physical or emotional harm. This makes the most sense for initial diagnoses. And, wouldn't it be nice if the radiologists could flag certain reports recommending additional review (initial findings, potential progression, and the like).

    Its a new law, so we're in new territory. It may take a bit for the technological solutions, but it's these growing pains that will drive the them.

    --------------

    ETA- The last post makes my point exactly about why 'no news is good news' is a crappy approach in this situation.

  • olma61
    olma61 Member Posts: 1,014

    With all the money our insurances (and we) pay for cancer treatment, I would think cancer centers could come up with some way of fielding calls and messages without treating all of us like children. Cant the staff refer anxious patients to the social work department? And I say staff because its never the doctor who answers portal messages or the phone? I get messages back from the NP or nurses never the doctor

  • candy-678
    candy-678 Member Posts: 4,073

    I want access to MY records. MY body. MY records. If you cannot handle reading the report, then don't read it.

  • dancemom
    dancemom Member Posts: 404

    I was under the impression that the tests aren't posted until read and signed off on by a doctor in that specific field. In my case, I saw all the mammo and sono results immediately, but the biopsy that gave me the initial diagnosis was not released until after my Primary called to tell me personally first. I said I didn't see the results yet and he told me it's because it hadn't been released yet. So maybe it takes good communications between a patient's teams to find a good balance; all the info is released, but a human can discuss negative results first and help explain next steps calmly.

  • maggiehopley
    maggiehopley Member Posts: 95

    I absolutely want access to my test results as soon as they are available, and I don't want people who feel differently to think they have the right to take that away from me. If you don't want to see your results, you don't have to look. I need time to read, process, and research my results before I see the doctor, so we can have an intelligent and unemotional dialog. I don't want to be managing my tears and fears in the office while my doctor is trying to explain results; that puts me in a position where I am less able to absorb information. My doctor has hundreds of patients- she doesn't have the time to pick up the phone for everyone's test results, and who wants to get a "bad news" phone call while you are at work or at your kids soccer game? How awful!

  • alicebastable
    alicebastable Member Posts: 1,932

    The law changed at some point after my surgeries. I remember getting a phone call from my BS, I think to confirm the biopsy and schedule my surgery, when I was in a state park a couple hours away from home. I told her that cancer was no reason to stop having fun, and I've stuck with that. She loved it. My husband was with me in the MO's office when she told me the results of the chest CT that showed kidney cancer and an aneurysm; I was fine, but Hubby was moaning and muttering like i was expiring on the spot, and I had to give him a sharp elbow to the stomach and a snarled "Shaddup!" so I could hear what the doctor was saying. Getting the results through the portal means I can tell him in wording that won't freak him out, even if I'm spoon feeding it a little at a time at first.

    I'm wondering if there is a political push behind this, since a certain faction does not believe in patient (especially female) autonomy, and the timing is mighty suspicious. It would not surprise me in the least.

  • maggie15
    maggie15 Member Posts: 754

    Doctors, with justification, are complaining about the extra work generated by patient portals but they often save time. My PCP can type a comment on a test result like "ferritin level low, take a second iron tablet every other day" or "kidney function stable" rather than phoning (or having a nurse call.) There could be two types of message center set up in the portal. One would be initiated only by the provider and answered by the patient like "Has your cough improved yet?" The other which could be initiated by the patient would give non-urgent medical advice and be billed as has been proposed. There are separate functions to ask for prescription refills or appointments.

    Even now patients are advised to call the office for urgent questions. Whoever answers the phone determines whether the patient should speak with a nurse who can evaluate the situation and respond appropriately. This is more time consuming for the patient since there is usually a hold time involved but it frees up the doctor's time and cuts down on unnecessary interactions. For callers who don't really need immediate medical advice the telephone staff can schedule an appointment or direct the call to the appropriate place.

    This aspect of the patient portal is entirely different from the release of test results and can be dealt with separately. While I want the immediate release of results I could understand a case being made for release after 48 business hours whether or not a physician signs off. Doctors would have time to contact patients with upsetting results but they wouldn't be able to indefinitely sit on information a patient has the right to know.

  • kaynotrealname
    kaynotrealname Member Posts: 343

    "...I could understand a case being made for release after 48 business hours whether or not a physician signs off. Doctors would have time to contact patients with upsetting results but they wouldn't be able to indefinitely sit on information a patient has the right to know."

    I want to see all my reports hand down. My oncologist isn't going to necessarily pour over my blood test results comparing and contrasting the many report looking for patterns and thus ways to optimize my health. But I will and I want access to them as a result. However, I think a 48 hour wait time isn't a horrible thing to have. For instance after my double mastectomy I asked my surgeon if I was going to hear my pathology results from her before she posted them. Because that's what I desperately wanted and needed. She said she would do everything possible to talk to me first but sometimes by law they have to post them before they have time to call their patients. Luckily she managed to call me first and from there I poured over my results on-line free from unnecessary fear. I just think we should give doctors more time to call so that as many people as possible who would prefer to speak to them first have the chance to.

  • mountainmia
    mountainmia Member Posts: 857

    Well perhaps that (delayed release) could be an option. If you prefer to have results delayed, either as the default or for a specific test, you should be able to opt for that on the portal. You could pick your own date, perhaps. Maybe you're on vacation or attending a family event or whatever it might be, and you don't want results to distract you until a week from Sunday. So choose that.

    I, on the other hand, would prefer to have them available to me when they are ready. And I should have that choice, too.

    As it stands, we all don't get our own preference. But I think that would be the ideal.

  • seeq
    seeq Member Posts: 1,060

    Some of what I'm hearing is about unexpected bad results, which is completely different than health anxiety. Doctors have the narrow exception to delay results (say, to prevent mental anguish in those initial cases).

    I also believe that if you don't want to see the results before you see your doctor the obvious solution is "don't look". But, since we also seem to be discussing people with known health anxiety, who are unable, or unwilling, to abstain from reviewing results the moment they are available, having the ability to "opt-out" seems like a reasonable solution. There's still some personal accountability there - to actually opt out. Without discounting people's health anxiety, I don't want their challenges to restrict my right to prompt access to my health data.

    I believe portals were established to reduce routine types of phone calls to the doctor's offices and keep their staff available to focus on patients in the office. It's an excellent method for non-urgent communication, and also benefits the patient who can wait 24-48 hours for a response. There should not be a charge for this type of communication.

    It is reasonable for doctors to establish policy that while results may be available to the patient immediately, the doctor is available to discuss those results at the scheduled appointment. Setting the correct expectation could/should reduce the problematic "I must be seen right now!" calls.

    My point is I don't think this has to be an either/or situation. I think the solution can be found in a combination of compassion and common sense.


  • I believe in compromise. I see little harm in delayed release, allowing the doctor access for 24-48 hours, then releasing them automatically to a portal. This allows the doctors an opportunity to review the results and affords the medical staff the opportunity to treatment plan, make referrals, and communicate with the patient directly if needed.

  • simone60
    simone60 Member Posts: 952

    I am so happy that I get my results the same day prior to my appointment with the Oncologist. This gives me the opportunity to review the results, do some research, and ask questions in my appointment. I do not want this to change.

  • cyathea
    cyathea Member Posts: 321

    I don’t want this to change. I love getting my results as fast as possible. I have enough education and experience to digest the results. This gives me time to adjust to any bad news and discuss my situation with a cool head when I talk to my doctor.

    I got my biopsy results before I talked to the doctor. When I spoke with the nurse, she apologized that I got the news that way, but I assured her that I felt this was a huge benefit to me. For people like me, taking this away is going backward.

    Being an IT person, this is a situation that can easily be handled by those who have developed the portals. They can simply give patients with health anxiety the option to “opt out” of the immediate release of the records or specify their desired delay before getting the results

  • sadiesservant
    sadiesservant Member Posts: 1,875

    Interesting discussion. I also want immediate access to my test results but here in Canada I can’t see my scan results until a week after they are reported. Bloodwork I can see within hours but scans, I must wait. Drives me nuts as I would prefer to be prepared when I speak to my MO. (I do want to say that I have an excellent MO who lets me know the results as soon as he has them. I’m fortunate.)

    A recent example strengthens the argument for quick access. I was in Emergency with potential problems following a urinary stent insertion. The wait was horrendous and I was seriously considering bailing but decided to look at my blood test in my patient portal. Kidney function had dropped well below normal so it was clear I wasn’t going anywhere. Spent five days in hospital with declining kidney function until they put nephrostomy tubes in. I could have been in serious trouble without that information that allowed me to make thatinformed decision.

  • margaritams
    margaritams Member Posts: 183

    I am in favor of my health information being available immediately in the portal. My diagnosis occurred well before this was the standard practice. I had to wait days to receive the phone call from my busy oncologist with scan results. One time, the NP kindly phoned me up on a Friday night just after a scan to inform me that my results were in and they looked good. She said she didn't want me to have to worry over the weekend but then she also warned that in the future, if I don't receive a phone call right away, I should not assume it is bad news as she or the doctor might not always be able to call me immediately. So, the process of waiting for doctors to phone up with test results is also potentially problematic and causes its own form of anxiety.

    Also, have you ever missed a call from your doctor only to call back and have to go through the phone reception service? First you listen to the recorded message informing you that if your call is an emergency call 911. Then the message about covid protocol in the clinic, then it's a series of "press one if you are a new patient" "press 2 if you are a provider" "press 3 if you are calling to cancel or change an existing appointment" blah blah blah. Then it says "you are caller number whatever ... 8 ... your estimated wait time is ... ie 11 minutes" Finally, you get a human and they ask you for your name, birthdate and the reason for your call before they finally say, I will ask the doctor to call you. Meanwhile your telling them, "no, she just called me like minutes ago but I missed the call..." OMG, the portal is so much faster and more efficient. I can choose to look at my results when I am alone, quiet and ready to receive the news. I can send my medical team questions and they can respond when they have time. Then I can share info with my family as and when I'M ready. Notwithstanding the new hassles that the portal may impose the medical staff, I have to believe it is ultimately more efficient for them too. I hope we don't go backwards.