Doctors Against Patients Having Direct Access To Test Results

from the too-much-information-access-makes-the-gatekeepers-angry dept

The title of this article is a tad melodramatic, claiming “Big Brother doctors say patients don’t need to see their imaging test results,” but the conclusion from a study of a small sample set of radiologists and referring physicians is that these medical professionals are against empowering their patients with their own information.

This isn’t too surprising knowing that the entire healthcare system is wrought with ill-conceived ideas against efficient and ready access to patient health records.

Physicians with a "Big Brother" mindset apparently think people having imaging tests are incapable of dealing with the outcomes without suffering from so much anxiety they must be protected from seeing the results.

It’s not clear exactly that this attitude is akin to an Orwellian state, rather than simply an elitist mindset.  Many "experts" feel that people outside of their field have no business reviewing their work (look at the commenters on Techdirt who claim others should not comment on music/patents/laws/newspapers if they aren’t a musician/inventor/lawyer/journalist).

The attitude of these physicians is just one reason of a whole host as to why the healthcare system is one of the last industries holding out against the IT revolution.  The argument that patients will freak out being exposed to the core information that leads to diagnoses is ridiculous.  If someone is going to be overly anxious, it isn’t because they have information; they’ll be anxious because they have symptoms and a diagnosis, but little-to-no information.  They’ll be anxious because the medical industry is unwilling to have a two-way conversation with the patient themselves.

There are many examples of this elitism when it comes to sourcing and analysis of information. Why is it that experts fail to recognize that more points of view have a greater opportunity for catching errors and bringing different perspectives to the forefront?  In addition, bringing the patients into the conversation gets them involved in their own health stories, leading to many long term benefits and ultimately lower healthcare costs.  But maybe this is another one of the reasons the healthcare industry is unwilling to change?

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Comments on “Doctors Against Patients Having Direct Access To Test Results”

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Chunky Vomit says:

Over the last few years, I have been working full time in a medical office. These are my thoughts on the subject:

1. I don’t object to people having copies of their records. We can’t just give everything away because the law doesn’t allow it. But I have no objections with copies.

2. If you come into our clinic, we will give you copies of your records.

3. People who try to make their own diagnosis with their test results and records are almost always wrong. Sometimes this results in death. Many times it results in a patient being far worse off than had they listened to us in the first place. Self diagnosis and treatment is a bad idea.

4. Number three isn’t as bad of a problem if the patient seeks a second opinion from another qualified medical professional.

So there you have it! Sure, take your medical records, use them as you see fit. As with anything, there is a risk involved. In my opinion, if you don’t trust your doctor, you probably shouldn’t have gone there in the first place.

Coasty (profile) says:

Re: Re:

Your comment is pretty much spot on, except for “if you don’t trust your doctor, you probably shouldn’t have gone there in the first place”.

That comment is forgetting that for a great many people, economics and/or their HMO’s dictate that control over which doctor they see can, and frequently does, vary from minimal to totally outside of their control.

This TechDirt article does lightly touch upon something that is frequently quite aggravating, namely doctors that have a range of attitude from a “poor bedside manner” to downright “need their ass kicked” arrogant jerks. By my experience, sad to say, the field as a whole suffers from a rather high proportion of undeserved self-inflated egos.

This is one of the reasons why over the last 40-50 years, for many people, the medical profession as a whole has lost the automatic respect it once had. Over the last forty years or so I’ve talked with more than a few people who rate doctors on about the same level as mechanics, only better paid. That pretty much illustrates the level of respect to which the profession has now sunk, and the profession has only itself to blame. On the brighter side, it does seem that at least some parts of the profession have recognized this situation and, at least minimally, are beginning to consider how to remedy it.

wifezilla (profile) says:

For every case of a person diagnosing themselves incorrectly there is a case of a person who got a wrong professional diagnosis and then saved themselves by their own accord. From telling woman to learn to live with cramps when she actually has uterine cancer to the person who “migraines” turn out to be a tumor to obese people who are told they are weak when they have serious thyroid issues, doctors make mistakes.

The patient has the right to examine their information and the chance to catch errors. If I pay a doctor to examine me the result of tests I pay for are mine.

Would you go to a mechanic that charged you for a diagnostic on your car but then wouldn’t tell you the results because you might get upset or disagree with your findings?

Anonymous Coward says:

Re: Re:

For every case of a person diagnosing themselves incorrectly there is a case of a person who got a wrong professional diagnosis and then saved themselves by their own accord.

Really, the ratio is 1:1? Do you have data to back that up, or is that just something you pulled out of your ass? Doesn’t it make a difference if the ratio is actually 10:1? 100:1?

The patient has the right to examine their information and the chance to catch errors.

Who’s disputing this? Not the doctors in the original study. The summary of their opinion was that they “thought that patients should have access to personal health information and take responsibility for their own health care.”

Sos says:

Re: Re:

“Would you go to a mechanic that charged you for a diagnostic on your car but then wouldn’t tell you the results because you might get upset or disagree with your findings?”

Its not about the doctor telling you your result, its about getting direct access to the results.

Sure you can have a copy of the dyno graph that plots HP and AFR vs RPM but you will not understand it unless you have been trained how to.

Anonymous Coward says:

the conclusion from a study of a small sample set of radiologists and referring physicians is that these medical professionals are against empowering their patients with their own information.

At what point have you dumbed something down enough that it’s not really “true” anymore, or even an outright lie?

From the abstract of the actual study writeup:

“Both radiologists and referring physicians (RPs) were aware that patients are not satisfied with the current system for notification of radiologic test results, and both thought that patients should have access to personal health information and take responsibility for their own health care.”

Oh look, the primary source says the exact OPPOSITE of the Techdirt summary above.

The Techdirt summary echoes a position espoused by its own source article, which isn’t the study itself or any primary source, but rather an opinion piece put out by (I’m sure they have no agenda whatsoever). The opinion is derived from some caveats in the original study:

“Regarding direct patient online access to results, both radiologists and RPs were concerned that patients would not understand report contents and that such access would lead to greater patient anxiety and demands on RPs’ time. Referring physicians were also concerned that direct patient access to results would cause RPs to lose some control in the patient-physician relationship. Both radiologists and RPs preferred that any system for direct patient access incorporate a time delay and be tested for effect before being implemented. CONCLUSIONS: Revisions attempting to increase the patient-centeredness of care in the area of radiology reporting should be developed and tested to 1) minimize adverse effects on patient anxiety; 2) optimize timing, considering effects on both patients and RPs; and 3) simultaneously address problems with between-physician reporting methods.”

What it looks like the physicians actually said was “we don’t know what the overall effect of suddenly giving patients unfettered access to radiological data would be, so rather than just do it, we think you should actually study the problem, and maybe implement a few controls to make it more gradual.”

God forbid you make sure that patients have enough access to doctors to help them interpret complex results. Let’s make sure that we do absolutely nothing to minimize the possibility that some patients may have increased anxiety.

Luckily, anyone who wants can now get REAL medical advice from people who actually know what they’re talking about, and none of those elitist “doctors” that use “evidence” to treat disease.

Anonymous Coward says:

Re: Re:

This article didn’t smell right and I am glad you cleared it up so I didn’t have to pursue it. I am a health care provider and I am absolutely glad to share test/imaging results with a patient but only after I have had time to review them myself. It is my job to interpret what those results mean to this patient based on their circumstances.
Why did workers comp claims go crazy during the 80’s for disc herniations???? Was it because:
A. Everyone started using poor lifting habits
B. Shoulders pads were too big
C. MRI use became common

It turns out that a portion of the population had asymptomatic disc herniations and no one bothered to determine whether or not this had anything to do with the patients condition. It is the doctors job to correlate the exam findings with test results to determine the patients actual diagnosis. If you use the tests/imaging alone, you may not have a complete understanding of the problem.

There is also a saying (which I have found to be true) “He who holds the ‘xray’ holds the patient. Ask any doctor and they will tell you that the patient tends to have more trust in the physician that has/ordered the imaging.

Anonymous Coward says:

Re: Re:

Nothing you said really contradicts what Mike said, it’s just that Mike seems to have a different opinion on what was said than you do. I, for one, agree with Mikes opinion more than yours. Patients absolutely should be given direct, unfettered access to the very test results they paid for and anything less is unacceptable.

JackOfShadows (profile) says:

Re: From a terminal, service connected, disabled Vet

The study, sadly all too typical today, is for crap. You will always find a measurable, usually statistically significant (non-normative) difference between what anthropologists (and better psychologists or sociologists) call out-group and in-group members while using non-parametric statistical methods. They did a piss-poor job of experimental design here and I should know: I’ve been teaching statistics, applied maths, and computer science at the UC (University of California) level since the tender age of 13. Working professionally as a consultant since the age of 14. I won’t (can’t really) say for who as they would have some serious red on their face despite the fact that the model used has saved them more than a few billion. Dollars, that is. And I’m dead serious about it. Best $25,000 or so they’ve ever spent.

O.k. That out of the way, I can speak anecdotally. Short answer, the US Navy and VA Hospital system have killed one of there rather better employees.

1984, on-board my vessel (a US Navy destroyer) in the graving dock I’m on watch as the roving (armed security) patrol. Bend down to retie my (favorite) paratrooper boots and as I stand up I get hit hard on the top rear of my hard hat and unprotected neck. I go down, paralyzed. Six hours later, three of it paralyzed, I’m discharged bandaged up, a bunch of codeines issued, and oh, a light duty chit. The only thing that I was told is that I shouldn’t mix alcohol with them. I have to make my own way back from the hospital and for fun, have to do it in a uniform that is most definitely not EVER worn off base. NAVY (say like F*** and you have it down pat!

1984-1987 report having catatonic seizures, and they really are catatonic as in appear for all intensive purposes dead, loss of feeling in arms, neck and upper back pain. Given tylenol and sent off on my merry weigh (pun intended). Transferred through three commands and all three Naval facilities got to know me as I couldn’t complete the physical fitness test which is mandatory. I was waved through since I was a “golden-goose”. Admiral’s and Captain’s careers saved, beta-tests completed, tons of ROI. Whatever. I just love engineering.

1988 Deferral not forever so sent back to Balboa Naval Hospital (my birthplace) where an EMG (electro-myelogram) was done. LCDR who did the test said I was the first person who did the test that did not scream. Only evaluation he had. No conductivity problems in arms to the spine. [Should have been first red-flag, loss of feeling but problem not in arms.]

1991 Tossed out in the street with some severance pay ($38K) plus $8.1K college fund so I went back home to UC Riverside.

1991-1995 Ate my way through economics, mathematical computing, modeling, experimental design, and techniques courses on the menu there. After US NAVY Nuclear Power Program, college is a joke, grad school (first year already done, too) a walk in the park, and Ph. D. level stimulating. Continue to report problems.

1996-2000. Have to drop out pain so bad I’m in treatment program but they refuse to treat the pain. Finally they do a bone-scan and then after a negative result, an MRI is ordered in 1997. I’m given the neutral result of cervical bone spurs with spinal cord impingement and encroachment. Other than medication eating three holes in my GI tract, nada.

March, 2001, diagnosed inoperable and terminal by best guy on the west coast. Might of taken it back in ’97 but still hazardous. Now I just wait. To die.

There are a long list of errors in there. Hubris on the part of “the Docs” is and diagnosticians sure on the list. I am most definitely not your typical patient and take mere minutes to get up to speed on most things as either it is part and partial of something I picked up elsewhere or just a specialized approach. I was born, or somehow learned along the way that all human knowledge is of a piece. With the notable exception of the space program, I have been involved in every area of human knowledge. Period. Even medical research where I validated the experimental design, methods used, statistical controls, and was general nice guy to the poor bunnies. The subject was MRSA, the time was 1998. That’s why we can manage it (there is a treatment protocol and we were out looking for it. Still, I miss Thumper. Nothing in medicine took me more than a few minutes. A Few Minutes. To Learn. And Do. Even Improve.

I simply can’t comprehend this need for an in-group/out-group distinction. I think it is (y)our need to keep others out, to preserve our self-distinction, blatant discrimination (formally exoist) against others. I can’t. I don’t seem to be equipped with/for it. Perhaps it’s my autism (and yes, I was full-blown before somehow snapping out of it). How hard would it have been to simply discuss my case with me along the way? I’m extremely verbal, mostly socially, and usually not too scruffily, presentable if you can handle the intellectual arrogance.

Let me read my records and diagnostic reports? Speaking in an electrician’s terms, if the signal is lost between hand and brain and signal is good from hand to spine, WTF does that tell you??!! I’m a fragging nuclear/electronic/ electrical/network/computer/database/process … engineer & analyst! I don’t even need to think of the next test to do! You have a process/culture problem here. I can recommend a really good Anthropologist to start working on you cultural problem. Sheesh, how many people have to die before you actually realize that the person on the other side of that record is a PERSON.

Sorry. This just shouldn’t be. And I am not talking about my case.

Brian J. Bartlett, ex-ET1, USN.
[Insert job here]

wifezilla (profile) says:

“The Institute of Medicine (IOM) reports on two studies estimating the hospital deaths due to medical errors at 44,000 to 98,000 annually, which would place medical errors in the top ten causes of death in the USA. Barbara Starfield’s article in JAMA places the estimates even higher, citing a total of 225,000 deaths due to iatrogenic causes, which would place health-caused deaths as the 3rd leading cause of death in the USA. Holland et al (1997) estimates as many as 1 million patients are injured while in the hospital and approximately 180,000 die as a result, with the majority due to medication adverse reactions.”

Take it for what it’s worth.

OneNemesis (profile) says:

1974–My wife and I found out that we were having a baby. We went Dr. hunting. One of the first questions we asked was “How about the husband in the delivery room?” (This was quite new at the time) Some docs were for it some were not and some would say its okay but there isn’t really any room in the changing area. (you see, mothers-to-be were still moved into a surgical suite for deliveries)

Well I guess more and more parents-to-be started demanding that the father be present. Look now–the hospital room you are in is the delivery room and you can have almost anyone you want in the room.

What really decided the issue is that we started going to those doctors and hospitals that supported fathers in the delivery room. Other doctors and hospitals started losing business (read MONEY). Wasn’t too long till they all woke up.

It is the same with this–stop supporting the “bad” ones and only go to the doctors that are open with you. Even HMOs have a choice of doctors try hard enough and you will find one that meets your needs.

Jimr (profile) says:

I wish the doctor gave a copy of the results of all the test. Most people could not make heads or tales from the results and the doctor might have to actually explain and answer the patients results to them – the horror of actually doing some work.
I wish my mom’s doctor gave her a copy of the cancer test results as soon as he had them. After mom got worse and after countless requests it took a legal threat for the doctor to produce the cancer test results. The doctor claimed the cancer was not that significant and mom should wait on treatment – maybe next summer. The actual test results, which he had signed indicating he received the results the next day, tell a different story. One quick Google search on the type of cancer and every site indicated it was a very aggressive cancer and dramatic treatment needed to be done as soon as it was detected. Only after WE told the doctor how bad the cancer was did he reluctantly refer treatment – atlas it was too late as small spec of cancer had already spread to every organ and brain. Stupid arrogant doctor!

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