Should there be a law requiring patients to receive copies of their test results?

in Uncategorized | 22 responses

There is legislation pending in Pennsylvania that would make it a law for patients to receive actual copies of their test reports.

I don’t have much of a problem with that, as patients certainly have a right to the information. However, it may be difficult for patients not versed in medical language to discern incidental findings from results that require more immediate attention.

Doctors can certainly do a better job in communicating test results. I’m not sure handing patients the raw test data, which without physician interpretation may lead to increased anxiety over findings that aren’t necessarily dangerous, is the best way to do that.

topics: tests, patients

Comments

KipEsquire
Q: Hi, are you accepting new patients?
A: Yes we are.
Q: Great! And do you provide complimentary copies of all test results?
A: No we don’t.
Q: Oh. Kthxbye. {Click}
Why is every policy discussion always predicated on the presumption that consumers are impotent dolts?
Anonymous
We deal with this everyday in our office and it is a major consideration as we look to adding an internet portal for patients.
Raw lab data typically contains about 5% “abnormal” but clinically insignificant results. If we were required to report raw data to patients, it would generate a significant number of phone calls each day about meaningless “abnormal” results would add even more unpaid work to our already long days. Alternatively, we can bring patients in to discuss these results at an appointment (where we get paid and avoid the inevitable rounds of phone tag). This would worsen access for patients and drive up costs to the system overall.
Sending a summary of the results in plain language with only a few specific lab values reported (such as lipids) works much better.
If patients or governments insist on reporting all of the numbers, they need to realize that this incurs a significant cost for little or no benefit.
Chuck Brooks
Looks like a roundabout way to encourage online medical information services, and an opportunity to generate more income with very little incremental cost. Auto dealers took advantage of this when the ‘digital error codes’ became openly available.
Chuck Brooks
FutureWare SCG
Van
Well,
Let’s look at it this way…
A fair number of individuals will go out to WebMD in order to perform a self diagnosis, then go into the Dr. with what they believe the issue to be.
That has the ability to create/increase anxiety in the same manner, no?
I have no problem with the raw records in the hands of the patients, it is their information they should have access to it (anxiety aside) but his/her Dr. needs to review the records with the patient before releasing.
Best,
Van
http://vansantos.com
Anonymous
Oh, get over yourself.
First, physicians may set a policy suiting their own practice for follow-ups on abnormal results. If you choose not to take questions over the phone as a rule, or if you have a policy of always following up by phone after tests, you can keep your habits intact.
Second, in most cases where bloodwork is outsourced to a testing laboratory abnormal laboratory findings are often keyed with information – ostensibly for benefit of the treating physician – for potential signifigance.
Third, patients should know why tests are being done, and what you are looking for before you even do the tests, and should have at least some vague idea of the meaning of abnormal results.
Fourth, patients, in cases where the tests are simply routine or screens, they have access to many legitimate sources of information which describe the range of significance attributable to high or low values.
Fifth, physicians sometimes deliberately withold lab results to force a situation where they will be compensated for a second visit, a visit that a patient would prefer to seek with a new physician, or which is not really required, especially when results are negative. Or worse, physicians like to keep patients out of the loop because they don’t want patients participating in their own care.
Sixth, disorganized or simply very busy offices may fail to follow up on abnormal findings or misinterpret their significance. A patient is always the most intimately interested party and has a right to know what is and isn’t being overlooked.
Supremacy Claus
There should be a moratorium on laws bossing clinical care, the most over-regulated profession in the nation.
Anonymous
To 9:58: I couldn’t disagree more. I shouldn’t have to wait for a follow-up visit or phone call to see my own, test results, which I have paid for and which concern me directly, and which should be portable, and not kept out of reach or dependent on the scheduling efficiency of any given practitioner’s office.
More anxiety is created by barriers to information, than access to information.
Physicians do not always properly inform patients of test results in a timely way. No patient should have to depend upon the perfection of his physician entirely, or have to schedule a repeat visit with that physician to discuss anything, because their results are held hostage.
Prepared patients are also more able to comprehend discussion of results, anyway.
So hanging on to abnormal results “until they can be discussed”, is not the optimal situation in any case.
Moof
First of all, I think that most patients, especially the healthy ones, wouldn’t want to bother with more than just a verbal or written summary of their labs, while others want the whole thing. Either way around, they should always be given some idea of what the results are.
If your doctor refuses to give them to you – then it might be time to find another doc. According to HIPAA:
“The HIPAA privacy regulation guarantees consumers the right to inspect, obtain a copy of, and amend their own medical records and restricts when and how “covered
entities” that maintain medical records may use and disclose protected health information.”
http://www.healthprivacy.org/usr_doc/RighttoAcces.pdf
I have a chronic illness (ESRD), and have done a lot of research on my condition. I’m allowed by most of my physicians to take an active part in my treatment.
I’ve never been refused a copy of the raw data from test results, however, I hated to always have to ask for them. So I went to the records office at my hospital, where all of my labs are taken, and signed a paper which allows the office itself to provide me with the lab results about 24 hours after they were taken.
People need to know that legally, they can be given access to all of their medical records.
Skibjork
Why not give patients their results… it is after all their health and their results. They paid to have the tests run and deserve the results of the test.
If anything this could help patients be more involved with their healthcare and it would be a learning platform to better understand the necessity of lab testing and how to interpret such results.
If you are getting phone calls from your patient about their test results think of it as job security. Take the opportunity to interpret those tests and educate those you treat… that’s where referrals come into play.
Customer service belongs in health care as well. I don’t see the cable tech getting paid extra to answer my questions.
Anonymous
Does this law require the DOCTOR to provide that copy, or the LABORATORY?
If you send that test to an outside lab, and that lab is billing the patient for the service, as far as I’m concerned, the lab should send the patient a copy.
If I do the work in my own lab, I offer the patient a copy as I’m explaining the results.
Offering a copy is good practice. Mandating this is a different matter.
I would require a follow-up visit to explain the labs, for a patient so concerned. Especially when they call back about some trivial anomalies.
Kim
I just don’t see why there would be any argument against giving a patient the raw test results. At least in my experience, we’re routinely given the films after x-rays to carry along to our orthopod or whomever, and we’re certainly not qualified to read those. (Maybe it’s assumed the poor ignorant patient never bothers to look at them?)
Anonymous
While I do think that patients have every right to have their whole medical record, there has to be some caution exercised. I went through many years of school to know what the possible causes of low sodium are and have had many years of experience to learn when it is important or not. I am happy to explain this to the patient, but I do not have the time to give a lecture on what every lab abnormality, or normality for that matter, means. Especially if my clinical experience determines that it is not clinically relevant or important. And before the attacks on not wanting to spend time with my patients begin, please let me say, that I would LOVE to talk to you for 4 hours about your labs, but my other patients won’t appreciate it. To say that my patients are “ignorant” because they don’t have medical knowledge is to also say that I am ignorant too – I didn’t know how to interpret labs until being well into my medical education. And when not in my specialty, I still don’t know how to interpret many labs – so I, too, am ignorant and have to rely on my doctors to make good decisions. MOST patients can handle this information, but not all. So where do we draw the line? And another point, giving a brief written explanation would not necessarily work either. It would need to be personalized, requiring the medical expertise again – so why not just have a doctor or other health professional explain it to you. So, using the low sodium example…it could mean that you are a little dry or you could have terminal lung cancer. Tell me that won’t create some hysteria.
From – a mostly content hospitalist who spends 14 hours a day at work and draws pictures for my patients (hearts with blocked arteries, etc) and explains things the best I know how but still has at least 50% of patients continue to drink themselves to death, smoke until the oxygen blows up in their faces and exploit my sympathy to go out and smoke so they can also shoot up at the same time
Robin
Amen Moof and “anonymous”…
I get reports all the time I have to have help deciphering, from my car to my finances. That doesn’t mean I shouldn’t get the reports asap! And so do you.
Moof, I, too, get my lab results as soon as or sometime sooner than my doctors. I did the same as you. I do think that amenity varies by state, though, just from what has been shared on the Cushing’s boards.
Just because a patient is not a medical doctor does not mean a patient is a) dumb or b) uninformed. Nor does it mean that I, the patient, will call and expect you to help me for free. However, I do expect YOU to get in touch with me in a TIMELY manner when you receive reports with abnormal values. And I expect you to realize those values are abnormal.
Case in point: WHen I was first testing for Cushing’s, the lab ranges for serum cortisol at midnight (late-night) were posted as the 4 p.m. ranges. My PCP had no clue the ranges were wrong, thus my abnormally high cortisol which was reported as “normal” was not normal. Because I requested a copy of the test results, I could point this out to her. She has been very gracious to help me since then and listen, in turn. I believe we are partners in my healthcare. So does she. That’s the way it ought to be.
I also get copies of CT and MRI scans via CD and send those to other experts to read. If I had not, my pituitary tumor would have gone unnoticed by my local radiologists. The experts to whom I sent them saw it. This would never have happened without my own intervention.
I could tell more tales, and I know hundreds of other Cushing’s patients who could tell the same. For those hundreds, there are hundreds more whose stories I have not heard. And this is just one fraction of the sufferers of one disease.
Regards…
Anonymous
Indeed.
Anyone with a complicated medical problem, I recommend they keep copies of their own medical records. It’s very helpful when they see multiple consultants, different hospitals in different cities. I ask the radiologists to make a copy of films; even better, the image is burned onto CD’s these days. Labs, operative reports, that sort of thing.
Anonymous
All that being said, I have to admit I have a problem with making this a law.
RRR
It sounds like it is the lab’s responsibility to send the summary to the patient, not the doctor’s office.
On one hand, doctors on this board seem reluctant to give copies of test results to patients, or even if they are not, oftentimes it is their office staff who makes it difficult.
On the other hand, I’ve had doctors who were very appreciative that I’ve got blood test results going back 12 years.
Here in Virginia, Quest Diagnostics will directly mail a patient their test results, after the patient makes the request in writing. And they doesn’t charge the $10 per page that my internist does. In fact, the one time I did this, I got the results in approx. 7 days from Quest
I was perfectly happy to bypass the doctor’s office on getting this information.
Robin
Anonymous @ 5:02
I can tell you umpteen dozen causes of low sodium, explain the relation of low sodium to endocrine function, and give you step-by-step biochemical analysis. And why do I know that? Because I have to deal with it in relation to adrenal insufficiency and pituitary malfunction. So, no, I don’t need to know why just anyone might have low sodium. I just need to know why I might. And when I’m in a hospital/urgent care/ED, etc. facility which has no clue because they aren’t used to dealing with patients who have had pituitary surgery, it pays to know. I’ve been there and done that. If I hadn’t known, I’d have been in a heap of trouble.
I can give you names of a large number of patients just like me who needed to know that low sodium is a problem (and we know it’s called hyponatremia). Often delayed hyponatremia causes major problems for us even though it may be symptomless until at very dangerous levels. We understand DI and SIADH. We know what CSW is. We know the differential tests between those, and we know when, even normal, the difference between two of the normals means something (i.e. serum osmolality vs. urine osmolality).
My point: I didn’t ask you (the doctor) to sit down and explain this to me. I learned it with the help of a wonderful support group and some research. Oh, and a rare endocrinologist. There aren’t many like him. I know…I’ve seen way too many of them.
Don’t sell your patients short. I talk with lots of pituitary-dysfunctional folks like me, some who have next to no education and some who have more education than you. Both sets understand enough to keep themselves alive. They know what that report means as far as their disease goes. That’s what they need to know.
As for those few who don’t understand at all, that’s what caregivers are for. We use them for all other aspects of life, including finances and legal issues. You deal with caregivers all the time, I’m sure.
And why not have a doctor explain it to me? Gladly, if that doctor doesn’t wait 7 days or longer while I’m seriously ill. However, I’ve learned the hard way I can’t count on that from any doctor/doctor’s office. In a perfect world….well, you know…
Don’t judge all folks by your skewed view of mankind through the picture-frame of your small medical world. You don’t see the rest of us because we fight hard to stay out of your way. That’s why we get those lab reports.
And me…I keep putting those rose-colored glasses back on and seeing where faith in my doctors will get me, but I’m also skeptical enough to keep getting my own reports.
Peace…
Lisa
“You don’t see the rest of us because we fight hard to stay out of your way.”
Amen, Robin.
Anonymous
To Robin,
You are what I call an informed patient and I would be very happy to give you all the copies of your lab reports. And I would speak to you in the medical language. But you are the exception. Out of the fifteen patients I saw today, maybe one or two would understand what hyponatremia is. And it doesn’t mean they aren’t smart if they don’t know, it just means that they aren’t educated on that particular topic just as I am not educated on the inner workings of my car. But I have to admit, upon first meeting you I would use the words “low sodium” and then alter my explanations after I got to know you as a patient.
You hit the nail on the head with the skewed view of the medical world. I am a human being and of course am guilty of generalizing my patients. Most patients do not know latin and medical jargon, therefore, they accuse doctors of being arrogant “gods” for using such language around them. Other patients who are more knowledgable, think we are arrogant for using the words “low sodium” and assuming they don’t know what hyponatremia is. It starts to feel like a lose-lose situation that ultimately results in worse care for patients and unhappy medical personnel.
I personally give the lab print-outs to my patients if they ask and think that patients should be as informed as they want to be. I even *gasp* refer them to certain websites (up-to-date has a new patient website that is pretty good.) And as far as the comment about patients knowing enough about their disease to keep themselves alive…I agree. But as a doctor, I MAY know more about the other diseases that the patient doesn’t have. That’s where you need us to help interpret the tests.
This should be cooperative, not adversarial. Back to my original statement….caution needs to be exercised. A negative HIV 2 weeks after you engaged in high-risk behavior does not mean you don’t have HIV and I certainly don’t want that person interpreting their own test.
Anonymous
Anonymous,
For every one patient like you that understands hyponatremia, I get 50 (usually with CHF) that think their low sodium means they need to put more salt on their food.
I can explain this to them easily enough but that takes time. And spending time with patients takes money or the practice goes under.
For those commenting about the misinterpretation of labs by their physician, wait until most of your care comes from a midlevel with far less training.
Manalive
This proposed law is known as “The Adrenal Adenoma Act of 2008″
charles kelly
I had a followup visit after a blood workup. The doctor said everything was ok. That was the extent of my visit for which I was charged the full fee.
Will a letter to my lab force them to give me a copy of the reports?