Updates:
- Feb 1, 2017: fixed some expired links.
- July 19, 2015:
- This has turned into by far the most-viewed and most-commented post ever on this site. This year alone it’s averaging 1,000 views a month.
- A few weeks ago the HIPAA authority Deven McGraw, who’s mentioned three times below, was put in charge of this issue at the Office for Civil Rights. Hooray!
- Last Friday (7/17/15) the New York Times ran an important related article, Hipaa’s Use as Code of Silence Often Misinterprets the Law
- Sept 12, 2013: See new section on Resources for Action at bottom.
- July 20, 2013: see attorney David Harlow’s comment below about a Federal exception for lab data, though state law may still protect you.
________
I’ve been infuriated recently by two “gimme my DaM* data” episodes where providers told me “No – you can’t have the report. We only send it to the doctor.”
That’s illegal.
It’s a Federal civil rights violation.
I am legally entitled to my medical record,
and you are entitled to yours.
Refusing to give it to you
subjects them to
Federal civil rights penalties.
Yet so many doctors and hospitals simply don’t know this. In my case, two independent shops recently said no – a lab and a radiologist – leaving me powerless. Well, I don’t take well to being powerless. So I acted. On Twitter today I said:
This feels ironic: a radiology shop is refusing to give me the radiologist report. Anyone have a link to “Docs MUST give pts their data”?
Within minutes I had responses from my excellent peeps @Rob_Havasy, @DLScherMD, @HealthBlawg, @AmyPricePhD – and then, the most awesome authority on the HIPAA privacy law, Deven McGraw, who tweets as @HealthPrivacy. They all linked to hefty pages packed with tons of information – as I told Rob:
I’ll give it to them but the harried clerk at this practice will glaze over at this document. :)
(Seriously: I had a great conversation with the clerk who registered me, who was struggling to learn her new EMR system. I need something nice and official looking for her to take to her boss.)
Deven had the most useful link, which ultimately led me to the flyer above. It was all about a meeting I attended last year at the White House Office Building, which I meant to blog about, but didn’t. At last, here’s the info:
- PrivaPlan’s blog: OCR Releases a “Right to Access” Memo Supporting Patient Access to Health Data (OCR is the Office of Civil Rights, which administers HIPAA)
- An excellent 1 minute video from OCR: The right to access and correct your health information
- The OCR’s consumer page. At top is a set of 7 excellent short videos, including this one.
- I salute whoever did those videos – they’re clear, focused, and SHORT – thanks for not making it a single 15 minute one!
- And that led to the PDF above. And there it is, right at the top: (Again, kudos to whoever did this!)
Walk in with this flyer. Many medical offices don’t understand the law.
[Wording tweaked 7/20 & 7/23…] My first problem was at AnyLabTestNow, who did some blood tests and sent the vials to LabCorp. (I don’t know which is the ultimate culprit, but AnyLabTestNow is the one who said “No, we don’t give them to you – the results are sent to the doctor.”) They did say I could get the results online, but not from them – via LabCorp’s connection to HealthVault. But that was a month ago and the data still hasn’t flowed through.
The second was Salem Radiology, for the foot x-ray I got this week. (Ironically, Salem Radiology gave me a free CD of the images – but wouldn’t give me the radiologist’s report saying what he found!)
Before I found this flyer, this morning I told the clerk, nicely: “Look, I know about HIPAA – I know I’m entitled to a copy of my record. Who do I have to talk to?” (Nicely, remember.) She put me on hold, and 3 minutes later came back and said “You can come pick it up – it’ll be out front.”
Score! Note: they told me no, until I said (nicely) that I know my rights!
Note: in both cases, the provider and my doctor’s office failed to transfer my information: the fax (yes, fax) disappeared and could not be traced. So I was delayed in getting what I paid for. (I paid for this out of pocket.) Plus, my doctor was delayed in getting the information.
If those idiots can’t manage to transfer information reliably, that’s one problem. (Yes, I’m mad.) They can work that out at their own snail’s pace. Meanwhile, gimme my DaM data – it’s all about me, so it’s mine!! I need that frickin’ info, to be responsible for my health!
* “DaM” is Ross Martin’s term for Data about Me. Here’s that song again, if you haven’t seen it.
Resources for Action
- FAQs – you have to search by category
- FAQ on Right To Access
- How to file a complaint with OCR
- The Complaint Portal for filing online
- Or file by email: OCRComplaint@hhs.gov
Martha Deed says
In New York State there is an Access to Patient Information Program through the NYS Department of Health. I have served on the that program’s Psychologists’ panel for nearly 20 years.
Even so, we have had trouble in our family. The difference is that I have generally won the battle on the spot — sometimes by asking if the provider wants to give me the record immediately — or wants a call from DOH. That usually escalates the conversation to a supervisor who releases the record.
In one instance, we were moving my daughter from one hospital directly to a second hospital (providing our own transportation) and hit a wall until I said I am not taking my daughter out of here until you give me the record — got a horrified look from my daughter who wanted out — and said, Don’t worry. I want you more than they do. And sure enough, the recoed was produced.
Note that I did not abuse my appointment by saying I had the DOH appointment. I wanted whatever I did to help the next person down the road.
I am very glad this flyer exists — on the NYS patient rights poster which is supposed to be in every office and hospital room, it does say you are entitled to a copy of your record. I consider this right a key to patient safety.
Ronald Todd Zeigler says
I must have a negative discharge report on file in some Doctors portal. I’m in the process of trying to find a copy of this report on any report with my name on it.
I fractured my spine twice last year and I am being unfairly treated with something is not right. I did not know that an unfair report from a doctor could have halted my spine doctor from alleviating my pain.
I am trying to find out what they are reading about me in the doctors Portal and interested in the how I can get negative statements removed from my health records. Doctor stated he cannot discuss my discharge comments with me.
So, therefore; I need the legal process of acquiring my medical records when the Doctor will not cooperate! Please help me find the proper legal way of retaining my medical records and the process of requesting negative comments removed so a doctor will not have a pre formed bad opinion of me before even meeting me and hearing my side of the case. I’m being denied poper medical procedures before I am being seen by any doctor!
This is unfairly being judged by one doctors negative statements about my healh medications and or wrong analysis of the real me. How can I see all of these records and go about getting these comments corrected when the accusations are not correct or impacting a opinion of me before even seeing me? HELP PLEASE!!!!
Alex Floyd says
I’m so sorry, they are doing the same thing with me. so I have to explain why I’m there again to another Dr whom has a bias opinion of me and I cannot revive medical treatment? I hope you get fixed I really do 2nd I feel as though I am being views as a member of the big N party for no reason I think think it’s cruel and unusual punishment and human rights violations to be treated in this manner for no reason.
someone help us from falling through these cravaces in this 21st century med system
Mississippi, usa
A
David harlow says
Dave —
As you may recall, lab test results from a free-standing lab like the one you describe (i.e., unless they are results from tests performed in-house at a physician’s office or health care facility, or they are already in a health care provider EHR) are the forgotten stepchild in the HIPAA equation. ONC started the ball rolling on removing their exclusion from the records that all patients are entitled to obtain upon request back in 2011 (see http://j.mp/NHoojz) but that draft reg seems to have slipped beneath the surface of the Beltway’s primordial ooze. So the availability of such lab test results is a matter for state law, and most states don’t let patients see them. There’s a chart of the various state laws here: http://j.mp/1bwKi6K – NH law allows patient access, MA laws allows patient access w/MD approval.
Dave says
I did not recall that – now I do! How frickin stupid is that?? Henceforth I’ll shop according to which labs do offer me my data.
BUT, this reminds me, they said THEY wouldn’t give me the data, but I could get it via LabCorp’s interface with HealthVault. Which I tried to trigger, but this reminds me it never came through. Off to the warpath…
e-Patient Dave says
David, thank you very much – I’ll correct the post.
I’m guessing that ONC is the agency that would correct this lab “stepchild” problem?
Charles A Townsend says
This is total crap. Every state should be required to uphold the law, to make medical providers, reguardless of where their test comes from, to give copies of those tests, blood test and other tests, directly to the patient
when the patient asks for them. No MD approval required. They should be available ASAP, before seeing the doctor when ready. It a patient’s right to their own blood test.
bev M.D. says
INteresting comment from David, as I would guess that over 90% of outpatient lab tests are now sent to free standing labs, Quest or LabCorp being the big players…..also, Dave, I notice down at the bottom that they have 30 damn days to send your data to you. I am hoping that most will just make a copy as you wait rather than deal with the red tape of the 30 days (except hospitals of course). Good for you for pioneering for us, again.
e-Patient Dave says
Yes, Bev, 30 days is the rule – it’s at least 10 years old, I think. It’s heartless BS – famously when Regina Holliday asked for her critically ill husband’s records they told her 21 days and 73 cents a page, but when the next hospital sent her back as their “courier” the hospital handed it all over in a couple of hours, free!
The govt being the govt, they of course have to state the rule. But as my example today showed, once someone decided to say yes, all they had to do was print the flipping thing.
Amy Price says
I think if we as one voice vote with our feet and dollars it may accelerate the speed of change. Also in Fl Neurophych raw data is only released to MD or another psych. This is so wrong because raw data can inform shared decision making.
William Reenstra says
I recently, had an experience with a hospital in California. I wanted to see my wife’s hospital records in real time (she spent 26 days in hospital). I was told “No you can’t see our new electronic records, it is against hospital policy. You can only look at the records in the presence of a nurse, because you might alter the records. We can send you the records within 14 days of the day your wife is discharged, but we need $0.25 per page.” After many visits to Patient Relations and perhaps a total of two hours discussing problems with my wife’s care that only became apparent days after they occurred, I was able to get the data on a CD the day she was discharged, a PDF file of just over 3000 pages! Yes, 3000 pages. If I had settled for paper I would have been charged $750.
If I had seen the data in real time, I would have been able to catch several potential serious omissions of medicines, given hospitalists a better picture of my wife’s health and made sure that all relevant information was transmitted at the time of hand off to a new hospitalist. I could of explained to the nursing staff at 9 PM why my wife’s blood pressure spiked. The Dr., concerned about drug interactions, had taken her off her blood pressure medicine for the last two days. Needless to say, the nursing staff was not going to search through the 100 pages of data per day in search of a cause of my wife’s BP increase.
I also discovered that their wonderful computer system is unable to plot changes in vital signs or blood test results from day to day. It either can’t or it is too painful to do, because Drs. only talked about test results in qualitative terms. They were never able to answer the question “How is this different from yesterday or a week ago.” When during the stay I did get some lab reports and showed the hospitalist that my wife’s signs were, despite his assurances, NOT improving, he was totally uninterested and dismissive.
My conclusion is that many or most Drs. want to keep patient information out of the hands of patients because, they believe that it will make their jobs easier They can’t conceive of a patient being able to learn anything that might improve his medical outcome. Only the very best Drs. have the self confidence to answer a patient’s question with “I don’t know.”
e-Patient Dave says
Bill, I’m saddened by your story of the avoidable shortfall caused by their policy.
I don’t know the people at that hospital but I do know a few things in general about the state of technology –
– I’m pretty sure most systems don’t have a “read only” mode. That lack probably led them to say “You can’t see, because you might break something.”
– From what you say, they don’t seem to have a culture of “let patients help” – no sense of “Could you check this before we move ahead with our next steps?”
– Their priority is clearly to minimize the risk to their own lives, not to maximize the quality of care. (There’s much incentive in their world for the former and none for the latter.)
As for the doc being dismissive, IMO that’s totally unprofessional and grounds for wanting him off the case.
This spring I met a Canadian group that recently did an informal study about exactly what you’re talking about – actively engaging patient & family in checking the record. I’ll blog about it.
Thank you for sharing this. Very important.
William Reenstra says
Dave of course they have a read only mode, they put the entire file into PDF. I actually got the files on disk, because after a few days of complaining, Patient Relations came to me and said that three days ago they had given me the wrong form to fill out, please fill out a new form. I was unhappy, but when they promised the files on disk the next day I said OK. After careful examination of the new form, I discovered this was the form for transferring files to another Dr. So they did do something positive in the end.
Have you ever tried to get a Dr. off your case? I was shown the statement from the “Patient’s Bill of Rights’ that was posted in 5 languages on the wall. I was told it was my right, but when we firmly and repeatedly requested that a doctor be removed, he just keep coming back day after day. Eventually we decided he knew more about Karen’s case than a replacement would and dropped the issue.
e-Patient Dave says
Everyone, look what Bill just said from his recent experience:
This is a clear picture of being NOT patient centered, NOT letting patients help.
I won’t interfere, but I wonder what we’d hear from the top executive at the hospital who’s responsible for patient experience at that hospital.
I’m also ready for the day when we name hospitals and doctors as readily as we name crappy restaurants. :-) Amusingly(?), when docs discuss public doctor ratings, some are all for it, and some think it’s a baaaad idea. And in Washington the American Hospital Association pretty much objects to anything consumers ask for, saying it’s too haaaaaard or hasn’t been studied enough.
Only we can speak up for the patient-centered perspective.
Bart Windrum says
Dave you stimulate me for the very first time to publicly name the hospitals where my family experienced my parents’ terminal hospitalizations.
2004 mom/3-week intubated ICU stay: West Boca Medical Center, Boca Raton FL. At that time our experience was of consistently callous orientation to our patient-family.
2005 dad/fatal nosocomial MRSA: JFK Medical Center, Atlantis FL; at the time a Jayco 100 facility
Since they don’t keep medical records longer than seven years, and since I haven’t said anything specifically negative here, perhaps I don’t have to worry about getting sued.
e-Patient Dave says
Bill, re “read only mode” – I meant DURING the case, while she was in the hospital – while your checking the data could have helped.
Otoh, I supposed they could spit out a PDF every day, huh? Hm.
Leslie says
Well, in my experience, you can get them, but they might cost you a pretty penny. See my post:
http://gettingclosertomyself.blogspot.com/2013/07/what-happens-when-your-medical-records.html
e-Patient Dave says
Yes, at present individual states are allowed to set the price, and it can be obnoxious. My impression is that it’s starting to change, sometimes via consumer rebellion, but that doesn’t always work.
I want to see hospital & doctor rating sites include the provider’s GMDD policy! (For those who don’t know, that’s Gimme My DaM Data, and DaM is “Data about Me”.)
e-Patient Dave says
btw, I recommend Leslie’s post – a true story of a totally unexpected bill (23c a page, without advance notice), including hundreds of BLANK pages. Rampant incompetence, both in the printing and in the customer service aspect.
And she fought back, and won.
But again, the cost issue is separate from the issue of whether they’ll even LET you have your data.
Amy Price says
I was charged 1.00 per page and then charged again for copies lawyers got independently. This area is ripe for reform. I have also been ordered to supply realms of printed materials I paid for and reproduce this for no compensation by lawyers opposing a claim. Also have noted people paying for hundreds of blank pages or duplicate information. GIVE ME MY DAM DATA! Thanks for advancing the cause!Let Patients Help! Shared informed decision making requires shared data!
e-Patient Dave says
> Shared informed decision making requires shared data!
As SPM co-founder @DrDannySands says, “How can patients participate if they can’t see what I see?”
Angela Ursery says
Unfortunately, the material you’ve presented, helpful though it is, doesn’t relate to mental health /psychiatric treatment records, which can be withheld from a patient indefinitely if they could somehow cause [undefined] harm to the patient. This is extremely unfortunate, and should be rectified in HIPAA.
e-Patient Dave says
I’m inclined to agree, Angela!
Stales says
This is such important information. I’ll make sure to share this post with other patients. So many people don’t know they can have access to this information! Thank for writing about this important issue.
e-Patient Dave says
I talked today to a patient who needs to complain, so I added a section to this document with links to the complaint procedure on the OCR website.
Fabian says
I just went in a couple of minutes ago to my doctors office and asked to get a copy of my blood test results and they would not give me a copy because they said I had to review them with my doctor why? Why would I have to see them with my doctor I have gotten multiple blood test before and receive a copy with my previous doctor. This just got me mad and is going to waste my time and my doctors time just to go over the results with me I just want my copy and her assistant wouldn’t give them to me
e-Patient Dave says
Fabian,
Assuming you’re in the US, I asked two HIPAA experts (via Twitter) whether what your doctor said is legal. Here are the responses, unpacked from their compressed Twitter replies.
David Harlow (@HealthBlawg): https://twitter.com/healthblawg/status/440862955677442048
1. If the lab is in the MD’s office, they must give you your data, or it’s a civil rights violation, as described above.
2. If instead they sent the blood to an outside lab, then at present their response is legal; starting in October they must give it to you anyway.
3. Some states’ laws say they have to give it to you now anyway.
Deven McGraw of the Center for Democracy & Technology (@HealthPrivacy) basically agreed.
annoid says
Hi,
I went to a doctor I do NOT trust. I want him to remove anything and everything he put in my file. His office is saying it is illegal for them to do that. Do you know if that’s true?
Chris says
I had some (poor) surgery done by a top doctor in Chicago. When I tried to get copies of my medical records they gave me the run around, omitting half of my post-operative photographs, as well as all emails I had exchanged with them, and without explanation. I knew this was unlawful so I filed a HIPAA complaint with the OCR early last year. It was assigned to a lady in the Chicago HIPAA office. She spent 8 months doing very little other than avoiding my questions and letting the Chicago doctor and his university data office avoid addressing the issues I had raised. Then she sent me a letter stating that the case was closed but making no other conclusions about the issues I had raised.
So I took this up with her supposed “supervisor” who was also utterly incompetent. He told me to file another complaint – which I explained was pointless as the original one had been closed and I was out of time to be making another especially over the same issues as the last. So he said he would go for a review. Then he spent two months ignoring my phone calls and emails, other than sending occasional cryptic one line emails which explained nothing. The other week, he sent me an email stating that if I want a review I should write to Head Office, and that it was nothing to do with him (he of course denied that he had previously told me he was seeking a review). So I rang central office in Washington and they told me to contact the Chicago office, and would tell me nothing else.
In short, they have been completely incompetent and it seems there is no way of addressing this, other than by perhaps getting an attorney which I don’t feel is financially viable for this matter. It’s probably too late to get the OCR to review their closure decision now, because it was in November last year. However, do they have a process for complaining about their own decisions and if so can you tell me who to contact about it? Thank you.
e-Patient Dave says
Ugh. I’ll see what advice I can get.
This reminds me of the much-publicized FCC “Do Not Call” list. For years I submitted well documented complaints of violations and never heard a thing back.
The “Federal civil rights violation” warning will have no impact if the violators know the cops aren’t doing anything…
e-Patient Dave says
I just spoke with OCR, and they say that as you’re aware, the case was fully investigated and resolved.
Chris says
Thanks, I’d be curious to see if they have a formal procedure for dealing with complaints about their own case decisions because I’ve found it impossible to discover if they do, they just ignore me.
Chris says
Dave, I find your response disappointing. You seem to have taken their word for it. I can assure you it was NOT “fully investigated” or “resolved”, it happened exactly as I have described. Of course they claim it was investigated properly because they don’t care about proper investigative process only ostensible process. Can you tell me who you spoke with?
e-Patient Dave says
Sorry you feel that way, Chris…. I don’t know you, all I know is (from your IP address) that you’re in London.
I don’t know your age but anyone who’s been drawn into a dispute between two unknowns on the internet knows that it’s a hopeless sinkhole to decide which “seem to have taken their word for it” to side with, when all one has is “their word” on both sides.
So, I won’t be pursuing this further. Perhaps you’ll conclude that I must be in collusion with bad people. I dunno – it’s the internet. You can’t know either.
In any case I hope you find the care you need, in London or wherever.
Chris says
OK Dave, I appreciate my true experience is unknowable for you. However, whoever you got the information from that my complaint was properly investigated isn’t to be trusted. I was just wondering if the OCR have a complaint process about their own decisions, that’s the issue I raised with you, so I don’t really understand why you ignored that. Maybe you have trust in the person you spoke with. If so, I recommend questioning that trust. Thanks anyway.
Amy Price says
Really sad you are going through this and that your needs were not met. Can you think of ways other patients could avoid this? Laws from country to country vary substantially and the UK and USA health systems are very different as is the prevailing mindset for satisfying an inquiry. It may help to get in touch with advocacy orgs in the country of origin as you are likely not alone. Giving advice and recourse that works in one country can do more harm than good when applied to another nations health care system
Chris says
Oh I’ve been through much worse, I just find it deeply unimpressive that the OCR has such disregard for fundamental fairness regarding HIPAA complaints. I reside in a western democratic country comparable to the US in terms of its expectations of modern regulation, with the two fundamental expectations being transparency and fairness. Neither of those occurred with my HIPAA complaint.
Veronica says
I had my yearly pap smear and blood work done at my doctor’s office. They Called me to come in for my results when I got there the receptionist told me I need to pay $80 for my visit before I can get my results because my insurance cancel. I told her that i don’t have any money and i should not pay for a follow up visit because when I did this visit I had insurance and they paid for it. They refused to give me my results so I left crying. Now am left worrying about what’s abnormal or what my blood result is.
e-Patient Dave says
Veronica, I don’t know what the rules are, but it doesn’t seem right that they’d not give you the results of something you paid for. Heck, I don’t even know if it’s a HIPAA issue. Have you tried to contact agencies at the “Resources For Action” heading, at the bottom of this post?
Let us know what happens –
Chris says
P.S.
I’m revisiting this as I have a couple of more things to say. Better late than never, eh.
I note that this comment seems to be an attempt to condescend me: “I don’t know your age but anyone who’s been drawn into a dispute between two unknowns on the internet knows that it’s a hopeless sinkhole to decide which “seem to have taken their word for it” to side with, when all one has is “their word” on both sides.” Why does my age matter, unless you are attempting to imply I seem naive? Which, incidentally, I don’t accept.
I’m afraid I also find it unprofessional that you secretly obtained information about my HIPAA complaint from someone at the OCR, without my explicit consent or knowledge. How is that even legal?
e-Patient Dave says
Please don’t mind-read me (“attempt to condescend”). I found out absolutely nothing specific about your case; I made an effort to engage in the issue, and I got nowhere. That’s all I have to offer…
nychol garza says
My daughter was diagnosed with A Spinal Disease I Lost All Her discharge paper work Luckily Her peditrician got the Papers For me but now Wont Give Them to Me says He Isnt Allowed To i Have No Money To Pay For Them And Her Doctor Seems like he Doesnt know What He is Doing I Want To Get The Papers so I Can Find a Doctor Who Knows Her Condition What Can I Do
e-Patient Dave says
Where do you live?
Chris says
I was hospitalized in the state of Michigan for 11 days against my will.Then forced by the hospital to relocate to Florida.Once in Florida,I requested medical records from the hospital. They told me it would be illegal to release my own records to me.I then changed. Insurance companies and they wanted my written consent to obtain my hospital records,promising me that they would give me copies of the entire report. When they told me that they received my medical records,they too also refused to let me see or obtain them. What the h*#l is going on? What can I do to obtain my bloody medical records? Why are they secretive then the JFK assassination reports? Aaahhhh!flippin,frickin uuuhhhggg!
e-Patient Dave says
Chris and all, I feel your pain, but honestly telling the story here is of no use. All I have to offer is what’s in the post above.
Please, before posting here, try what I said above. If that doesn’t work then we may have more to discuss – post what the response was.
Aora Smith says
I talked to my Dr’s Office today(I am in Texas) to request a determination (progress notes) and hopefully an opinion based on my Doctors recent findings on my health for an SSI disability hearing. I asked for copies of my records and they said SSI has to ask for them. I told her I don’t have the time (Final hearing is Monday, Oct 20th) and she said I could get them but it would be $25 AND I would be discharged as a patient if I did so. I AM OUTRAGED!!!!!! So yes, you can get them but the cost is ridiculous. I am sure this isn’t the only place this happens.
Ben says
I was involved in an auto accident, went to an ER in MA, and was referred to one of their specialists.
now, months after my treatment is over, I need something in writing from the specialists office stating a few simple things- my name, medicare #, date of accident, dr’s recommendation, and that I no longer need his treatment to wrap up an insurance settlement- and they have refused to write any such letter, and Im not not able to even go forth with this case in which I’ve already spent months and countless hours putting together, and they have blocked me from getting the last piece of info needed, is this legal?
e-Patient Dave says
That sounds like an awful experience. I’m certainly in no position to give legal advice (“is this legal”).
But it sounds like your question is about getting them to issue a professional judgment about your care, not about access to copies of your record, no? That’s beyond the scope of this post, I think.
Ben says
Thanks for your timely response, looks like I’ll be further investigating all day today. sighhhhhhhh
Ly Fin says
Hello! I have been requesting (both verbally and in writing) for the medical records of my mother to be transferred over to her new physician but to no avail. The staff at her previous doctor’s office has been giving me the run around and when I’m successful at getting them on the phone, all I am told is that my request will be looked into and someone will return my call. But I have yet to hear back from them. It is now a tad over 2 months since the request was made. I live in California and would appreciate any information on how, where, or who I can get in contact with to have the previous doctor’s office comply with my request. The letter acknowledges my mother’s request to have her records transferred; also, I have a HIPPA form in place so that I can speak on my mother’s behalf. Any information is greatly appreciated! Thank you!
e-Patient Dave says
Hello, Ly.
I myself don’t know specifically where to go in California. Have you tried what I did – tell the problem office that you’ve learned it’s a Federal civil rights violation, and ask who you need to talk to before you go to the civil rights authorities? Have you tried the other resources listed in the post?
If what you say is true, their conduct is really not acceptable.
e-Patient Dave says
What Erin didn’t mention here (but she did on Twitter) is that the California enforcement agency is here. We don’t know exactly what will happen.
Erin Gilmer says
I would add one more thought to this great post. Personally I often experience the problem where providers only provide what is in the electronic health record (EHR). In other words, they open the EHR and push print but this often misses things like your billing record, messages you may have left for a provider, diagnostics, and many other things that are not kept in the EHR itself. When asking for records, ask for them ALL and make sure they are providing them ALL. It’s all too easy for them to just push print and wash their hands of you and you are left without pertinent info.
(Note: This is not legal advice but information gleaned from personal experience.)
Erin Gilmer says
And on another note (again not legal advice but personal experience): for those seeking help on how to address HIPAA compliance, you can always file a complaint via the OCR here – http://www.hhs.gov/ocr/privacy/hipaa/complaints/index.html
This process takes a while, so in the meantime you may want to contact your state’s attorney general or department of health. Each state has it’s own health privacy laws and enforcement usually overseen by one of these entities. If they can’t help you, they will direct you where to go.
Neha says
Hi,
I’m 35 weeks pregnant with my second child and wish to try a VBAC. But the doctor needs the operative report to decide if I’m eligible since I had my first child through a cesarean section in March 2009.
I have contacted the hospital and the earlier doctor (I’m seeing a different doctor and delivering at a different hospital for my second pregnancy) and both have said that they do not have the operative report in my medical records.
Would appreciate any suggestions on possible ways to get hold of the operative report? Thanks.
e-Patient Dave says
I asked Twitter friend @MidwifeAmy, who knows a lot about childbirth records, which I don’t. If I hear anything back I’ll let you know – here’s hoping!
Neha says
Thank you.
Neha says
Hi Dave,
The response I got from the medical records dept. is that the operative report is mandatory for a C-section performed under general anesthesia and is optional when done under spinal or epidural.
Any idea if there is a law which states the above?
Thanks.
e-Patient Dave says
I would be very surprised if that were a law, but I don’t know.
Do you have any ability to find a different hospital, even on this short notice?? It seems clear that these people are not interested in your preferences.
If I were in your position I would ask “May I ask, by what rule is it mandatory? Is that a law, or hospital policy, or what?” If they respect you at all they’ll give you a truthful answer, and if they won’t answer it, or answer it disrespectfully, you may want to think about how they would treat your wishes if any difficulty at all arose during the birth.
I wish you the best – remember, I’m no attorney nor medical professional of any sort, just thinking about the basic human relationship aspects of what you say.
Amy Romano says
Neha,
I agree with e-Patient Dave’s responses and am sorry you are facing this situation. Unfortunately, it is very common for issues like this to come up late in pregnancy and for care providers to attempt to revoke the right to plan a vaginal birth.
Every medical decision involves some uncertainty, and it can be hard to have conversations about risks and advantages/disadvantages of a treatment option when information isn’t available. But the prior surgical report is not critical information if you meet certain criteria: If your cesarean birth was in the United States and at full term (near your due date), it is almost certain that you have a low-transverse scar, which is the information your doctor and the hospital are looking for. Also, if you had anything other than a low-transverse scar, your doctor would be likely to have told you about it and explained the reasoning.
I agree that this could be a potential “red flag” that your care team is not on your side and it would be a good investment of your energy to explore changing providers and/or hospitals even at this late stage of your pregnancy. I encourage you to contact your local chapter of the International Cesarean Awareness Network (ICAN) to get help navigating these conversations with your doctor and hospital, and finding new providers if you decide that’s what you need to do. http://www.ican-online.org/
As for a legal question, I am not aware of any such law and would be pretty shocked to learn that such a law exists. ICAN might be able to help you find out for sure, but I would bet that it is a hospital practice guideline, not a law. As a patient, you have the right to decline/refuse treatment that is recommended, even if this puts you or your baby at higher risk. (But again, lack of medical documentation most likely does not put you or your baby at any higher risk than if you had a documented low-transverse scar.)
Ask lots of questions, get support from other women who have been in your shoes, and make the decisions that feel right to you. You absolutely deserve to be able to make an informed choice about this, but unfortunately in our system that can be an uphill battle, especially when birth is involved.
I should include a disclaimer that even though I am a clinician, I don’t know the details of your case so please talk to a care provider or someone who knows your full history and preferences.
Wishing you the best!
Amy Price says
Asking for your records at time of service may be the easiest most efficient route. Great blog on this here http://martineehrenclou.com/2015/07/patient-as-data-hub-get-copies-of-your-medical-records/ nice as it also highlights legals status for radiology reports
e-Patient Dave says
Here’s an update two years after this post:
1. This is by far the most-viewed and most-commented post ever on this site.
2. Last Friday the New York Times ran a great, informative piece about a related aspect, HIPAA’s Use as Code of Silence Often Misinterprets the Law. But even now they don’t mention that it’s a Federal Civil Rights violation to not give you your data. You should know that.
3. My heart jumped for joy a month ago with the news that Deven McGraw, the BESTEST authority on HIPAA reality, was named to pretty much run HIPAA at OCR (the Office for Civil Rights). (Note: Deven appears 3 other places on this post, including as the one who gave me the best advice for this page. She. Is. Excellent. And knows this stuff, legally and pragmatically.
David Smith says
But, where do I find that I have the right to view the records in the medical faciliity? Florida requires $1.00/pg for first 25 pages, then $0.25/pg after that. I want to have my records transferred to another facility and do not want unnecessary stuff sent.
In fact, I am thinking about taking a photo of every page!
e-Patient Dave says
David, again, I’m no expert; all I can do is suggest contacting OCR.
I do know, though, that many providers will charge YOU but NOT charge another doctor or hospital who requests the records. Have you tried asking the new one to request them?
David Smith says
While I do have an issue with being charged, that authority is in the Florida Law (Dr/Lawyer collusion?), I do have an issue with not being allowed to even look at them. I do not mind that they have someone sit with me when I view them. Actually, I would like to take so photos of documents as well.
Looked up HIPAA and it clearly says I may ‘see and be provided copies.”
Have advised provider, so will see what happens.
Daisy Buchanan says
Hi Dave, I have an odd question. i have been going to the same practice for ten years. Pap smears, medicines for depression and anxiety… All that.. During my last appt I sat in a waiting room for 2 hours. In the waiting room there was an accordion door closet that would not close.
I was horrified to see at least 100 medical files in Manila files. Not boxed. Not locked. Totally accessible. Named labeled etc…totally accessible.
If I was a criminal – I could have taken my I phone and photographed every file and solen those patient identities….!!!!! I don’t want to go to the dr anymore due to their awful negligence of privacy. But if I leave. My paper file might end up in that exam room and not locked up.
I am actually considering stealing my folder off the back of the door and then reporting their recklessness with old records to the authorities. Could I be arrested? I have photos of the closet with files falling out but the practice will probs
get fined. Help? How do. Get the original paper copy( they are not electronic.) I need help! Thanks Dave
e-Patient Dave says
Wow, Daisy – that’s astounding, and yeah, somebody seems to be looking for trouble.
As I keep saying here, I’m no authority on any of this; for that I keep having to refer people to the Office for Civil Rights. All I can say to this is what I would do: I’d ask to talk to the office manager and say, “Do you know those records are out in public view, and that makes you liable for huge HIPAA fines???”
It would probably produce a “Holy crap!” response, with the records being shoveled into some BACK closet (not out in public). If it’s not fixed the next time, by all means they’re asking to be reported.
Don’t assume the practice will get fined from one photo. You could post it on Facebook and even name the practice and I doubt very much any harm would come to them from just that – prosecution etc is expensive. But again, I don’t know.
JH says
Hi Dave,
I am a Case Manager in a large hospital in DC. I see the families of patients who want access in real time to the medical progress notes and numerous consults, all of the CT/MRI radiology reports…, but, with no one to assist them in getting this information.
When I asked the nurse manager to allow the family to have access to the medical reports , she was astounded. Finally, she took it to the C-Suite, they told her it was up to each doctor to decide if they wanted to give copies of their notes to the patient. That’s when I was astounded.
At any rate, I have been given numerous stern looks from Dept Heads and the Nurse Manager for pursuing this. It does not keep me from telling any interested amity member to request a copy of the daily progress notes and more importantly the consult notes on a daily basis. After all, it is there family members Medicare that is paying over $500 for each Hospitalist that walks into the room, consultant fees are much higher. How can they make an educated decision about their loved one’s care without this information? And I mean while they are in the hospital, not after they leave. The Y generation will not put up with this kind of injustice, thankfully for the Baby Boomer Generation!
JH says
Dave, the fees for a copy of the records is not even ethical. Not only has the patient paid the doctor for seeing him, but, also for writing down a note of what he did and saw? So, in essence, they are being paid twice. Once for their service, and, once for getting a copy of that service? That’s double-billing. It’s the doctors responsibility to provide the patient with a record of what he prescribed and why he prescribed it, the patient should not be billed twice for this information. Most patients do not have the money to afford their medications, much less a copy of their lengthy records.
JB
e-Patient Dave says
Hi, JB. Your words are all too familiar. Do you know Regina Holliday, widow of a former patient at several big DC hospitals? She and her husband went through great indignity (and pain, for him) because one hospital (perhaps yours) tried to charge her 73 cents per page to get his records when he was transferred. Disgustingly, when the new hospital sent her back with a note saying she was another hospital’s courier, they handed the records over at no charge.
(Plus, they had told her it would take 21 days to print them for her … but for another hospital, they did it on the spot.)
Since her husband’s death she has become a major activist, with a crowdfunded film 73 Cents. She’s done much more – you can google her name, see her blog, the movement she started “The Walking Gallery of Healthcare,” and more; in 2012 Forbes asked Will Regina Holliday Become Healthcare’s Rosa Parks?
We all need case managers to work for change within the system. Thank you for being one!
Bart Windrum says
JH, Thank you for framing MD services in terms of consulting. For some reason I had not done so in my own head but of course when we hire consultants we pay for both head time and reports. Duh! And there ain’t no consultant in most of our world’s that charges anywhere near what docs during hospitalizations do. Very useful frame.
Maria says
I had a similar situation in which my doctor’s office wouldn’t release copies of my blood work results. They said I must first see the doctor. I have always been able to have access to my medical records and I was shocked to hear that. Can a doctor deny me copies of my blood work until I am able to consult with her? I’m really confused and infuriated. Please help me clarify this situation.
e-Patient Dave says
Maria, I’m not an expert in this, and I know some laws about lab results have varied by state, and I don’t know what state you live in, and I don’t know when this happened. But I’m 99% certain that since Feb of 2014 you’ve had a legal right to your lab data. See if this post by an attorney on the Society for Participatory Medicine blog helps.
I do remember hearing that some states had archaic laws (enacted by MDs, of course) requiring a doctor vi$it, but I don’t think that’s allowed. If you feel like sharing your state – and how long ago this was – we can see if anyone knows.
Maria says
Thanks for your quick response. The incident happened on October 11th, 2015 in Queens, New York. I called my insurance company and they said I could file a complaint against the doctor. I have not pursued the matter because I have not had time to go back to the office. I will be visiting again this coming week but this time I’m going armed with the HIPPA documents I have received. Again, Thank you.
Carol Singer says
I was told the same thing about my back x ray results . They said I needed an appt. with the PA who ordered the x rays. In the past x ray results were always mailed to me. Never needed an appt.
e-Patient Dave says
Carol, what they told you is wrong, actually illegal. You can call them and say you’re requesting the radiology report under your “HIPAA Right of Access.”
What kind of practice is this – a hospital, a doctor’s office, other?
J. Adams says
Dear e-patient Dave,
I live in CA and would like to obtain mri reports. When I had the mri done I said that I would like to fill out the necessary forms to have the reports mailed to me. I WAS TOLD AT THAT TIME BY 3 DIFFERENT PPL THAT THAT WAS IMPOSSIBLE. (This imaging chain is huge, – 5 locations.) I had no problem having a lab do this for me re blood tests. I believe there is recent legislation re this and wondered if it included imaging. What should I do? I was told I could pick them up but it’s a 2 hour drive one way. Thanks for any help.
e-Patient Dave says
Arg. I can’t help you myself, but if I were you I’d put on my best empowered consumer voice and call the chain’s home office and say you need to talk to Legal. Seriously. And say (calmly but clearly) that you know your HIPAA rights and you intend to file a complaint with the Office for Civil Rights in Washington.
Give them this shortened link to this page: bit.ly/hipaarights
Amy Price says
Can you get FedEx or UPS to pick them up and deliver?
Mike KImball says
I had a UK physical done in LA and company paid for this, I called clinic as I wanted a copy of this and was told that it is companies property since they paid for this?
Is this true as I thought I would be able to have copy of this for my own records, I do not work for them at present.
Do I have any legal action that I can use to get a copy of the UK physical.
e-Patient Dave says
What do you mean by a UK physical?
Nancy todd says
Hello’ I had wrotetodoctors to release my records 2006-2015 she will not mail them to me’ what do I do next?
Eric N. says
What if you’ve had x-rays taken at a dentist’s office but after a few years of poor service you’ve decided to switch dentists, but when asking for the x-rays the office only provides you with paper copies of those x-rays? That doesn’t seem too helpful for your new dentist. As the patent, are you entitled to electronic or digital copies of your x-rays? Don’t you have the right to medical records that are more detailed, accurate, or at least in good condition?
Danikak Brinda says
Eric
I posted to e-Patient Dave in response to his question, but thought I would share here.
Patient’s have a right to an electronic/digital copy of records from a healthcare organization if it is stored and maintained in that manner, but you MUST ask for them in that specific manner. I would suggest going to your dentist and requesting that you receive a copy of your dental x-rays in an electronic format. You can work with your provider to determine the best format based on their current system capabilities, but common are a USB or burned to a CD. If you need it, the specific regulation for this is 164.524( c )(2)(ii).
Best of luck!
e-Patient Dave says
Thank you! What’s your background?
Danika Brinda says
I am an college professor teaching in health information and informatics. I found a passion for helping healthcare providers and patients navigate the complex privacy and security regulations! My goal is making HIPAA simple and fun! Everyone should know their rights!!! I own two consulting businesses, TriPoint Healthcare Solutions and Planet HIPAA!!! Happy to help!
e-Patient Dave says
You get a prize – first I’ve ever heard HIPAA and fun in a sentence! How’s it going? :)
Eric N. says
Any information at all would be helpful.
Melindah says
I had a vaginal ultrasound a day before. My gynecologist has certainly got my results from the radiology center but she has not got back to me. Given her past history, she will probably not get back to me by next week. I called up the radiology place and asked for a copy of the report and they said they can only release my report to me after 5 days and not earlier. Is this legally allowed? The radiology place used to release reports after a few hours but since they merged with another group, new rules have been supposedly put in place! The suspense is killing me!!
Hadenuf says
Today I had CT scan on my wrist at jubilee hospital Victoria BC.i asked 5times if they could simply tell me if there is still a shred of cartilage there after waiting 5months for x-ray results. I was denied my results although I have previous x-ray showing the shadow of what’s left of my cartilage. (Induced by being forced off road by drunk driver). I had to ask my dr 3times and mention my lawyer before I got x-ray a year previous in the first place. I was never told what was going on with initial x-ray. No follow up. I was sent to Physio. Physio was actually not what was needed. The exercise recommended in Physio damaged the cartilage more. they even asked me to try playing guitar and tennis to see if I could. I never got to tennis, guitar playing is painful. But no one apparently looked at the x-ray or bothered to look? So I finally get to specialist after 3years of pain, he tells me my cartilage is nearly gone. Why didn’t I know this until now is what I’d like to know? Back to soft cast. I am going into collagen supplements purely experimental. the surgeon said if they remove bone it will lose power and maybe still have pain. I can’t say more detail as icbc is involved. IMO it’s a mess. Meanwhile i must drive from gulf islands to Duncan to see a dr becuz guess what kids? There are no drs south of Duncan! Thank you Christie Clark. Health care in BC is in violation of too many items to list. Watchdogs lawyers come on!! Let’s go. I will tell my story if it meant change for the next 7generations.
Wake up Citizens. Why are we treated like children by our government? The lawyer dr physio lab technician, everyone but the person having an image of their body part recorded, is having access? My rights are violated. I never signed away my rights to those images. PS. The hospital did not recognize my chiropractor billing number. They refuse to recognize the only dr who helps me with imbalance from using one hand for all tasks. Thank you for this forum.
Karen says
I’ve learned the hard way to collect your records at the time of each visit. Not only do U get them free but You get them unaltered as well. I just wish i would have done this from the beginning.
e-Patient Dave says
Some do, some don’t – it varies SO widely, in reality. If you’ve found something that works, terrific!