Guest post by Alan Viars (@Aviars), CEO of Videntity Systems, Inc.
This past year my father required open heart surgery. This is a short article about the hurdles we (his family) encountered along the way. I’ve changed the names, because it is not my intention to embarrass particular hospitals or physicians. The issues I raise are systemic within the American healthcare apparatus. My objective is for you to get smart, get mad, and gain control of YOUR medical records.
In July 2009, my father, Charles, had a routine follow up with his primary care physician, “Dr. Smith.” Dr. Smith told my father, “Well Charles, your EKG came back the same as last year: abnormal.” “Abnormal? What?! Last year was abnormal, too? This is news to me!” My father was stunned.
“Well, you knew you had a heart attack, didn’t you?” asked Dr. Smith. “I don’t know anything unless you tell me!”, my father told Dr. Smith. The doctor changed the subject to treatment: “Let’s get you in to see a cardiologist.”
Yes, that’s right, my father unknowingly had had a heart attack even though he was regularly receiving medical care. A year prior his physician either didn’t bother to look at the result of his EKG or failed to inform my father of his condition. Unbelievable, I know, but true.
A month later, my father visited a Charleston, WV hospital to assess the blockages and see if they could be repaired without bypass surgery. It turned out that the blockages were much worse than anticipated and it became certain that my father would require open heart surgery. With a 75% blockage in one artery and a 95% blockage in another, the cardiologists were amazed my father was even walking around and not experiencing chest pain.
My sister, Lindsey, a headstrong nurse anesthetist based in Richmond, VA, came home to oversee my father’s medical care in Charleston. Lindsey watched over my father like a hawk and prevented more than one medical error. For brevity’s sake, I’ll spare all the details, but her impression was that the cardiology department in Charleston was in disarray and no one was sure who was going to perform the open heart surgery.
As a “Health 2.0 guy,” I turned to the Internet for answers and to determine the competence of the Charleston based hospital. I found free reports on healthgrades.com and determined that the heart surgery-related mortality rates to be relatively high at this particular hospital. Of course, the higher mortality rates might be attributable in part to the general health of the surrounding population, but it was several times higher than some of the top-rated hospitals on the site.
Because my sister works in and is familiar with the healthcare system in Richmond, VA, she and I convinced my father that he should instead have his surgery there. Lindsey felt she could have more control over the situation if he were transferred. Also, according to healthgrades.com, Chippenham in Richmond, VA was among the Top 50 hospitals in the country and this is where my farther eventually had his surgery. (I’m providing its name since we had totally positive experience there.)
With the decision to move to Richmond began round two in my father’s battle to gain control of his medical information. The Charleston hospital did not want to release his information and the nurses and the physicians tried everything in their power to prevent the transfer and, apparently, “keep their customer.”
The Hard and Fast Sell:
After the cardiology department was alerted we were transferring, a new cardiovasular surgeon came to visit my father at 10 PM and said, “Hello Mr. Viars. I’m Dr. Jones and I’ll be performing your bypass tomorrow morning at 8 AM.” No family was around at the time and my father flatly refused and told the surgeon that arrangements had been made for his transfer the next day.
Holding Medical Records Hostage:
Before the transfer to Richmond, my sister requested a copy of my father’s medical records from the cardiologist. “We don’t normally do that”, the cardiologist replied. Later that morning, she went to the hospital’s records department and asked for the records. “We can’t give them to you. We can only give them to the patient. We’ll transfer them to the other hospital for you,” said the woman behind the desk. Lindsey replied in a raised voice, “Here is my photo ID and a document confirming I have medical power of attorney. My father is upstairs if you want to confirm.”
Trying a new tactic, the women behind the desk then told my sister that, “His records are not complete and we aren’t allowed to give out incomplete records. We will have to wait until later today when we can speak to the cardiology department and make sure its okay to release the records.” My sister was insistent, “Look lady, my father is leaving today, and you are going to give me those records right now. I don’t care if they are complete or not. I’m standing right here until you give me my father’s records.” The woman left to speak with other staff members and my sister said it looked like they were “holding court” trying to determine if they should release the records. In the end, they relented. We got the records, my father made it to the other hospital, and had the surgery. I’m happy to report he has recovered remarkably well. We have a happy ending, but my guess is that others haven’t been so lucky. Here are the takeaways:
Lessons for the Wise:
- When you have medical tests, YOU THE PATIENT, need to ask for the results. Get a copy. Make sure your physician has actually reviews your tests. Just because you didn’t hear anything, don’t assume everything is okay.
- If it’s possible, when you go to the hospital have someone by your side who cares about you and can advocate for you. If you’re lucky enough to have a nurse, physician, or other medically educated person to be your advocate, even better.
- Sadly, you may have to get angry in order to gain access to your medical records. Don’t let them tell you no. It’s YOUR data – all of it – and it’s your right to have a copy. Keep your own records.
Hi,
Good for you and your sister. Fortunately, you know the rights that patients have to their medical records.
I am an RHIA and I use to be a Director of the medical records department now called “health information management.”
I have always explained to people that they have a right to their medical records.
I have many illnesses the primary ones being complex regional pain syndrome and FTD which is a terminal degenerative brain disease. My husband and I have been through a long struggle of many years trying to find out what was wrong with me.
I’ve been in situations where the office refused to give me my medical records. I pull out my driver’s license and sometimes I’ve even given them my AHIMA card which proves I’ve been in the medical records business so they can’t fool me.
One thing I did not like about being a director of medical records was that there are certain records that are involved in legal litigation or possible legal litigation and I was not allowed to give the patient their records. But, I’ve always felt strongly about the patient having a right to their medical records and when that happened I would give the patient a short copy of the law in the state where I resided so they knew that they had a right to their records.
This got me in trouble with my adminstrator a few times but he couldn’t fire me because I was telling the truth and it was the law. Also, I did not give out the records.
The other problem that I had was regarding psychiatric records. There are provisions in which psychiatric records cannot be released and I read these provisions. I felt like at one hospital they were abusing this provision by not letting any psychiatric patient see their record because they could always say that the content woud be harmful to them and cause they further distress.
This was often not true and I felt the doctors used it as a way to be able to write what ever they wanted to write about the patient.
Also, I’ve run into the problem in asking doctor’s at their offices for my medical records. They tell me they have a policy not to send it. I go through the it is my right routine and they do things like as you are aware put off copying the record and then when I do obtain the records, I know they have left some things out but I have no way of proving them.
I hope with the rise of the consumer health movement this will change.
Oh for the day when this story is unusual, Alan. Alas, it is not.
I want to zoom in on the last point about having to get angry before records are released. Sadly indeed, that’s too often the case. Over the past 20+ years I’ve had many opportunities to serve as a patient advocate and caregiver for family and non-family members. As a result, I am no longer surprised by how quickly everything seems to get adversarial, especially when critical care is involved. My most fervent hope is that those of us who care about patient-centered and participatory medicine will make this shift in culture happen sooner rather than later.
I saw a cardiologist for 17 years, and did not know that I had an atrial septial aneurysm. After arguing with his assistant about getting a copy of my medical records on at least two occassions, I was finally provided with them…, but at a price. When I went in to the cardiologist for an explanation of the diagnosis, the doctor stated that he didn’t think it was anything to be concerned about. Well that’s great, but I want to know and have a right to know no matter how serious he thinks it is!.
When I stated, “I’ve been coming here for 17years, and I’m just now finding out about this.” As he opened the door of the examining room to leave, he said, “Between now and your next visit, I want you to work on your mental health.” WTH? He is going to label me as crazy because I am an assertive woman who knows her legal rights? Needless to say I fired him!
Misty, you describe a classic paternalistic / disempowering physician, of the old school: “I will know what there is to know; I’ll make the decisions – don’t you worry your poor patient head about this.” And, commonly, if we push, they push back, sometimes explicitly saying “It’s none of your business.”
(Yes, I have a friend whose doctor was palpating her throat in the 1980s. Curious, she asked “What are you doing?” and he said “It’s none of your business what I’m doing”!)
So, good for you for knowing what’s important to you and expressing it. Someday that might save your life.
First – How right you are. These are your records
Second – Nobody will take care of you better than family, no matter how good the doctors and nurses are or how much they care. Family is key. I never will leave my family alone in a hospital…. even with the best team… complications arise and mistakes are made. Generally speaking, many mistakes are stem from poor communication. Staying with your loved one reduces this problem.
Third – Your title is misleading to me. This is not a medical records fiasco. This is a health care team fiasco. By your description it is mainly a poorly communicating team fiasco. Ultimately, honest and open communication is the key.
Finally, I don’t understand why medical records are so darn much of a problem. Honestly, doctors in the hospitals have no real control over them. It is the hospitals that control them. And I don’t think that getting angry about it is helpful. Professional and polite pursuance is always better. I simply “bump it up” to the next level. The people working the front lines generally have some simplistic protocol that they follow. They are usually just doing the best job they can.
Ultimately, I see that the ePatient movement is going to be a great thing for health care. This business of current medical record keeping is suboptimal. Keep up the good work and you will help be the key to fixing this problem. Thank you!
JFS
Hi, this is so wrong, the hospital should not have given the records up. In order to release the records to any family member, the patient needs to authorize the release by signing a release form. This is why EMR has become a fiasco. Anyway, EMR will move forward and I hope that more strict rules are applied to personal health records.
Thanks
Al
Good to see you here, Joe.
Re anger, if I read correctly, all three of these people are saying they only got their records (as required by law) when they DID get angry at staffers.
Re hospital not doc – I see your point, but what about the EKG a year earlier that either never got analyzed or failed to get communicated to the patient?
I’m not looking to cast blame here – that’s not my style – but what I see is that the processes for reliable care delivery are dangerously unreliable, which is a good cause for action. I suppose strictly speaking the EKG itself isn’t part of the medical record *system*, but it sure is information in his file that should have been acted on.
Again, I’m not looking to cast blame – in my speeches I often cite how overloaded clinicians are. I do though want more reliable care delivery, and oversights like this do strike me as potentially disastrous – and thus, as I say, a cause for action.
Thoughts?
The failure to disclose the results of the prior EKG and report to the patient his prior heart attack is inexcusable. At the very least he is entitled to have his records reviewed by a malpractice attorney who in all likelihood (in most states) is required to consult with an MD (in this case a cardiologist). This strikes me as prima facie negligence that resulted in the deterioration of the patient’s health requiring surgery that might otherwise have been unnecessary or less invasive and probably has also resulted in a much poorer prognosis going forward and shortening his life. I am glad he didn’t lose his life as well but make no mistake – he has been damaged through the professional negligence of the hospital and its physicians and staff. The pain, suffering, surgery, aftermath, and medical expenses and possibly shorter life span he incurred as a result are compensable. Most people don’t actually like to sue and the rate of these types of cases has gone down steadily every year. But some cases cry out for it and I think this sounds like one of them. I am not a lawyer by the way but I know something about this area of the law.
Yes, I am indeed saying that it is my ongoing experience that getting angry and, in at least two instances, downright nasty is the only way I got access to records. In one situation I even held medical POA, but had difficulty getting records.
I am not saying this is always the case or that this should be the case. Unfortunately, this adversarial situation will probably persist until healthcare teams act like teams with patients and caregivers as part of the line-up.
(I’m so proud of being able to use a sports metaphor!)
I can relate on so many ways that it would take a book to include it all. In short, I’ve had to fight for my own records multiple times, found lab tests and other information which was either erroneous, unreported, or “misreported/misinterpreted”. Or any combination of those three.
I have a question. I am often cited the 30-day “rule” on gaining my medical records “according to HIPAA” and usually have to wait at least a week. Is this not an area of reform which needs addressed and is it being addressed?
Hi, Meredith. My experience has been the person whom I first see really has no “power” and getting angry with him/her is useless. However, I do get “angry”, but not at that person and in a very quiet but persistent way. Persistence is the key and I persistently insist on seeing someone up the chain of command. Usually I only have to go one or two levels, but I firmly insist I will keep going on up until I get my records. It never hurts to throw in something about “I know I have News10’s number somewhere, and where did I put my attorney’s number?” (Only halfway joking, here! I have used both lines before.)
Robin, yes, HIPAA (1996) says they have 30 days to give you your info, and they can then say “Sorry, we’re not done” and go another 30 days. The law was written when the Web was brand new and EMRs essentially didn’t exist – even bank web sites were pretty new – so it didn’t anticipate what we’d want 14 years later. (Imagine what the world will be like in 2024…)
So yeah, modernizing HIPAA is a common topic of discussion. We the patients are the ones who must make noise about it.
Dave, my question re: HIPAA was more rhetorical than anything. When I point other patients to these stories/blogs, they get lost in the terminology that you and I, and the others posting here have come to use as everyday language. If we want other patients to be active on this bandwagon, we need to phrase things in a way everyone, novice or not, can understand.
That question re: HIPAA is one we address constantly on our support/message boards. We get hit in the face with it all too often. And frankly, legally, no on HAS to give us our records for that period of time. When we get angry, we are really getting angry at legal issues.
No matter the legal “outs” they have, I believe our medical institutions/hospitals/doctors/etc. should ethically give us our records immediately, especially if a) we ask for them and b) if it affects the treatment and/or health of an individual.
Of course, we can also revisit the cost, too, as Regina Holliday only knows too well.
Alan, I should have said earlier that I am so glad your dad had you and your sister to advocate for him. (My daughters live/work in Richmond, btw, and the older one is a senior systems analyst for HIT at VCU/MCV.) I and many other “Cushie” patients travel for best care/treatment/surgery, too. On my blog I have a story about a patient who died from complications of Cushing’s because of an unreported and not-followed-through EKG which showed cardiac involvement: Martha’s Story. Only after her death did her partner discover this.
I believe this is an all too common occurrence. My dad ended up with severe complications of B12 deficiency, now corrected after a horrendous journey and eventual diagnosis by my brother and I (neither of us are doctors) before a doctor finally tested for it. I’m so glad your dad survived to be treated. Give him a hug for me. I hug mine every chance I get.
Hi Robin,
You’re right of course and I never ever give nurses a hard time. I seethe my way up the medical food chain to someone who allegedly has both power and authority to release records. I’ve also been known to bring in someone from the Ombudsman or Patient Advocate office. The Chaplains’ office can also be helpful.
I had a less traumatic, but similarly frustrating time with a medical record transfer. I got copies of my medical records, but sending them to a Dr necessitated driving there and personal delivery.
http://gershater.wordpress.com/2010/01/05/transferring-30-printed-pages-of-medical-records-to-my-doctor/
Alan,
Thank you for sharing the truth about medical records being “held hostage”. Since my husband got cancer six years ago and then an unknown virus that caused damage to his heart, brain and stomach as well as other medical conditions, I’ve gone through many similar situations as you, your father and sister.
We’ve changed tending physicians, hospitals and labs because of either “lost or unavailable” records, x-rays, etc. It’s only because I stood my ground and insisted on getting a copy of all my husband’s records that they miraculously appeared and that he is alive today. On several occasions to hospitals and physician visits, the only records or x-rays available were the ones I carried with me.
Our medical records are rightfully ours. Keep spreading the word! Jonena
If you are taking you hospital ratings from Healthgrades you are being ripped off.Healthgrades is a scam. They are in the business of making money period. they “sell” those high grades to the highet bidder. Just look at their marketing materials aimed ay hospitals and doctors. If you pay, you get a good rating, if not you don’t. They doon’t verify anything. I have found doctors in their database who don’t even practice medicine anymore, the ones they do have, the chances are all of the educational information is wrong. Healthgrades is a RIP OFF!! Steer clear.
Thank you all for all the wonderful comments. The fact that this is such a common story is the scariest thing.
Know your rights and demand your data!
RE: Chloe Taylor’s comments about healthgrades.com
1.) I didn’t pay for the reports. I used the free information which included morbidity rates.
2.) I know very little about how health grades came up with their numbers or rankings. I would be interested in knowing how the information is collected and all the criteria that goes into the scores. As a general principle, I think this sort of information should be very public and transparent.
Chloe, do you have any evidence for your assertions about HealthGrades? I’ve never been persuaded by blanket accusations of “it’s all crooked” based only on suspicion.
Can you give us the names of the doctors in their database who no longer practice? (And why would those doctors still be making those alleged payments if they’re out of business?)
I looked up the Healthgrades reports for Charleston, WV hospitals. Only one does bypass, and it has a better than predicted mortality and performs a large volume of procedures. Chippenham looks like it may be marginally better, but it isn’t a slam dunk.
On the other hand, you imply that you needed the medical record because your father was in urgent need of bypass surgery. I can’t think of any cardiologist who would condone a 300+ mile transport for someone in urgent need of bypass surgery when the patient is already in a competent center.
Bottom line, either your father didn’t have an urgent need for the records to go with him to Richmond, or you and your family endangered him by moving him 300 miles with unstable coronary disease.
I’m glad your father did well. You just haven’t convinced me that it (1) was in his best interest to delay the surgery and take him on a 300 mile trip, or that (2) your sister was justified in throwing a fit in the medical records department demanding that her needs came ahead of the other several hundred patients in the hospital.
Dennis:
Just to clarify a few points:
1) I am not calling into question the competency of the hospital physicians in Charleston, WV. The information from HealthGrades.com represented only a small influence in the decision to transfer. Surgery is a dangerous and scary undertaking for patients, and it is important for patients to be confident and comfortable heading into the OR.
2) At the time of his surgery, the patient was stable, felt fine and was not suffering any symptoms. He was not having a heart attack. He was, however, slated to undergo open heart surgery and he and his family felt more comfortable moving to a hospital that was more familiar, where he perceived that he would get better care and attention. Assuming that the hospital team had a good handle on patient records, providing a copy of a cardiac catheterization CD – or any test results – should have been an easy task.
Your reply seems to indicate that you believe that patients do not have the right to choose his/her hospital. Patients do have decision-making power and the right to exercise choices for their own care.
The unfortunate reality of the situation is that the system is set up to keep the patient from gaining access to their information, to keep the patient ignorant and dependent. I’m not blaming providers specifically; they are rightfully worried about exposure to litigation and staying ahead of the competition.
I am currently trying to gain access to my own medical records from several different sources. I’ll write an entry about this experience too, but as you might guess I’m getting a lot of push back from most providers.
Americans have a right to choose their doctors and have a right to their data (except in special circumstance such as mental health information). Having an advocate can prevent medical error and save your life.
Respectfully,
-Alan
this just seems so wrong.
the medical profession here is so focussed on the bottom line with shareholders and HMOs and insurance companies that they sometimes seem to forget what it’s really all about
I am really hoping that the EHR process is going to makie sure there’s no issue of “custody” of the records because the moment the data is collated for your physician it will also appear in your chosen online EHR provider – be that Dossie, Google Health, Health Vault or others.
The downside is that sometimes understanding the data and corellating it is going to be tough for the general public but that opens up new areas for the online platforms to perform high level interpretation (in partnership with programs like the Mayo Clinic etc) to at least guide a patient to a better understanding of their health and wellness (which surely makes sense for the insurance companies and the healthcare system in the long run?)
Health IT standards are a big part of the problem too. Most health IT format standards are closed, confusing and over-engineered.
I saw this and found it to be on point.
IF AIR TRAVEL WORKED LIKE HEALTH CARE:
http://www.youtube.com/watch?v=5J67xJKpB6c
Sincerely,
Alan
Do I have a right to copies of my medical records and is there a time frame in which they must send them to me? I am frustrated because I’m trying to change doctors and need some immediate medical tests. I prefer for the most part to use alternative doctors whose requests for medical tests are not covered by insurance so I have to go to an “approved” md for an unecessary appt. to get tests ordered. What a wasteful system we have.
Yes, you are currently entitled to a copy of your records. If anyone gives you a hard time, ask for their manager and tell them you’ll report them for a HIPAA violation.
But first I suggest saying courteously that you know you’re entitled, under HIPAA, and you insist on getting them.
Two problems: they’re allowed to take a MONTH to deliver it (sometimes more), and they can charge you whatever state law allows. That can be a lot. But many people have gotten waivers by begging and pleading.