Should patients own their medical records?

in Patient | 12 responses

Personal health records have been in the news lately, with the focus on how inaccurate they can be.

Should patients have complete access to medical records at their physician’s office or hospital?

Primary care doctor Rob Lamberts offers some thoughts on the subject. There are some parts of the record that patients shouldn’t read. “What if someone comes into the office with a child and I have some suspicions about the family situation?” he writes. “I certainly don’t want the patients having access to this.”

A recent NEJM article suggested two paths where PHRs could gain more prominence. The first would be the web-based models like Google Health or Microsoft HealthVault. The second is an extension of current electronic medical record systems used by doctors, offering limited access to patient’s charts. Diagnoses, lab results and diagnostic tests, for instance. It is this last option that will probably take hold.

So, in the end, should patients have complete access? Probably not. A lot of the medical chart is simply not relevant to a patient’s well-being.

“Somehow there needs to be a way to parse out what is important and what is not,” Dr. Rob concludes.

Comments

Joseph Sucher, MD FACS
I point your readers to some other references of note this last year in JAMIA.
Early Experiences with Personal Health Records – John D. Halamka, MD, Kenneth D. Mandl, MD, MPH and Paul C. Tang, MDand
Whose Personal Control? Creating Private, Personally Controlled Health Records for Pediatric and Adolescent Patients – Fabienne C. Bourgeois, MD, MPH, Patrick L. Taylor, JD, S. Jean Emans, MD, Daniel J. Nigrin, MD, MS and Kenneth D. Mandl, MD, MPHJFS
Irene Gabashvili
I believe that patients should have full access to their records, if they want to. Child abuse reports should be separate, but how can the abusers take advantage of this information anyway?
Shared control of medical information needs careful consideration, I agree with this point. At least 60% of health consumers would not want to be the main responsible party for their ‘from cradle to grave’ records, somebody’s gotta help them.
Anonymous
If the patient owns them, they are no longer medical documents.
Either they’re written for the sake of the treatment (and for billing purposes, these days) or they’re written to keep people with unreasonable demands happy.
I’ve never met anyone who wanted to read their own medical records that didn’t want them changed as soon as they saw them.
What is the point of creating the data in the first place if the physician’s obsevations, impressions and treatment plans can be altered?
Anonymous
I’ll leave who “owns” the records to the lawyers. Anyone with a serious chronic or complicated situation is a fool not to keep copies of records and test results on their own.
If the Doctor wants the leeway to write notes and reminders to himself about you then fine – let those be private.
But knowing what your critical results are this time, last time and a year ago as well as keeping tabs on how different drugs and treatments went can help a patient spot errors and avoid mishaps within the medical system.
You could fill this blog up with accounts from people who have stories about mishaps they’ve narrowly avoided because they got their records/results and had questions about what they saw.
Anonymous
First, HIPAA requires access to all medical records. The arguments that there some things a patient “shouldn’t see” are therefore totally besides the point.
Second, the patient pays for the creation of these records. They should, absent a quirkiness in our law, belong to him or her.
Thirds, as previous commenters point out, doctors often forget/ miss things. The motivated patient should have the tools to check up on the doctor.
John
HIPAA is irrelevant to this issue. Access to copies of medical records was required and was regular practice before that not-altogether-useful legislation was passed.
The patient (or rather the patient’s insurer) pays for services, or at least they are supposed to. The records are created by the professional and if you want to be correct, are paid for by the professional, not the patient. There isn’t a charge paid for “record creation.” Authorship of the record is the professional’s as well. The records are property of the professional; access is granted under the law to patients to copies of their record–not to possession of the original–and in most jurisdictions, it is lawful and ethical for the professional practice to levy charges for making those copies available, within certain limits. Patients have a right to obtain a copy of their record as long as they pay for the copies. They do not have a right to the records free of charge, HIPAA or no HIPAA.
Patients have all kinds of motivations, some benign and constructive, others not so much so. If a patient wants to get copies of their records, that is fine, but that does not extend to a right to amend the professional’s findings or recommendations or to change the record. If a patient wants to object in writing to something said in a record and have that objection included in the record, my understanding is that is allowed by law in many places, but that does not mean the same thing as changing what was written in the record by someone else. Doing that would impeach the entire record.
Anonymous
Hey John,
Wrong re: records. The practice varied from state to state, with some states allowing access, others not. HIPAA (the one good thing it did) required patient access on a federal basis.
BTW, HIPAA also requires amendment by the the patient of the record–although the healthcare provider can refuse and this leads to a record stating the patient’s objection.
And, thank you for providing the usually BS about why the records don’t belong to the patient. Yes, I know that’s what most doctors say, but they’re wrong. An accountant prepared my taxes and I have a right to a copy of the return. Medical records are simply work product–but I admit that’s just my view.
Let’s hope google records take hold–that puts access in the control of the patient, who could presumably lock out his own doctor, if he or she decided the doctor’s services were no longer wanted/ necessary.
Patients pay; patients should rule.
John
NoName 11:54/ 8:24:
You might think it the usual doctor “BS” whenever the facts and reality disagree with you. Your privilege, your reality. Sorry, the rest of the world doesn’t agree.
But I’ll humor you. Suppose the patient doesn’t pay. Suppose they are a deadbeat. Have they also “paid” for the records? And if they haven’t, using your logic, can we say they have no right to have them?
And you conveniently choose to confuse access with ownership; they aren’t the same. You might be allowed have a copy of your tax return from your accountant (unless you didn’t pay his bill; the law probably doesn’t mandate he give them to you if you are a deadbeat, unlike a doctor’s records) and having a copy is of course not the same as removing from his control all records of the professional visit, something I think you feel is your right to do. Well, it isn’t, whether you paid or not.
Your POV is common, toxic self-entitlement and the notion that patient rights extends to having and doing whatever you please. Sorry it doesn’t exactly work that way.
Anonymous
An accountant prepared my taxes and I have a right to a copy of the return.
Right… just ask your accountant for a copy of your work papers, rather than the final product you purchased. See how far you get then.
BTW, ownership of medical records is clearly dealt with in most state laws — it is owned by the physician.
Anonymous
Why are doctors so defensive and hostile towards consumer rights?
While we all know that state law vests ownership in records with doctors, that hardly settles the issue of whether that is right. I say it is not right. You should own your medical records because they are of value to you and you paid for them. It’s really that simple.
Regardless, let us hope that this whole debate become moot as records move to electronic form, and individuals can carry their records around on a thumb drive or bar whomever from looking at them with proper instructions to the server.
monitor.evaluator
In the UK there is a huge amount of legislation around information governance and data protection. As IT lead for our Partnership I've delved into this.
Here, the information is the property of the individual and we, as physicians are responsible for storing it securely, maintaining its accuracy, keeping an appropriate amount of information for an appropriate length of time and being able to justify the reasons for holding the information we do.
The legislation also sets out the individuals rights to access that information, including appropriate fees for accessing it.
My feeling is that this is a good movement, certainly as a medical student I remember seeing occasional abbreviations and certainly in some of our older notes there are what would now be classed as derogatory statements. This may reduce that sort of behaviour.
The UK Dept of Health is moving towards a centrally held medical record (on the "Spine"), which clinicians can access using smart-cards and passwords. You can see a GP in London on one day (who has access to you whole record) and then see a Senior House Officer (US Resident?) in A&E in Leeds the next (who also has access to your whole record) – this is potentially a great idea, but the security issues concern anal people like me. The system is apparently secure, but how a lock with more than 10000 keys can be considered secure is beyond me.
This system removes the need for separate usb drives which can be lost, the NHS number has been validated as being unique to each patient (therefore it would be difficult to raise ghost-patients) and now (certainly in our practice) the majority of prescriptions are being sent electronically, so we may actually be able to find out just how many prescriptions are never collected (anecdotally has been quoted as being 1/3rd).
Anonymous
Having dealt with our large local clinic’s Health Information Services office on this topic, I can add from experience that (1) yes, at least in this state, they will add a statement from the patient if you request (I did not suggest amending the record itself but assume that would not be allowed, and I have no problem with that, nor do I have any problem with doctors “owning” their own records); (2) at least in this case, the clinic keeps separate “medical records” and “business records”. While the patient can see and pay to have copies of the first, they are not allowed to see the “business record”, which, per the risk management JD, would contain any potentially sensitive information entered by the physician, staff, or administration concerning their interactions with the patient.
In short, this subject is a non-issue. There apparently are legally enforceable ways to keep patients from seeing anything you don’t wish them to see. Hope you use that power wisely.

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