Should Patients Have Online Access to Their Medical Records?
Should all patients be given online access to their medical records? The British healthcare system is currently considering such a possibility. With electronic medical records progressively becoming the norm throughout the medical world, this access would be feasible but would it be wise? Certainly, there would be advantages to the patient who would readily see the written result of the office visit and could then, if necessary, confront the physician with corrections, additions and questions and in a timely fashion. But what are the negatives to such an idea beyond potential loss of patient privacy due to inappropriate or illegal computer access? For example, would this mean that the medical record would have to be written in words understandable by any patient rather than in more concise and professionally understandable terminology and thus perhaps degrade professional communication? Would such access more easily give rise to patients starting malpractice actions due to misunderstandings of what was written to the record? Could patient's be pressured by others (insurance companies or employers as examples) into providing access to the electronic records since they would be more readily available? What do you think? ..Maurice.
posted by Maurice Bernstein, M.D. @ 8:16:00 PM
13 comments
13 Comments:
To give some context to my comments:
1. I'm a nurse
2. I live and work in the UK
I wonder whether as clinical professionals we actually worry too much about sharing. Arguments against sharing often centre on patient's misunderstanding what is written and on security.
On the first issue all communication (between clinicians and patients) can, I suggest, be improved by plain English. Clinical terms are better understood by the general population than we may think. They can certainly still be used. But it's the expressions and context of records that needs to be clearer. We can all work on that and improve it.
The second issue of security is well founded. Records go missing far too frequently in both their current guises of paper and eRecords. There have been notable cases in the US and here in the UK. Patients (and I’m one too) are rightly concerned about security – inappropriate access. Legitimate access levels can be defined and set within applications and systems. This provides a level of security and, if well understood both within the medical and legal professions and by patients, may well give rise to increased confidence that online access to records can proceed.
As clinicians we shouldn’t be afraid of records being accessible by patients. We should be concerned about representing and communicating our patient’s conditions, treatment and progress clearly. This will assist inter-professional relations and lead to increased patient and family centred care.
Let me end with selected quotes from C Pyper, J Amery, M Watson and C Crook, Patients’ experiences when accessing their on-line electronic patient records in primary care, British Journal of General Practice, January 2004:
On usefulness:
‘On the whole, I think it would prove excellent in building relationships between health professionals and patients.’ (Focus group attender.)
On understanding:
‘Medical jargon could lead to misunderstanding and cause worry.’ (Focus group attender.)
On accuracy:
‘I would like to see my record from time to time to check, especially as another person with the same name is registered here.’ (User 52.)
I have been very selective. But we should build on usefulness, improve understanding and raise accuracy. And provide patients with access to their records.
Julian Winn MCIM, DipM, RN, CSSGB
As someone who works intimately with medical records and also has plenty of experience as a patient, some thoughts on access: Unrestricted access of all to their medical records is a bad idea for many reasons. Misunderstandings would be rampant; as educated as many patients are these days, medicine is still a highly specialized discipline that uses complicated language and concepts that would be misunderstood by a not insignificant proportion of the patient population. This would lead potentially to misunderstandings and hassles for providers in having to explain themselves constantly at its best, and increased rates of litigation at its worst.
Compromise would be the best solution; don't completely deny access to records (they're not supposed to be shrouded in secrecy after all) but help patients to understand what it is they're looking at when they see a litany of test results, for example. Some kinds of information should still be kept out of most patients' hands, as it would cause more harm than good for them to see it and would make practitioners less honest in their documentation. (Counseling notes come to mind; operative reports as well.)
More thoughts: It also depends on the patient; are they a person who knows their physician well enough to keep the information in context? Are they educated enough to understand the information without either freaking out or just missing its intent or content completely? And if they are, more thought has to be put into what's documented. Careful, considered access is what I'm suggesting.
Guys (not the person from the UK), HIPAA already guarantees patients access to their records. Whether or not they are educated, etc. - all they have to do is request them, and they legally must be provided, with very very limited exceptions. The only difference here is if they would be available electronically rather than in paper form.
Just trying to make it inconvenient for them, because patients are too "dumb" to read them, or it might inconvenience the physician to have to explain something is not a good reason in my opinion.
Honestly, I'm all for it. As one wise nurse said re. lab results - "They're not a secret".
Sure, security is an issue - but we manage to have banking online, and many other important things - I'm sure it could be managed for medical records.
As far as changing the form of the records to not use medical jargon - there I say no. Again, patients can have their records now if they want, they haven't been changed so far. If patients want to read the records, they can use that same internet to look up the jargon. If there's something they really want to know and can't figure out, they can ask the physician - if they don't understand something about their condition, they should do so anyway.
The paternalistic way of practicing medicine is fast going out of style. And patients may turn out to be smarter than you think.
TAM
TAM,
As I suggested, it's all about context. There's no reason for most people to have complete, unfettered access to their medical records, whether guaranteed by law or not. There's certainly nothing wrong with requesting things like test results or other pertinent information that's fairly straightforward. Problems arise when there's misunderstanding that could potentially lead to litigation or cause harm to the doctor-patient relationship. I was not suggesting people are too "dumb" to understand the contents of a record generally, but not everyone has the necessary background for the information to be useful to them. That's all I was saying.
thecatsmeow:
"There's no reason for most people to have complete, unfettered access to their medical records, whether guaranteed by law or not."
????
The reason is that it IS guaranted by law. Doctors are not above the law.
And a second reason is that they are adults, and they want to (and have the legal right).
I'm sorry, I honestly don't understand your statement.
Sure, some people might misunderstand things. Sure, some people might not understand some of their records at all. But - it is their legal right. You can't take that away.
TAM
Wow, you're worried about litigation??? Let me ell you that it happens for something. Many patients don't sue for fun: sometimes they are fed up of being ignored, humiliated and even harmed by the very caregivers that ought to heal and protect them.
I know, I know, you oppose and disapprove of criminal lawsuits or revocation of licenses (Gawd forbid) even when a healthcare worked has done something as morally abhorrent as sexually assaulting or intentionally injuring or murdering a patient, right?
Dr. B,
As the astute comments of Anonymous #2 point out, because of the HIPAA law in the US, patients are allowed unfettered access to their medical records, period--PERIOD. Thus, the only question about electronic access involves technical issues involving security. There's no real "bioethics" issue here per se as the issue of the right of patients to see their records has been settled already, and definitively so.
A reader of this blog who was not familiar with HIPAA would therefore come away with a profoundly mistaken view of the current situation in the US based on your hypothetical questions. You ask, “for example, would this mean that the medical record would have to be written in words understandable by any patient rather than in the more concise and professionally understandable terminology and thus perhaps degrade professional communication?” This question implies that we’re entering uncharted territory as a profession. But HIPAA was passed in 1996, so this isn’t a new issue.
As you are aware, I’m a follower and a fan, but I think you’ve taken one headline out of context and tried to gin up a controversy where none currently exists (at least in the US). Patients have a right to see their charts. Your post, in content that is remarkably misleading, suggests otherwise.
Best, Billy
Billy, I wanted to bring up a more generic issue regarding a patient's immediate access to his or her medical records and not necessarily within the United States but elsewhere such as in Great Britain as related in the news article. Yes, in the U.S. we have HIPAA regulations but the details of patient access to them is set by various state laws. For example, in California mental health records can be withheld from the patient if the physician finds that release would cause the patient further mental harm. Also the number of days of permitted delay for the doctor's office to send a paper copy of a record to the patient may vary with state regulations.
The question can arise whether a patient's virtual "instant access" via home computer can lead to ambiguity and confusion reading data in the chart which may be early, premature conclusions by the physician whereas if the chart was obtained at a later date after request such as a week or ten days after a request (as is currently often the case) the information would have been updated and perhaps more valid.
In my opinion, there is far lesser benefit to a patient to receive an "instant" copy of the medical chart compared with the physician taking time during an office visit to explain the clinical situation to the patient and taking time to answer the patient's questions and concerns. Never will a medical record simulate such a doctor-patient conversation. And, perhaps you have noticed.. what does the electronic medical record system do? The doctor sits typing in front of the patient without much listening or talking.
If the goal of electronic medical records is to make medical care more efficient, of more value and less expensive, I would think that changing the system to allow the physician more time to communicate with the patient should also be of value.
..Maurice.
It appears from these responses that Dr. Bernstein is the only reasonably rational one commenting. I stand by my belief that just because something is guaranteed by law, doesn't mean it's appropriate for every situation. And HIPAA does NOT guarantee unfettered, unrestricted access to medical records across all situations.
Maria, what's with the sarcastic tone? I was not suggesting that there aren't occasions when litigation may be appropriate. We, as a culture, are too quick to jump to litigation, and unrestricted access to medical records would have the potential to increase it. That's all I was suggesting.
TAM,
I was also not suggesting that physicians are "above the law", either. No matter what the law says, I am still of the belief that unrestricted access without context could be harmful in some situations. What benefit is it to someone (most of the time) to have their entire record, anyhow? Is this just about "the law says I can have it, so I want it"? That seems to come from a place a lot less rational than your average adult would be.
thecatsmeow,
That you believe patients should not have unrestricted access to their records is, quite frankly, irrelevant. As TAM & Billy Rubin so clearly pointed out, with extremely limited exceptions, a patient in the U.S., by law, has the right to access their complete medical records.
Since you challenge the rationality of others that have posted here because they don't agree with you, let me throw it back at you. I believe that providers who don't think patients should have complete access to their own medical records do so for one of two reasons:
1.They have an irrational fear of "losing control" of the provider/patient relationship by not being able to be the gatekeeper to what the patient sees.
2. They have something to hide.
Dr. B,
Back to the original topic, I believe that as implementation of EHR's progresses, it will eventually lead to online access for patients to their records. In fact, some of this already exists. With the health system I belong to, I have online access to my lab test results, office visit summaries and prescription medication records, among other things. Integrated email communications with the provider's office is also part of that, and can be very effective and efficient when used properly. As more of the information becomes digitized, more seems to become available.
With the use of proper https protocols and other security measures, reasonable security of the data can be assured.
Whether the pt's medical info is available in electronic form seems almost irrelevant, when so many people within the health care system continue to believe that pts should not be allowed to see "too much" information, or that it might somehow be "harmful" or contain specialized language they won't understand.
And I genuinely don't understand the mindset that pts don't need the info. Really? How does it help me be a better pt when I'm left in ignorance of details? How am I supposed to be responsible for my health when the only info being shared is the bare minimum?
With all due respect, this is a form of arrogance. It's not your place to decide what pts should be allowed to see. The law presumes we have a right to the information, period.
If it forces clinicians to use plain language and avoid gratuitously judgmental comments in the record, I don't see that as a bad thing.
For those worried about litigation, consider this: The best estimate is that 9 out of 10 pts experiencing an adverse event do not sue. Maybe they're just not litigious - or maybe they don't sue because they've never been told what happened, hence are unaware they might have a case. Thinking you can lie to pts while burying the truth in a medical record they're not allowed to see is despicable.
It's not about the EMR. It's a power struggle over information and who has control.
- the crabby skeptic
I would have replied to thecatsmeow - but others have done so more eloquently can I could have. Let me just say I entirely agree with those responses.
Dr. Bernstein - re. your thinking a delay is more appropriate - I cannot agree with you. If your conclusions are not for sure, just say so in the chart. Most of us can understand that. Furthermore, trying to reach a doctor on the phone can be practically impossible. A patient may not be able to get an appointment to discuss things, or at least not anytime soon, and the worry of the unknown while having to wait is horrible. We are adults, we can read records, and then ask if there are still questions. I do agree if things are uncertain, it would be best to be very clear about that.
You say "Never will a medical record simulate such a doctor-patient conversation". Here again, I must respectfully disagree with you. Patients can read records, test results, and have the time to do possibly do a little research and come up with questions they want to ask. It can help them be much better prepared for an appointment. Often, if given a bunch of news by a physician, the patient is struggling to take it all in, perhaps in an emotional state, and only thinks of issues and questions once the appointment is over.
Some doctors, perhaps even in a kind way, to want to "take care of" us perhaps a bit more than some of us, myself anyway, want to be taken care of. I want a partner, not a parent. If someone does want their physician to take more of a paternalistic role, they can do so. They don't have to look at the records. But those of us who want a more active role have the right to - why not make it as easy as possible, using today's technology, rather than using technicalities in the law to slow it down.
Most physicians offices that I know will provide tests as soon as they are back, and records very quickly - as even if within the law, it irritates patients to wait a long time - and honestly, feels disrespectful.
As an aside, Mayo Clinic has electronic records with instant acceses to the patients. Lab results are available on their system even before the patient has seen the ordering physician again. Physician notes are also available immediately, as soon as the physician has reviewed them for accuracy (same day generally).
TAM
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