Instead Of Centralized Healthcare Records, Why Not Let People Store And Manage Their Own?

from the now-there's-an-idea dept

Last month, we talked about the balancing act between making your medical records more accessible to health professionals, but at the same time keeping them private. There are many attempts at making medical records electronic and centralizing them — which is great for medical professionals to be able to access when needed, but raises questions about how secure they really are. At the other end of the spectrum, though, is the idea of more distributed health records. For example, it’s increasingly popular for people to create and store their own personal medical records, which they can let a medical professional access with permission, but which also lets the person have much more control over the records. There’s obviously some concern about the idea of giving too much control to the individual, but it seems like perhaps there’s a better middle ground here where individuals have more control both over what’s available in their medical records and who can access them, rather than trusting the entire operation to the healthcare industry. If patients could not only manage their own records (with certain limitations), but also be kept aware of who is accessing their records, there’s a lower probability of misuse. Similar to the ideas of sousveillance or David Brin’s Transparent Society, giving more control to end users to watch who’s watching their info could prevent some of the worst abuses of electronically available health records.

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Comments on “Instead Of Centralized Healthcare Records, Why Not Let People Store And Manage Their Own?”

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Philip says:

Not always a good idea

I happen to know somebody that have actually altered their medical records by removing pages out of them. Then you’re looking at situations where people would add things to them to gain access to prescriptions, etc.

I think letting people manage their own records would be a bad idea cause of this. The chance of false data would greatly increase.

chris (profile) says:

what your medical records say about you

there was an episode of “seinfeld” where elaine was labeled as a difficult patient in her medical records and the staff at her doctor’s office was very dismissive of her.

she tried to get the medical records to see what was recorded in them by impersonating a nurse. she fialed and then had to enlist kramer’s help as well. both attempts fail and the results are recorded in her and kramer’s medical records. elaine eventually changes doctors, but her record of difficulties follows her with her altered medical records.

this is also an issue with military medical records. a record of your vaccines is kept in a file as part of your medical records to show what vaccines you have received (typhoid, yellow fever, small pox, plague 1,2,3) if you have a problem of some sort with a medic, those records will often disappear and you will have to repeat the entire battery of injections again and again.

in vietnam, an annotaion of “FWC” on your medical records (F**cked With Corpsman) meant difficulty at every interraction with medical staff. it was something akin to the scarlett letter, as medical screenings were often critical to the process of changing duty stations and trasitioning out of the military.

THE DNC says:

Re: what your medical records say about you

You sound like you need your binky, Chris. Want a hug?

This is what us democrats have been pushing for, for the longest time with health care. There’s no reason anyone should be in charge of any aspect of their lives. It’s our job (as politicians) to govern and control everything they do.

Please help us achieve this FOR YOU! This is all in your best interest, and it’s best if you realize that now, instead of later. Please vote Democrat and vote for Centralized and State Run health care! Thanks!

Tyshaun says:

Re: Re: what your medical records say about you

You sound like you need your binky, Chris. Want a hug?

This is what us democrats have been pushing for, for the longest time with health care. There’s no reason anyone should be in charge of any aspect of their lives. It’s our job (as politicians) to govern and control everything they do.

Please help us achieve this FOR YOU! This is all in your best interest, and it’s best if you realize that now, instead of later. Please vote Democrat and vote for Centralized and State Run health care! Thanks!

Yes, one of the downsides of centralizing healthcare is the fact that records become accessible to more people. However, recently enacted regulations such as HIPAA were put in place specifically to deal with this problem.

On a more general point, the United States is one of the few industrialized countries that don’t have some form of guaranteed healtcare coverage for all of its citizens (aside from the emergency room in which all states have laws that say that the ER is responsible for treating you just enough to stabilize your condition). Basically, the message being sent to US citizens is “We have a great healthcare system, if you can afford it, if not, oh well”. Quite frankly I would take a bit of “potential” intrusion into my medical history for the peace of mind of knowing that no matter what my current employment status is, I will receive the best care available if I become sick. I like a quote Tony Blair once said when asked about the high cost of state run healthcare in Great Britain, “We regard access to quality healthcare for all Britains to be fundamental to the job of government. Anything else we do pales in comparison to our responsibility to guarantee the health of our people”. Adequate healthcare should be a right for all, not a privilege for the wealthy.

If that’s what the Democrats are promising, where do I sign? What’s the alternative. We continue to let healthcare costs spiral out of control to the point where no one but the rich can afford anything but a simple office visit? Stand by while more and more companies buy bargain basement policies to maintain compliance under the law, but providing little or no benefit to their employees? Is this what you are proposing?

Getting of my soap box now…

Anand says:

Safe medical records

I would think we can use the technology to have more secure access to medical records with centralized database in place. I think this idea would be lot better.

When a person calls a med professional, the application should take two passwords 1. the medical professional himself and 2. the end user should enter the pin on the phone and the system should be able to get the pin and give access to both the medical professional as well as the end user.

If he/she goes in person obviously user can enter the pin in med professional’s comp.

In this way the users record is being accessed only in his/her knowledge.

Rich Kulawiec says:

Not a good idea

[ Before I get started: Anand, it’s a nice thought, but renders the
records inaccessible if the person is unconscious. Not good. ]

The problem is that millions upon millions of people will then
access these records from insecure or insecurable computers.
(See recent discussions in re the apparent number of zombie’d
Windows boxes out there; NYT quotes an estimate of 70M,
which I think is about half an order of magnitude too low.)

Oh, not that the current keepers of such records have a
decent track record: they don’t. But at least the scope
of the problem is relatively small. If it’s increased to
(say) 200M people, then the problem will be completely
out of hand.

Anonymous Coward says:

Can you imagine letting people in control of their own medical records. I work for the NHS, the UK’s main/only health providor. They have a single database, (working on it) with all patient information that is accessible by All Medical professions at the touch of a button. Mind you they cost the people a lot of money… But then again they are free, and wont let anyone suffer!!!

Naieve dumbass says:

Why not

Take what Anand was saying and modify it so that medical professionals/you can VIEW the information with your pass, but both are required to modify the information. In the event you die or are rendered a vegetable, there should be a backup system that uses biometrics to verify your presence at a medical history changing. Then again…if you get ground up in a wood chipper…uhhh…I guess you’d need to code it to your DNA.

Doc Rings says:

My patients can’t even remember what medicine they take. The majority just know they take a “blue pill” in the morning and “some eyedrop” at bedtime.
My staff calls them to remind them to bring in their pill bottles, and copies of notes from other providers: probably only 15% remember to do such.

It sounds great on the surface, but very few people have the where-withall to actually take ownership of their medical care beyond just “showing up” for the appointment.

Now, if we can just get all the dozens of EMR’s to talk to each other so one doctor can know what the others are doing/prescribing.

Doc Rings

GeoPro says:

Medical records

The most important aspect of digital medical records is to allow the compilation of statisitical data when prescriptions are issued by the Doctor. The recently discovered HRT relationship with breast cancer is an example of a process taking too long using conventional methods and thus causing untold misery and suffering. We need to strive for a system that improves our health and flags bad practices and prescriptions quickly.

RareButSeriousSideEffects says:

Digital Sigs

Doctors who issue prescriptions have DEA numbers. Why couldn’t some entity (corporation, foundation, governmental body, whatever) issue “Healthcare Record Creator” digital signatures to healthcare professionals for the purpose of validating entries?

Files or records in your database would ideally be digitally signed with both the provider’s sig and the patient’s.

Now, the patient can put whatever he likes in his own database — the self-added/edited records just aren’t official.

Rich Kulawiec says:

what your medical records say about you

I concur with Tyshaun; it’s appalling that a nation equipped
with such immense resources chooses not to expend them on
the provision of basic necessities — two of which are medical
care and education. (Actually, the latter is more of an investment:
the very best one that it’s possible for a nation to make.)

Our failure to do this has allowed the costs of both to reach
alarming levels, denied health to many, and impoverished the
intellectual base.

Strength does not come from fancy new weapon systems built
with 1000X markup by corrupt contractors; strength comes from
having healthy, smart citizens. It’s there that we should spend
our treasure — on our people.

However…the last serious, or perhaps semi-serious attempt to
move in this direction was derailed over a decade ago. Not
surprising: there’s a lot of money in the insurance industry,
which means a lot of lobbyists and an enormous amount of
influence/campaign contributions. I was quite disappointed
that those pushing for it at the time backed off — I’d rather hoped
they had the stones to ram it through. We shall see if another
attempt is made, and if those backing it are willing to put their
own political careers on the line to make it happen.

Personally, I rather like the thought of the greedy, selfish
executives of (say) Blue Cross standing in the unemployment
line. It is a fate they richly deserve.

Rich Kulawiec says:

Intelligent article

Unfortunately, no, Joe, security is NOT enhanced with this model
if the endpoints (the systems that the owners are using to access the
information) are compromised.

And they’re comprised by the millions upon millions; a NYT article
the other day provided an estimate of 70M zombie’d Windows boxes;
some of us think the real number is about 5X that.

Whatever that number is (a) it’s growing every day (b) there is
nothing on the horizon to indicate that it’ll be fixed and (c) the
new owners of those boxes are more than capable of effectively
harvesting the medical records (or the authorization credentials
which provide access to those records) off every single on of them.

So as poor a track record as the medical records holders have,
it’s still much better than what we would see if we permitted
everyone out there to “manage their own”.

Kevin (user link) says:

Personal Medical Records Management

Many of you make very valid points concerning these issues. I work with a company that has a personal medical records managenent service designed forthe individual. The company is called MedeFile. In brief, MedeFile is an electronic medical records management service that collects, digitizes, stores, and organizes all of our member’s ACTUAL medical records. MedeFile gives you the member, the ability to access your complete medical history 24 hours a day, 7 days a week, from virtually anywhere in the world. In addition, we provide each full MedeFile member with a MedeDrive. The MedeDrive is a portable USB device that works with Windows based PC’s. This device simply plugs in to a USB port and instantly auto loads that member’s vital emergency information (Allergies, Medications, Medical Alerts, Emergency Contacts, etc). The MedeDrive also has a password protected area that contains all of that member’s ACTUAL medical records as well. The system also provides for the storage of Advanced Directives (living Wills, DNR’s, Health Care Proxies) The MedeDrive does NOT require any internet connection for viewing, and can be updated anytime with no additional charges. We have been featured on various news segments with regard to the devastating Hurricanes we have seen in the recent years. A very clear alternative to a national database since each member is in complete control of their own records.

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