The issue of making available to patients information which IS electronic is a separate issue, and your example is telling. You will find similar barriers elsewhere but some places do that sort of thing very well. There are no HIPAA issues around giving a patient a paper copy of electronic data that you have on their health information, but it is VERY dangerous to release electronic records, especially if you make a mistake. With the new HITECH law, if a nurse gives John A. Smith all electronic health information for John A.W. Smith by accident, then that nurse is PERSONALLY liable for the breach, which means that she could lose her job. Many institutions would prefer to stick with paper than be faced with the liability issues inherent in electronic patient records.

Sad but true. Until the regulatory environment (read: security and privacy laws) are relaxed, this will continue to be a significant barrier to adoption of electronic health systems.

I had to go back and get the record the next day. I had asked a week before discharge for the complete medical record. I was quoted 73 cents a page and a 21 day rate. This was on a Friday. I checked back on Saturday to see if any progress had been made. The weekend clerk could not find my request. I pointed to the pile of paper where I had seen it placed. She said it wasn’t there and to come back during the week. I came back on Monday. The paper request was still exactly where it had been left on Friday. I filed a complaint with the supervisor for the lack of action on the part of the staff.

My point is this. The data was there. It wasn’t that hard to print out. If you wanted to save paper, I bet it could have been emailed or burned to a disk or zip. We did not have access to that data. It would have made a difference. There is no one who will comb through reports like a concerned caregiver. I found 13 major mistakes when I went through it in a six hour time span. I do not have a degree in medicine, but I am intelligent and caring.

Who do think reads all this data? My husband’s record is over 200 pages. I asked that question to a lot of nurses. The answer was pretty uniform.

No one, honey. No one.

The failure rate was higher at some doctors’ offices, as high as 26 percent at one office. Few medical practices had explicit methods for how to tell patients, leaving each doctor to come up with a system. In some offices, patients were told if they didn’t hear anything, they could assume their test results were normal.”

I’m not sure I understand your first question. The duplication issue is not really a problem – once the data is electronic it can be copied on demand. There is a separate issue of TAKING that data into another system which does incomplete/incorrect translations upon it…

You’re absolutely right about software redesign, but one of the challenges to making this health data available is the HIPAA act. As soon as you expose patient data in an electronic system you are legally liable. I’ll give an example – at our institution, doctors want to get away from having their primary care patients fill in paper forms. The perfect solution would involve a tablet PC that the patient could directly enter the information into. Issues with this approach:

- Who maintains the patient login information? Who resets passwords when the patient forgets them? Who is responsible if the patient shares that login or it is otherwise compromised?

- If the tablet PC is lost or stolen, the institution is liable for any patient information lost. This means the content of the machine should be encrypted, which means an expensive software encryption-solution. What happens when the nurses forget the password to that and the hard drive becomes useless?

- A tablet PC operates over a wireless network. There are SERIOUS security risks in transmitted patient information over a wireless network.

- The quality of data you get when a patient enters the information directly is quite low (there is much research in the literature on this topic). The current model of having a patient fill something out on paper, having a nurse or other clinical staff review it with the patient, and then allowing the data entry to happen later tends to yield more correct (and hence more USEFUL) data quality and completeness.

And this is just the beginning! Say a doctor’s office wants to implement this solution. Lets look at costs:

- Tablet PCs cost at least $2000 each and you will need several, plus some spares. Say $10,000-$20,000 just for the equipment.

- The data capture mechanism has to be put in place to HOUSE this data. MS Access databases are obviously not good enough. If you have an existing EMR then you’ll need to build a collection mechanism or you’ll have to buy some third-party product anew. Cost could be enormous.

- If you don’t have a wireless network, you’ll need to install one and ensure that if you are ever audited you can prove that it is HIPAA compliant.

Again, this is just the tip of the iceberg. We haven’t even addressed the staffing issues (who enters old data? ensures that the new stuff is accurate?). There are serious serious obstacles to address before we can even worry about patients accessing their own data. Many institutions would be TERRIFIED to expose patient data directly through a patient portal due to the inherent HIPAA-related risks that this involves…

And related to SMS: my point was that most of the iranian protesters have been using SMS as the end-product. That is SMS phone-to-phone, not SMS to facebook or SMS to twitter. Although SMS messages and data-content agnostic, PHONES are not data-agnostic. :)

an interesting comment.

Don’t you think that systems that produce digital records will be different if they are doctor-centric or if they have to produce copies of the record, on demand and at no cost?

It is because most of these systems have not been implemented that we have a responsibility to make sure that all future implementations are based on the rights we address in the Declaration. As we know, redesigning systems at a later stage becomes often impossible and always expensive. If my right to all my health data is a basic right, any design of health data recording and transmitting systems must take this right into account, as a fundamental design element.

Finally SMS messages are just another type of data element. Computers & routers don’t care what bits transmit. They are essentially data agnostic.

As far as access to medical records, when most of the medical information in the country is still on paper, insisting upon access to electronic data is putting the cart before the horse. The vast majority of medical/treatment/outcome data is not even stored in any electronic system but rather in paper files locked in a drawer in your doctor’s office. Lets worry about getting the stuff electronic before we worry about who can access it and when. :)