Dear Patient---I Only Have Some of Your Health Record.

Most patients believe that once they grant permission that a health care provider has access to their full health history. In fact, what is shared is limited in many ways. Jack Lewin and I had our Commentary on Interoperability and the need for the full patient record published in StatNews.  

Some medical records are very lengthy and go back decades. Is all that information really necessary? It depends on the situation. One reader from Norway shared their story.

"This is interesting, since I recently witnessed how lack of available medical records may change a planned surgical procedure just minutes before an operation.

Norway has less inhabitants than Manhattan, but the principle of making medical records available to all medical health providers, is universal. Over here, Southern Norway has a system whereby all MDs and all hospitals may access any patient medical record, - if (note!) the patient has been treated in southern Norway. If a patient has had an operation in Northern Norway, a health provider in Southern Norway will not learn about this, unless the patient mentions it. And the same goes the other way around, - south vs. north. To my surprise this system has remained for the last 10 years, without health authorities doing anything about it.

On December 4 I was going to have a hernia operation in Bergen, - on the southwest coast of Norway. The hospital has a section specializing in hernia repair with 3 surgeons performing only this kind of operation. They have extensive experience with laparoscopy (lap), and as I met my surgeon on the morning of the operation, she told me that the lap method was their standard procedure, unless the patients' condition dictated otherwise. I then told her that I had been operated for intestinal loop (blockage) back in 1970 in Bodø (Northern Norway), and she was surprised. She had not read anything about that in my medical record, and I showed her the remaining sutures. That made her change her mind regarding her planned way of repairing my hernia just minutes before the operation as the 1970 operation had actually accessed both the stomach lining and cut a muscle. So she decided to make an open repair."

What do you think about the need for access to the full patient record? If AI is seen as the solution how can we expect AI to guide clinical decision making if the data on the patient are at best incomplete. 

We have a long way to go...and we need to get there soon.

Johns Hopkins Part 3: Getting the Electronic Health Record (EHR) Right

Today I received a call from Stephanie L. Reel, Vice Provost for Information Technology and Chief Information Officer, The Johns Hopkins University. We discussed the importance of having an EHR system that worked for health care providers and patients. I suggested that she talk to some end users to see what actually works and does not work.

My experiences demonstrated how the EHR system can become a burden for all levels of health care providers and patients. This becomes exacerbated when the productivity of health care providers is measured and calibrated by the inputs and metrics that are captured as part of the EHR. It seems that with all the numbers that are crunched the qualitative aspect of health care interactions are lost. Moreover, the value of the interpersonal dimension of care is diminished if not obliterated by just counting the procedures that are quantitative, i.e., easy to measure. As a result a health care provider ends up spending more time in front of a computer than in front of a patient. This is not what was intended.

All health care providers and patients want an EHR that works. Health care providers need to have an EHR system that helps them input, review, and correct patient information accurately and easily. Patients want information that is accurate so that the precious time with their health care provider is not spent making corrections.

In our case my husband has an excellent physician and I want to make sure that the tools that are at his disposal are useful tools and not impediments. I also want to make certain that during those visits that by their very nature are stressful, that time does not have to be wasted because the EHR failed to do what it was intended to— be a vital tool for patient safety by reducing the likelihood of medical errors.

Johns Hopkins Part 2: Is This Service Excellence?

The initial response to my email (see earlier post) was from a staff person who was supposed to respond to patient issues. I thanked her for her call and emphasized that it would be better if I received a call from a more senior person who could address my concerns with their EHR system and the ease of its use.

Later I received a call from Ms. Becky Zuccarelli, Director of Service Excellence, who informed me that because of HIPPA requirements that she would need a release before she could talk to me about the patient issue. I informed her that this was not a HIPPA issue as it was not about a specific patient but about their system. While she tried to do what she was trained to do, she was unable to understand the broader implications of the failure of their EHR system to either engage physicians or other health care providers or be responsive to the needs of patients. Ms. Zuccarelli's focus on service excellence missed concerns about system adequacy.

Part of the success of any new system is listening to feedback from users and fixing the problem. Handling a situation is not the answer. I emphasized that they need to fix their EHR system before they kill someone and the fatal mistake ends up being chalked up to medical error rather than avoidable system failure.

I am still hoping for a meaningful response and will keep you posted on what happens next.

Johns Hopkins Part 1: The Electronic Health Record (EHR) that Isn't

On Friday, September 16, 2011 I sent the email below to Dr. Edward Miller, Dean and CEO of Johns Hopkins Medicine. Let's see the response I get:

Just to share with you two exchanges I had with your staff which indicates a failure in the design and implementation of your EHR system.

1. When I brought my husband in for his regular visit, once again he noted that he did not take the medicines listed on the printout. The response was that it was too complicated to change what was there as it would take too much time and anyway his medicines were properly listed in the notes.

2. When I reviewed the letter for my husbands scheduled infusion his medicine was incorrectly listed as Rituzan. When I called to get it corrected I was told that it was a mistake in the coding but that he would get the correct medicine..and moreover it has been incorrectly listed in the system since March when he first started to get his infusions.

Having worked on many aspects of getting legislation passed with respect to EHRs I was surprised and disappointed by the responses I received. EHRs are for more than billing; they are essential for patient safety. If someone is brought into the ER do you think the staff in the ER have the time to read through the notes to know the medications that a patient has taken? The responses of your staff reflect the failure of your EHR system to meet the needs of the health care providers at the front line as well as those of the patient.

I hope that you are able to make your system work better before someone gets hurt. I look forward to hearing from you about how you intend to fix a system which is not working as it should.

Sincerely,

Jane L. Delgado, Ph.D., M.S.
President and CEO
National Alliance for Hispanic Health
1501 Sixteenth Street, NW, Washington, DC 20036-1401
(202) 797-4321 Executive Office | (202) 265-8027 FAX
jdelgado@hispanichealth.org | http://www.hispanichealth.org