Why patients with implantable defibrillators deserve their data

The Health Information Technology for Economic and Clinical Health (HITECH) Act, enacted as part of the American Recovery and Reinvestment Act of 2009, was signed into law on February 17, 2009.

The objective of Measure 12/15 of Meaningful Use regulations of the HITECH act which refer to electronic health records, states that eligible professionals “provide patients with an electronic copy of their health information (including diagnostic test results, problem lists, medication lists, medication allergies) upon request.”  A patient’s implantable defibrillator consists of a diagnostic test of the patient’s rhythm as well as of the implanted device itself. I do not see a distinction between data derived from these devices and other diagnostic tests.

I will describe why, in addition to conforming to the above regulatory requirement, the furnishing of this data will benefit patients.  Some patients will want to receive the entirety of the data, though they might not understand it all.  However, most would do well with limited pertinent information which would serve them and their caregivers well.  In either case, both population groups deserve it.

1. It will increase patient engagement.  If patients receive their device’s data they will feel more a part of their healthcare.  Many patients are apprehensive about receiving an ICD in the first place.  It is generally an outpatient or 23-hour stay procedure. The amount of information and the situation itself is overwhelming. Good patient education and support by the physician and staff is essential in medicine in general and with ICD patients especially. The first thing I did when I started my practice in 1991 was start an ICD support group for this very purpose. It was the most important thing I ever did for my patients and I organized and presented information as well as facilitated discussion at every quarterly meeting for 20 years. Patient knowledge is a very important patient engagement tool.  Patients who know in layman’s terms how their device is programmed, how their device functions and how it interacts with their heart function are better patients.

2. It will increase understanding about the device.  The high rate cutoffs, pacing rates, episodes of atrial and ventricular arrhythmias all may work to increase awareness of how the ICD functions in the specific patient.  Changes made to the settings should be accompanied by an explanation by the provider to educate the patient with regards to why they were made.  I found this to be extremely valuable. It is the dialogue itself which demystifies the numbers and technical descriptions which patients hear in the office, often causing them anxiety.

3. It will increase the understanding of medication use.  Many patients do not understand the profound impact that medications have on cardiac function or on patient-device interactions.  Non-adherence to medications resulting in congestive heart failure, arrhythmias which might or might not result in ICD shocks, is not emphasized enough to patients. An increased understanding about the complex relationships between meds and devices will go a longer way than wagging an index finger to a patient after a shock following medication non-adherence.

4. It will increase understanding of heart disease.  Cardiac disease is not static.  It changes over time, more drastically in some than in others. This will necessitate change in medication type or dosages, and/or device settings.  An explanation of the indication for the device, the natural history of the disease (in general and specific to the patient), and why the device settings are set in a specific way complete a story for the patient which is digestible.

5. It provides a communication bridge to other providers.  Patients who have access to and know their data are sources of continuity of care to other providers.  Until all (or most) EHRs communicate with each other, a patient portal with basic ICD settings and explanations might be the best way for other providers to understand how a patient’s device functions and is set at.  Many primary care providers would like this information but have no access to it.  Initially snail mailed printouts to referring physicians. When hundreds and then thousands of patients were in my clinic, I found it impossible. An informed patient (or caregiver) can convey that information to other providers.

It is time to have cardiac electrophysiology enter the 21st century.  It is embarrassing that  IT resources available to providers utilize is light years behind the devices which furnish the data. It is embarrassing to leave our patients in the dark, by design or technological necessity, as to how their devices are programmed or what their arrhythmia status is.  While the above focuses on implantable defibrillators, it by no means is meant to exclude patients with pacemakers or other implantable monitoring devices.

David Lee Scher is a former cardiologist and a consultant at DLS Healthcare Consulting, LLC.  He blogs at his self-titled site, David Lee Scher, MD.

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