In an ongoing series, I have been touching on multiple issues involved in cardiac patients and the data derived from their implantable defibrillators and pacemakers, which is heretofore unavailable directly to them. I have not fully discussed the viewpoint of device companies for a few reasons. I wanted to explore the multiple aspects of the problem and give the patient’s view first. It is a complex issue that needs technical, regulatory, and workflow considerations addressed, but can easily be accomplished with participation of all the parties. It is my belief that the companies realize the importance to patients and the ethical obligation involved. Here are some reasons I believe companies will get involved in this effort.
- 1. It’s the right thing to do. Cardiac rhythm device companies all have benefits to their patients in their mission statements. I would not hesitate to say that people working in these companies care about patients. Sure they are profit-motivated but they make products to improve health. Sometimes it takes a critical mass of customer demand to facilitate service change. This has been occurring (albeit slower than what some would like) with connectivity of remote patient monitoring with EHRs. I believe that creation of the patient portal is the same kind of issue. I have no doubt that there is fundamental agreement among the companies that it is the right thing to do. The devil is in the details and process.
- 2. Patients are customers too. One might ask “Who is the customer of a cardiac rhythm device company?” Is it the prescribing or implanting physician? Is it the hospital with which the purchasing contract might be made? Or is it the patient in whom the device is implanted? I submit that it is all of the above. Once the patient receives the device, there is likely a lifelong relationship with that company. It is surprising how many patients do not even know the name of the company of the implanted device. They receive an ID card with that information at the time of implant, but many do not keep it and fewer people look at it. Having a patient portal may serve to solidify that customer relationship. Health insurance companies are the preeminent providers of patient portals now, and they recognize the customer relationship value of them.
- 3. It is helping the provider. By giving patients access to basic data from their devices, companies are both providing an educational tool to the patient which helps in patient management by engaging the patient. It increases understanding between the physician/provider and the patient. It can streamline the workflow of having the provider give the patient data in the form of a printout.
- 4. It decreases work for the company field representative. Sometimes a patient is in an operating room and the implantable defibrillator needs to be deactivated, or a device needs to be interrogated in the emergency room to see what the settings are, or what the status of the device’s battery is. Having the patient portal information tell the provider what company’s device it is, what the basic settings are, and when the device was last interrogated is a significant improvement from a workflow standpoint compared to calling a company rep (done in most instances) to come and interrogate the device. This data will also expedite troubleshooting by the healthcare provider.
It is necessary to look at the issue of direct access of patient cardiac rhythm device data from all the important angles. Certainly the companies themselves need to part of the solution, and should not be looked at as the only ones responsible for the problem. It is an issue which has evolved. Physicians have not as a group been adequate patient advocates until recently. Social media has facilitated patients’ voices being heard. Most patients do not realize the benefits of having their data. Hopefully initiatives in progress will address the problem in the fullest way, satisfying to all the stakeholders involved. Stay tuned.