There is a groundswell of discussion concerning patients demanding to have direct access to data derived from their implantable defibrillators and pacemakers. I have discussed in other articles why patients deserve their data and the benefits derived thereof. There are no substantive arguments against this practice, and I always thought, throughout my 12 years of remotely monitoring patients with these devices, that they not only were entitled to the information, but that it would make them better patients for having it. However, I have heard arguments over the years by physicians why this was not a good idea at best and detrimental at worst. I will offer some of them and counter why I disagree.
1. Patients don’t know what they are looking at. While this might be correct on face value for many patients, offering a patient portal or PHR with a clear, short explanation of a set of values is easily accomplished and worthwhile education. This will not only describe the data set, but offer up references as to the clinical significance of the category of data.
2. Patients don’t want to know their data. Most patients are ignorant of the fact that they do not have the right to the data (via the HITECH Act) and that they might benefit from knowing some basic data (see https://davidleescher.com/2012/01/26/five-reasons-why-patients-with-implantable-defibrillators-deserve-their-data/). The traffic in social media generated from patients, patient advocates, and providers in response to efforts made by me and others has disproved this.
3. Patients will have data before physicians, generating anxiety and a deluge of queries. There are currently plans for an initiative which will result in patient portals for patients with cardiac rhythm devices. The process will include expert physicians and representatives from industry and patients. I agree that the data should be reviewed by physicians and providers prior to a patient seeing the results. This is necessary because this data, even with a summary provided by the PHR, requires input with an explanation from the provider. There will be a mechanism whereby the physician reviews the data and conveys the results (in person or digitally with adequate explanation) prior to releasing it to the PHR.
4. Patients aren’t technologically savvy enough to obtain the data. While this might be true in some cases, caregivers and family members will certainly be on the right side of the digital divide. The information can be designated to be routed to a caregiver. I foresee the data being available both via the Internet and via mobile app.
5. It will require extra work. This argument was first offered with reference to remote patient monitoring itself. In reality, it creates level of efficiency not present before. A digitally reviewed report which is automatically pushed to a PHR qualifies for an efficient modality of information transmission in my book.
I look forward to this initiative and more so to patients becoming educated about both their heart disease and implanted cardiac device, and engaged in their health care. Stay tuned.