Heretofore this series has focused on issues specific to patients with implantable cardiac rhythm devices who deserve to access their device’s own data directly via patient portals or PHRs. What I would like to suggest is that if this PHR becomes a reality soon, that it will lead to widespread adoption of patient portals in general. Remote monitoring of implantable cardiac rhythm devices was the first widespread use of remote patient monitoring. It was adopted slowly for many reasons. However, early demonstration of its merits (increasing provider efficiency, cost reduction for providers. patients, and caregivers), as well as other studies showing clinical benefits and improved post-market surveillance of devices and leads resulted in mass acceptance.
Publicity about these portals bringing vital information which will improve healthcare of cardiac device patients will foster awareness of patient portals in general. Cardiology is a high-profile section of medicine because of the prevalence of heart disease (number one killer of men and women in the USA), the economic resources it utilizes (estimated 40% of Medicare dollars), and an area of significant health care technology development.
Social media discussions abound now about patients demanding direct access to data provided by their implantable cardiac devices. These portals will therefore be meeting a ready-made need, and will therefore, I believe, be adopted fairly rapidly.
Technological considerations in developing these portals can be applied to other patient monitoring technologies (perhaps incorporated?). This might be analogous to offshoot technologies developed during the quest to land men on the moon (see https://davidleescher.com/2011/12/19/will-mhealth-be-the-next-flight-to-the-moon/).
The importance of the creation of these specific portals is that it has been driven by patient demand as well as regulatory mandate. PHR adoption has been slow because of lack of technology in many EHRs, lack of patient demand in general (likely due to lack of education about their rights to EHRs), and a possible medical cultural conflict of interest where providers are not prepared to deal with the reaction of patients who receive their EHR (time-consuming follow-up questions, explanations, challenging factual correctness, etc). The relatively small size of the cardiac electrophysiology community of providers and patients lends itself to being a showcase of navigating through the education and adoption process of all stakeholders, and provides a fertile ground for solutions to technical challenges involved as well. Stay tuned.