Recommendations for Sharing CIED Data with Patients

About

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Clinicians, patients, and the healthcare industry are key stakeholders in the management and sharing of cardiovascular implantable electronic device (CIED) data. Our prior research with patient stakeholders has shown that patients have interest in some data over others, however, the reasons why these data are important to patients (such as how it relates to their specific cardiac condition) were not uncovered in depth. For example, a patient with primary prevention implantable cardioverter defibrillator (ICD) may have much different interest and concerns than a patient with a secondary prevention ICD. Further, interpretation of CIED data depends on multiple factors, including (and not limited to) the type of device, the patients’ health condition(s), medications, health history, and treatment plans established through shared decision making. The reports of data from the device include multiple pages of data that require specialized training to be able to interpret. We have learned that patients would like to have simple displays of data that can provide useful, personally relevant information. Thus, it is important to integrate patient and clinician perspectives of what information (and data elements) are clinically relevant and meaningful in order to create a shared understanding and ultimately meet patients’ needs.

While there are multiple and diverse factors that influence the use of CIED data in clinical decision making, this study focused on identifying clinical care gaps, or clinical issues where CIED data are not utilized most effectively in the care and treatment of patients with CIEDs, potentially hindering the ability to achieve the optimal treatment plan or goals. Specifically, this research project aimed to elicit key clinical care gaps that can be addressed through utilizing and sharing CIED data with patients, as well as recommendations to help patients and prepare them to understand their CIED data and facilitate communication with clinicians.

Methods

From February 2022 to May of 2023, our team completed two phases of interviews with clinicians, including physicians, advanced practice providers, and nurses who specialize in the care of patients with CIEDs. For the first phase, we conducted 14 interviews to identify clinical care gaps related to care for patients with CIEDs. For the second phase, we conducted 28 interviews to uncover recommendations for sharing data with patients across three different clinical scenarios. Each scenario involved a different type of device, namely implantable loop recorders (ILRs), pacemakers (PMs), and implantable cardioverter defibrillators (ICDs).

Results

For each scenario, clinicians described specific data points and types of information that would be helpful for patients to receive from their remote monitoring reports on in-person device checks. Clinicians expressed that the main Ebenefit of patients’ access to data from their device involved engaging patients in their care, such as helping them prepare for visits or reach out to their provider for prompt follow-up if needed. However, clinicians expressed concerns related to patient misunderstanding or misinterpretation of the data. As such, care must be taken with sharing the data, such as providing interpretation of raw data and assuring patients that concerns from the report are not life-threatening.

Conclusions

The findings from this study can facilitate meaningful communication about CIED data between patients and their cardiology care team. As patients have increased access to their electronic health record information, it is important to support communication about the data rather than simply providing a lengthy report of raw data elements that only a trained professional can understand.

Partners

  • Parkview Mirro Center for Research and Innovation
  • Parkview Physicians Group - Cardiology
  • Parkview Arrythmia Diagnostic Center

Funding

  • Medtronic: PLC ERP-2021-12718

Publications and presentations

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