Patient access to data is another challenge — and opportunity. Patients have access to more of their data than ever before. From wearables and consumer products like home blood pressure cuffs to patient portals, patients can view lab tests, imaging results, and physiological parameters often before their own doctors. While patients feel empowered by this access, the healthcare community finds itself playing catch-up. How much information is helpful, and when does it become harmful to patients? How do healthcare providers manage patients’ expectations for “all access?”
Again the evolution of data from cardiac implantable devices can be informative. Patients with pacemakers and implantable defibrillators have become more proactive about requesting the data generated by their device. While remote monitoring often eliminates the burden of traveling to their physician’s office and waiting to be seen, it also eliminates the immediate feedback of being told that everything is working properly. Instead, remote device data is often sent automatically without the patient’s knowledge, and clinician workflows have not always evolved to deliver prompt feedback to the patients at home. While some are satisfied to be told that “no news is good news,” patients increasingly want more details. At the same time, while some physicians are comfortable with cardiac device data being available on a patient portal, the complexity of the reports and the lack of overall clinical context may generate anxiety, a deluge of phone calls, or both. As more data are available from a broader spectrum of devices addressing a wider area of medical problems, these concerns and conflicts will increase exponentially.
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Finally, interoperability of information systems is required in order for data to be truly useful to both physicians and patients. While Electronic Health Records (EHRs) can provide a single repository of information to enable timely access by health care providers and to empower patients, these benefits have largely not materialized. Data are frequently siloed within separate systems that don’t talk to each other. Cardiac device clinic nurses must access three to four different manufacturer web portals to evaluate remote monitoring data, and it is often difficult to get the information into the EHR. Any dramatic expansion of consumer wearables into the clinical arena must be accompanied by a solution that allows both clinicians and patients to view all data in one place.