As a data junkie, I am no stranger to numbers. My late father’s life story was comprised of 60 years fighting Type 1 diabetes.
He managed over 600 dialysis appointments in his last four years alone. His body received more than 70,000 insulin shots, two kidney transplants and two pancreas transplants. He tested his blood sugar five to seven times every day. He had to manage the disease 24 hours a day, like the 30 million others in the U.S. who suffer from diabetes.
I miss my dad, and I hate these numbers. They don’t tell the whole story of a humble man who never once asked, “Why me?” He took an active role in managing his care, much like so many other patients today who use sleep, heart rate monitoring, and fitness apps to track their conditions, regimen changes and how they feel when they do things differently. Numbers don’t show my dad’s amazing resilience amid hardship. They also don’t show the challenges he faced managing his chronic, complex disease—many of which stemmed from lack of data integration among his providers.
My dad often had to consult with new physicians about his symptoms and challenges. Each time he’d visit a provider, he would bring a paper book that he personally compiled and organized to show his clinical history, current medications and dosages, lab results, procedure details, and more. He shouldered the responsibility and the burden of integrating all his health data from various providers and his own daily glucose monitoring to get the best care. The healthcare technology ecosystem did not support his communication needs with physicians.
The healthcare industry is heading in the direction of giving the patient control over his or her health data. While doing so, we must remember that patients, especially those with chronic or complex conditions and comorbidities, should not shoulder the burden of poorly connected data solutions.
As technology experts, we should invest in innovative and interoperable platforms that are automated, integrated and enable a true care continuity. Fortunately, we are now part of a major shift that’s examining what would be possible if we tapped into data and technology to create a patient-centric environment.
Today, healthcare data comes from multiple sources, including providers, hospitals, laboratories and imaging centers. But data that’s relevant to a patient’s well-being extends beyond the clinical episode, from social determinants to biometric vitals management.
That’s where we’re seeing patient-generated health data (PGHD) come into play: an explosion of wearables and other devices that generate massive amounts of data that tells a deeper story of the patient condition. These are the heart rate and recovery, exercise, sleep, diet and more.
The PGHD can be integrated into the clinical record through native applications, and help providers identify what’s most relevant in developing the patient treatment plan. Enhanced data provides both clarity and insight for physicians, enabling better overall control of patient condition or wellness management.
In addition to patients securely sharing their information with providers, the communication can and should flow both ways. Patients have become more engaged in their own condition management and care, and we should explore new ways to reach them in a personalized manner.
Consider that 81 percent of Americans use a smart phone, and research shows that people can spend as much as four hours a day on them. Providers can send relevant health information—based on the PGHD coming in from patients—on ways to improve diet for a diabetic, exercise tips for someone with a cardiovascular condition, and sleep suggestions for a patient who’s not getting enough rest.
Patients can be getting customized medical “news feeds” in a timely manner to motivate a change in behavior, while text and email alerts can remind patients to test their blood sugar or take a medication. The content and data—securely residing in the cloud—would flow seamlessly anytime, anywhere, available when patients need them. I know my dad would have appreciated that.
Let us admit that adding more layers of data, insights and actions into the already complex provider workflows is only possible when a healthcare practice operates efficiently enough to be open to such enhancements.
With millions of healthcare data connections in any given community, secure and interoperable exchange of information remains the goal for all of us. This will be the moment when a patient like my dad won’t need to manually collect and carry around his own tome of medical records; and I believe all patient-centric technology vendors are working towards this vision.
However, we still grapple with technology inefficiencies within organizations. We’ve made a great deal of progress, but glaring—and easily fixable—gaps remain. Consider, for example, that while e-prescribing is now best practice, telemedicine functionality is often a separate platform, creating friction both on the clinical and billing sides.
Many practices encourage patient portal use for intake forms and scheduling purposes, but then send bill statements by mail, even to patients who prefer or would opt in to pay online. Some have disparate clinical, administrative and billing functions that require double data entry and don’t talk to each other. Others still need to transition to cloud-based systems and adopt workflow and mindset changes required by this shift. We all need to catch up with other industries on cybersecurity measures, such as multifactor user authentication.
As innovative technology and data alter patient and provider perception of health and healthcare services, we are shaping the future of medicine. I believe that collaboration among industry stakeholders to pursue interoperability, a stronger focus on the patient and provider needs and preferences, and adoption of best user interface and engagement practices from other industries will help us get there faster.
For so many of us in healthcare, our work is as much personal as it is business. As I think of my dad, who passed away from his illness in 2017, I am honored to be part of the community working to secure the ideal of patient-centric care provision based on technology that can reach everyone, bridge gaps, and alleviate stressors.
