The clinician voice: How PGHD tells the full story

I have written the life stories of over 3000 people.

While I served as a diagnostician or psychotherapist for over 3000 individuals, I also viewed myself as their biographer. With the people I worked with, we would aim to reconstruct an often fractured narrative in a more humane light during the initial assessment and then write the next chapter towards a happier ending through treatment.  

Throughout my career, I have worked with individuals as young as five and as old as 95 in both institutional and community settings. Some of the most powerful experiences were with people who had never told their story before and those who were telling their story for the last time months before they passed on.

However, most of the people I served could only tell me so much directly, as they were preoccupied living with severe physical, mental, and cognitive conditions, sometimes accompanied by substance use as well as socioeconomic barriers. As I only worked with high-risk individuals, it meant that previous treatments failed, and if I couldn’t find the root cause and act upon it, I could fail them too.

It would have been impossible to deliver the care they deserved if I were responsible for treating all of these conditions myself. Fortunately, as a result of the growing awareness that symptoms are not individual threads but an interwoven tapestry, there has been a rise in integrated care teams. These teams, comprised of physical and mental health providers working together to treat individuals, can provide regular phone check-ins as well as clinical visits and advanced procedures performed right in the home setting. House calls, in particular, can greatly improve access to healthcare for people who have limited means to travel to a clinical office – and offer deeper insight into the social determinants which impact their health.  

The integrated community-based model improves our ability to hear more of the individual’s story, as we can gain a greater understanding of a person’s everyday life outside the traditional clinical setting, which had previously been excluded from our purview. However, our capacity to hear their story remains confined to the limited time we spend interacting during the appointment or phone check-in. Although broader in scope, the integrated community-based model by itself still does not sufficiently capture the story of the people we serve as we have little to no insight into what is actually happening regarding their health during daily life.

This lack of insight is concerning. In the transition to value-based models, clinicians are increasingly held accountable for the holistic outcomes of the people they serve instead of just treating symptoms through providing high quality care during the encounter. As it is estimated that 80-90% of the factors contributing to health outcomes exist independently of conventional medical care, how can we truly be responsible for these outcomes if we only have the tools to realize such a small fraction of the contributing factors?

Without more information about a person’s life outside of the clinical setting, providers are unable to collect and act upon the right data to succeed. If we knew that the person was faring well at home, we could avoid unnecessary routine encounters, thus saving cost and time. This is especially important in value-based models where the expense of care is being increasingly shifted from the payer to the provider. Greater insight, of course, would allow for more targeted outreach, triage, and preventive treatments; for example, avoiding unnecessary routine encounters with those who don’t need them could free slots in the schedule for high-risk individuals who need to be seen before they experience an adverse event.

The majority of the people I served struggled with managing both physical and mental conditions. Many were both non-adherent and disengaged with their treatment regimens, or even if they were engaged, their various biopsychosocial impediments prevented them from being adherent. Consequently, they would frequently avoid seeing their medical providers and neglect to take their medications or track their chronic conditions on their home health devices – if they even had one at all.

As a result, countless times I was present for a psychotherapy session, only to have to engage in crisis response due to their near-fatally uncontrolled hypertension or diabetes instead.  As these physical health conditions often exacerbate mental health symptoms, I was glad to be present to support them during this emergency. Yet, this crisis might have been averted if their physical health providers had foreknowledge of any underlying trends which impacted health in the home setting.

There was another occurrence which plagued me throughout my career that could be solved by having greater insight outside of the traditional clinical context. Adults with dementia and certain other cognitive differences can be quite limited in their ability to express their stories verbally. As a result, if an elderly person experiences a fall or some other health crisis, there is often great confusion about the precipitating factors. The same goes for young children.

But, it doesn’t have to be like this.

People have long relied on home health devices, but due to great advancements in digital health technology, they or their caretakers can have their readings automatically sent in near-real time to their clinical providers. If integrated into the clinical workflow, providers can record and analyze these data and then intervene in the moment before an emergency occurs, rather than waiting for the next scheduled encounter or the person to make a costly visit to the ER.

These patient-generated health data (PGHD) both greatly amplify the individual’s voice to tell the full story and enhance our ability to hear it and act on it. In gaining an expanded awareness of the individual’s lifestyles, behaviors, and happenings at home, we aim not to overpathologize them, but to reach a 360-degree view of how we can promote healthier outcomes and overall well-being. In my perspective, remote monitoring could help individuals feel less alone or vulnerable in their home setting and in daily life, as they would have a regular, direct line to their clinical providers in sharing data, especially if they have devices which allow for continuous passive monitoring of their health.

PGHD can transform a patient, one who passively waits on their clinical provider for support, into a client, one who is actively engaged and communicating with their providers through sharing data. PGHD thus helps us more effectively identify root causes and implement targeted interventions, especially for events that occur when we’re not with them.

As I never was afforded the opportunity to work in a remote monitoring program which provided me with data about my clients’ lives outside the traditional clinical setting, the 3000 life stories I wrote with my clients were incomplete.

Today, PGHD can help complete those stories, and clinicians in remote monitoring programs will write the next chapter for delivering the highest quality of healthcare.