Understanding long Covid will take the lived experiences of long haulers

I went from training for the Big Sur 21-miler to barely being able to climb a flight of stairs in just six months. The cause? Covid-19 or, more specifically, long Covid.

As a researcher, I want to know how this happened and, more importantly, how to fix it. I’m not alone. The “fix it” question is on the minds of as many as 23 million Americans and 100 million people worldwide who have experienced long Covid, which has emerged as a new chronic illness.

In August 2021, two members of my household tested positive for Covid. Being fully vaccinated, I didn’t test myself but, between the exposure and developing a number of Covid symptoms, saw the writing on the wall.

The symptoms appeared in a complex pattern: coughing; severe pain in my face, neck, and shoulder; unrefreshing sleep; and relentless tinnitus that persisted in spite of different treatments. Long after my family members had recovered, my problems persisted. My clinical care team wasn’t convinced by my hypothesis that I was experiencing long Covid symptoms. I went through months of trial and error with multiple courses of medications to treat my symptoms. Steroids gave me temporary relief, but symptoms often returned quickly, and more aggressively. The physical and mental exhaustion took a huge toll.

Five months later, a second go-round with Covid — this one confirmed by testing — reset that course. My facial pain evolved from severe to debilitating to unbearable. It also led me to a new ear, nose, and throat specialist who listened to my story and did a thorough examination, unlike my first ENT, who was more convinced by his past, pre-Covid experience than the evidence in front of him that connected these two infections with the onset and exacerbation of my symptoms.

I was diagnosed with dual infections in my sinuses — aspergillus fumigatus, a fungal infection, and staphylococcus, a bacterial infection — which surprised even my care providers because I was a young, fully vaccinated adult with a solid health profile. As I write this, researchers are still trying to grasp the relationship between Covid-19 and opportunistic infections like aspergillus.

Understanding Covid-19 and long Covid requires the kind of gold-standard research that has been fielded for other conditions, like HIV and Guillain-Barré syndrome. But it will also take the lived experiences that people with it have accumulated, along with so-called real-world evidence. Only with this combination can the scientific and public health communities arrive at real answers that finally bring the support and long-term care needed by people with this perplexing condition.

That starts with listening to those living with long Covid. Fortunately, it is easier than ever for individuals to be part of the research process and to help drive it.

As an avid smartwatch user, I took that empowerment to heart and, throughout the progression of my illness, have monitored health data like my stress level, my Garmin smartwatch’s “Body Battery” metric, readings from my pulse oximeter, and other measures. I was actually able to pinpoint when I became symptomatic from Covid-19 for the second time. It was marked by an unusually high heart rate, an all-time high stress level, and a Body Battery level that bottomed out over the course of several days. And since my journey with long Covid began, I’ve found patterns predicting symptom exacerbations. I generally know when I’m going to have a good day or a bad day in terms of fatigue and pain levels by how well my body battery recharged overnight.

I’m not alone in this regard. Julia Moore Vogel, a researcher with Scripps Research who has reported having different post-Covid symptoms than me, described in a video that she relies on smartwatch data to inform her understanding of her condition.

With the widespread use of wearables, people today wield more power to collect and share their experiences. This can empower clinicians and researchers by making it possible for them to observe and learn the realities of conditions like long Covid and build treatment plans informed by the real-world lived experiences of their research participants and patients — even when applicable gold-standard and peer-reviewed research have yet to meet the situational need.

Clinical researchers must move beyond the antiquated and rigid processes in place that impede the incorporation of real-world data into research, and instead invite input and data from the people the research community aims to serve. To arrive at timely, effective care for Covid long haulers, researchers and providers need to put these methods to work quickly for a rapid response that creates a solid foundation for care pathways.

These methods have been incorporated in some trials already underway, such as the Covid-19 DETECT Study and the NIH’s RECOVER study, and other work that might be able to predict Covid onset and recovery patterns using a bring-your-own-device approach to building patient-reported-outcomes-based studies. Across the research enterprise, however, the use of patient-supplied real-world data falls short of its potential to advance understanding and innovation among both life sciences companies and providers.

Real-world data is not a sure thing for finding treatments for long Covid, but it can certainly act as a compass so researchers and clinicians know where to look.

Within my own work supporting decentralized clinical research, I’ve been fortunate to see various examples of studies powered by real-world data. Researchers are examining the relationship between long Covid recovery and location to see the impact of the weather, pollen, pollution, or even social drivers of health on recovery. They are using wearables to develop digital biomarkers that understand, predict, and point to interventions for post-Covid syndrome flare-ups. They are even measuring caregiver intensity among those caring for people with long Covid, as they face significant levels of uncertainty and challenges with care navigation. And my personal favorite: Researchers are scouring the Reddit community r/longcovidhaulers to understand firsthand how people are managing the uncertainty of this condition.

Even when Covid-19 is no longer a public health emergency of international concern, the world will be facing a long haul with it. How life science leaders approach this challenge will write a new playbook for how they advance disease research and care innovation. One of the chapters must be about including patients and their everyday realities through their collecting and sharing real-world data from smartphones and wearables.

Zeenia Framroze is vice president of strategy and operations at Sharecare, where she leads the strategy for decentralized clinical research with Smart Omix.