On November 17, I gave a keynote talk at DevDays – a conference for healthcare IT workers – on Long-COVID, and where I believe the healthcare IT community can help fill the gap.
- Information silos are unsustainable. Systemically under-captured data means we miss counting cases, dismiss symptoms we have no data on, and lack sufficient research data to characterize long-term consequences of this pandemic. More urgently, information silos are preventing non-recovered patients from getting timely and empathetic care for ongoing symptoms
- Patients know what COVID looks and feels like in our bodies. We have the experience and language to connect with other patients
- Let the patient community help. This is an urgent and innovative space where communities should be working with one another to build more effective and sustainable solutions
Watch the Video
Hi, my name is Hannah and I am a survivor of COVID-19. I'm currently on the only Patient-Led research team for COVID-19 that's investigating long term COVID symptoms and its effects on patients' quality of life. In our community, patients are suffering from months of non-recovery, relapses, and new symptoms after contracting COVID. They are left alone at home without resources and are unable to return to their previous lives. We call this phenomenon Long-Covid. Last week, Dr. Anthony Fauci stated that Long-Covid accounts for 25-35% of all COVID patients.
Extrapolated, that’s equal to 14M-19M people worldwide suffering from post-acute covid symptoms.
This is not a small number to overlook. Why did it take 9 months into the pandemic for public health to acknowledge that patients are struggling to recover? What does this say about the way we've been treating patient data around COVID?
While scientists grapple with a lack of complete data to do research and the healthcare system in many countries are struggling to keep up with the demands of covid, long-covid patients have known from the very beginning why our data has been unaccounted for.
Today I want to talk about the danger of information silos. Silos between patients, the medical community, and the technology that talk to both. To illustrate this, I want to take you on a personal journey of my experience struggling with COVID.
Before March 11th, I was a healthy 30 year old. I worked on product design with my fintech and cybersecurity clients. I had no pre-existing conditions and I was athletic.
5 days after a flight home in March to isolate, I felt sick. I remember my lungs hurting more and more every day, then I started coughing up blood. It was traumatising. So I called the COVID hotline, and the doctor I spoke to discouraged me from seeking care or testing. She believed I was too young and healthy and I had caught a bad flu. Another 5 nights later, I was drowning in my breathing, My heart rate went up to 120, and if I laid down, my blood oxygen plummeted. This was unlike any flu I've had. For the first time in my life, I feared for my life. I also feared that I would be turned away at the hospital. So I called telemedicine again.
This time, it took three hours on the line to talk to two nurses. Every time, I struggled through gasping to explain my symptoms from the very beginning when talking to yet another provider. Thankfully, they confirmed that I qualify for a PCR test based on my symptoms and travel history and recommended me to an emergency dept nearby. At 4 in the morning, I dragged myself to the hospital.
At the ER, I was triaged again, and this time, my doctor decided that I didn’t deserve a test, because I was still standing and breathing and test supplies were low. I was disappointed but understood, so I asked for a chest scan - At least tell me what's wrong with me! After the scan I was left to wait in a quarantined hallway for the doctor to deliver my results. The morning had passed, and by noon I was still waiting, trying not to faint from a lack of sleep and water, yet the doctor was nowhere to be seen and more patients were pouring in. It was clear that I was simply too low on the priority list, so I asked the nurses if they could provide results over the phone, but they said no, they don't do that. Finally, after 9 hours at the ER, I gave up and left empty handed. Weeks passed and there was no follow-up. It was as if I arrived with a bruise, not an infectious disease.
It left an impression on me. I felt dismissed, unseen. I stayed home, didn't try to seek care until a month later when I visited an urgent care clinic for ongoing chest pain. The empathetic doctor there was able to find my results from that night. In the ER doctor's notes, they had found the lower lobes of my lungs were in fact infected, consistent with COVID-19. The news came a month too late. When the doctor administered a PCR test that day, I had tested negative.
But testing negative doesn’t mean that the damage went away. For months, I suffered from unexplained symptoms of rashes, shortness of breath, headaches, and crushing fatigue. It wasn’t until mid-august that I stopped coughing daily.
That negative test result sealed my fate in getting further care. It barred me from the few post-covid clinics available to only patients with a positive result. I was disqualified from COVID studies that can potentially help understand covid beyond an acute disease. Doctors would not take my symptoms seriously, they’ve not seen long-covid cases in journals much less from non-hospitalized patients without a positive test result. It's a vicious cycle of neglect and dismissal.
My case is not unique. Thousands of patients like me have fallen through the cracks of healthcare.
When my Patient-led Research team conducted a survey back in April on 640 patients in our long-covid community, 48% were denied testing or did not have access to a test.
At the same time, we found that the prevalence of 60 symptoms were statically consistent across the board, regardless of test results. The major difference however was in timing of the tests. Those who tested positive were reported to have tested 6 days earlier on average, on day 10 of their infection. We are not counting all the cases. When testing is inaccessible and patients are ignored or discriminated while seeking care. The damage compounds down the road.
Often when Long-COVID patients call in to their physicians, we only have subjective accounts to go by. Some patients have been told that their symptoms were simply a result of anxiety. Patients were prescribed treatments like cognitive behavioural therapy - not helpful when you have ongoing multi-organ inflammation. When we are systemically dismissed, uncounted and not monitored, our care providers lack the data, research and best practices to help us even if they wanted to - because we end up not in the literature.
Information silos are unsustainable.
No one is as invested in solving this puzzle of long-COVID as the patients who are living through its consequences.
This is how the COVID-19 patient-led movement began. With frustrated patients pouring into support groups on social media. We found validation through similar unexplained symptoms, ongoing relapses, and we shared resources to cope. I shared a spreadsheet that originally helped me regurgitate my symptoms to medical personnel, it ended up helping another patient get triaged quickly when she was unable to form coherent sentences.
Others created exhaustive symptom lists, compiled Q&A from physicians at clinics they don’t have access to, and collectively disseminated research papers pointed to a potentially effective treatment.
Body Politic is one such community that formed around Long-Covid patients and has been growing on Slack since April. Today, our community has about 9k people. On facebook, there are long-covid communities over 100k people, and this is just the English speaking patients. Across the world, many more folks who are not recovering from COVID are joining support groups every day.
My patient-led research team organically came together in this community with our burning questions, large body patient data, research expertise to assemble it all together.
We published our first report on COVID recoveries in May. It sparked a big interest. This report, which you can access online on our website, became the first of many hurdles to get long-covid recognized in the medical community. In the summer months, we were cited in COVID guidelines for primary care physicians in the British Medical Journal, featured by the director of NIH. We appeared on panel with the WHO and consulted with other public health orgs. Today, we have over 20 researchers and advisors on our team, all long-covid patients.
Just last week, a new preprint from Mt. Sinai Hospital’s COVID clinic confirmed our findings in May around consistent symptoms across patients with positive and negative test results.
So what does this prove? Other than patients were right the whole time, and were not listened to?
It proves that we cannot effectively minimize the damage of this pandemic by working in information silos. Health professionals, scientists and technologists must believe in patients' experiences and invite them to the table when defining this disease, tracking its data, and co-designing its treatments and policies.
Patients are not merely subjects, but also a force of innovation. As much as long-covid is a confusing phenomenon, it’s also, in my opinion, an exciting space to move forward in making healthcare more equitable. People often forget that before we are known as long-covid patients, some of us are scientists, medical professionals, public policy specialists, technologists, designers, business owners, teachers, and leaders. We are well equipped to collaborate.
Let’s talk about how Health IT can collaborate.
Well, if you are building a system that collects data around covid patients, consult us patients, so that at the very least, you can make sure that you are collecting the kinds of data that don't leave patients stranded from care.
Let me give you an example. As patients, we find that many online questionnaires and covid diagnostics don't ask the right questions about symptoms. A system or app reporting data only around fever and shortness of breath may unintentionally dismiss a patient who may be experiencing blood clots, only visible in their lower body.
You probably didn't know the term "covid toes", but here's what that looks like. Because it’s such a multi-organ disease, patients can tell you exactly what that looks and feels like in our bodies and help communicate it in a way that other patients recognize to get care in a more timely, effective way.
On the other hand, people who are systemically dismissed might find themselves in the hospital weeks later with a seizure, kidney pain or cardiac arrest in the case of deteriorating blood clots. This is confusing and costly. These are stories we hear everyday among the community. We must do better for our patients and healthcare workers.
I want to end this talk with hope. Data oversight IS fixable if we break silos between the experts and the wisdom of collective patients.
Let the patients help.
I want you, the ones building these critical COVID apps, dashboards and healthcare infrastructure to reach out to our patient communities and connect with us. This is an innovative and urgent space where we should be asking each other hard questions and redefining what equitable access to healthcare looks like. I believe that together we can make data suck a little less, and help people with long-COVID, and perhaps other overlooked chronic illnesses, get the care that they need.