"What wasn’t expected, however, was the speed to data—this was a total game changer. Being able to go from knowing only basic demographics about a patient, to having their full history in minutes completely transformed the way we could provide care at The EDS Clinic. This allowed us to go from needing days to prepare for upcoming visits, to being able to see patients who booked last minute appointments."
Q: Tell me a bit about The EDS Clinic: What is it, and what inspired you to embark on this journey?
A: The EDS Clinic is a virtual clinic that provides evaluations for diagnosis and treatment for those dealing with Ehlers Danlos Syndrome (EDS), and other complex conditions. EDS is a condition that is still not very well understood today, so we’re on a mission to provide a place where those dealing with EDS across the country can go to for care and be seen.
My inspiration for the EDS Clinic came from my Dad, an allergist, who told me that he was worried about what would happen to his patients if he ever retired. At the time I had never heard of EDS. I naively thought he just saw regular allergy patients. After learning more about his practice, I began to realize that they had much more than just allergies. They were dealing with really complex medical conditions, especially after COVID. I saw firsthand that there were so many people out there who needed help. They needed a clinician who could really understand the complexities of their conditions.
Q: That’s pretty incredible. How did you start seeing patients, and what was the process of onboarding them like?
A: The clinic began seeing patients in 2024. Most of those patients had complex medical histories, and they often were traveling all over the place to get care. So when they onboarded, it often took a long time to track down their entire medical history, so we would have the right context going into our first appointment with them. Most of these patients came in with only a small subset of their medical history, such as a recent lab, or they had some suspicion that they had EDS based on a previous conversation with a doctor, so it was hard to get the full picture without going all over the place to stitch info together, and even then, we were left with an incomplete view. Originally, we tried leveraging some health information exchanges (HIEs) through the EHR we were using to help with this, but this proved to be not only very limiting in terms of overall coverage for our patients, but also too cumbersome to navigate through their portals. The records in the EHR portal required way too many clicks to find what our clinicians needed.
Q: That sounds painful for sure. I’m assuming this is where Metriport came into play?
A: Yes, after this initial launch and less-than-ideal solutions for getting our patients’ histories, it was clear to us that we needed something that could offer us great coverage for our complex patients. It also needed to be something that was intuitive enough to navigate without any engineering work to sort through the data. When I first was learned about Metriport at a healthcare event, I was quickly sold on the fact that we could use their PDF medical record summaries to get the complete picture we needed for our patients. Their summaries had great coverage across the board for our population. What was really nice was the fact we could get started with Metriport’s dashboard, since our engineering resources were limited at the time. The tool made it super fast and straightforward to pull the patient records. All their records would populate in one place within minutes compared to the days it took in our EHR.
Q: That’s awesome, were there any surprises when you started using Metriport?
A: So when we first started using Metriport, the features such as the medical record summaries and the 90%+ coverage were what I had expected. That’s what had sold us on the tool in the first place. They delivered on their promise. What wasn’t expected, however, was the speed to data—this was a total game changer. Being able to go from knowing only basic demographics about a patient, to having their full history in minutes completely transformed the way we could provide care at The EDS Clinic. This allowed us to go from needing days to prepare for upcoming visits, to being able to see patients who booked last minute appointments. No matter how little time we had, we could supplement their self-reported history with rich external data from Metriport all compiled into a single document... For us this meant fewer spots went unfilled, and our clinician team no longer needed to go into appointments blind.
Q: Well that’s great to hear. What specifically are you using data from Metriport for?
A: So, part of our unique value at The EDS Clinic is that we believe our patients. So the data from Metriport isn’t to verify if our patients are telling the truth, but more to add context to their full history that they otherwise might not remember. Even healthy people forget to mention encounters from a while back, and for complex patients, it’s very difficult to remember every historical encounter, let alone every encounter in the last few months. We use data from Metriport to get a more complete picture. We can often find important data points that our patients don’t have on hand. This goes beyond just general things such as “vitamin D levels are low” — Metriport tells us their specific lab values, which is helpful for treating our patients effectively, as well as being able to see specifically what previous providers wrote in their reports.
Q: That’s interesting. What was your experience like working with the Metriport team throughout this process?
A: Dima and the team are super quick. They got us set up in days, taking care of our application and everything we needed to get approved by Carequality and their other network partners to exchange data across all major healthcare systems in the US. Because we didn’t have an engineering team starting out, Metriport was very accommodating by offering their dashboard as opposed to just their API to get started with. I think one of the biggest value propositions of Metriport so far has been the fact that we can always reach out to the team if anything has come up, and they respond right away. Whether this is for a scenario where we don’t get a response for a patient we were expecting data for, or for a feature request, the team has always responded and acted on our feedback in real-time. Once, I requested an integration just hoping that some day, maybe it would be possible, but they completed it within the week. This has really strengthened our relationship with Metriport making them a full-service solution, rather than just a standalone tool.
Q: Is there anything else we should know about The EDS Clinic and your mission? What’s in store for you next?
A: Right now the standard of care for EDS patients across the country is neglect, because few people are able to diagnose EDS properly. We’re on a mission to change this. Having a solution like Metriport gives us the information we need so we can incorporate the full scope of the medical history when assessing and treating our patients. Each of our patients is unique so it’s important that we have Metriport to enable a detailed evaluation of their history. Providing quality care to the EDS community is really important to us. We hope that one day, we can change the standard of care for the entire country so that every person with EDS can access medical care.
