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Navigating Rare Diseases: New Platform Aims to Connect Patients with Rare Diseases to Hospitals

May 19, 2014 | CurityMD is striving to inform patients with rare diseases about the specialists, treatment options, clinical trials, and hospitals around the country that can best meet their needs. The CurityMD platform lets patients search by condition and drill down by geographic location, ranked hospitals, and centers with ongoing clinical trials.  
The idea, co-founder Rajiv Mahale said, was born at Wharton Business School at the University of Pennsylvania about two years ago. Mahale and two other co-founders launched the idea at the DreamIt Health venture program in Philadelphia last summer, and released an improved algorithm in December. The company lists 10 employees, and works out of Venturef0rth start up space in Philadelphia. 
Clinical Informatics News editor Allison Proffitt spoke with Mahale to discuss CurityMD’s newly-announced pilot program with the Penn Medicine and where he hopes to take the platform. 
Clinical Informatics News: How did you and your Wharton classmates come up with the idea for CurityMD? 
Mahale: Basically, the genesis of the company was we had a lot of frustration with being able to find a specialist, specifically for a loved one with a complex or rare condition. If you need a primary care visit, there are a lot of applications that can help you find a doctor for an appointment immediately. However, when you have a serious medical condition, it’s difficult to find information to draw you to the right specialist. 
The referral process today is more of an ad-hoc process where a lot of physicians rely on past relationships. Patients are left a bit powerless to go online and really find the doctors or the people or the centers that have seen their particular case. That’s represented really, especially heavily in the rare. People with rare conditions will bounce around seeing 5 or 10 specialists over the course of 2 to 7 years or longer.
Last month, CurityMD announced an agreement with Penn Medicine’s Abramson Cancer Center to allow patients with multiple myeloma, mesothelioma and amyloidosis to connect directly with the Abramson Cancer Center through an online appointment scheduling tool within CurityMD. How does this work? 
This is definitely our beta site and we have a lot more to do, but if you go and search on multiple myeloma, for example, or amyloidosis or mesothelioma and you click on Penn’s specific name, you’ll see a follow-up page that has a lot more information on that particular hospital. You can see some of the experts at the facility, you can see the actual PubMed articles and click through to them, and you can actually click and see the abstracts for the clinical trials there. 
In the future, we hope to use our natural language processing techniques to not only just show you who the experts are, the trials and fill in information like specialty and pictures and all of that, but we also want to show things like what interventions, what drugs, what different procedures [a hospital is] most familiar with. 
We can start that process by using some of the technology that we have, but also partnering with hospital systems to make it better. We’ve had [hospital] systems that are really excited about our site being a place where they can showcase data. A lot of systems say they have great data on their particular outcomes for a certain particular population, because they’ve invested years or decades, really, developing these procedures. 
For example, at Penn, for mesothelioma, they do a lot of lung-sparing or photodynamic therapies for the mesothelioma patients, which can substantially improve quality of life, have some great outcomes. But to discover that, you might have to read a lot of abstracts and interpret the scientific charts. And so we’ve tried to make that easier.
In terms of the clinical trials, how are you going to facilitate the enrollment process for the patients? 
Our first step is just to show people what facilities are doing what. And the next step would be to help try to correct information [much of which is collected from hospital websites, PubMed and], because some of it’s stale and some of isn’t the most updated. So when we partner with the hospital system, we tell them this is what we pulled and then we also allow them to look at it and try to correct or update things that might be a little bit stale. And then the next step for us is to also take that information and perhaps make it in a language that patients can understand a little bit better and maybe even make a way for patients to comment on the trials to help other patients kind of gain more comfort or understand what they’re getting involved in. 
But in the future we’d love to, for each trial, with eligibility requirements, allow patients to click on them, input some information so that we can see whether they’re eligible and maybe inform them of trials that they might be eligible for in the future, when that comes back.
I hear a lot of stakeholders in this. Where do your allegiances lie?  
I think patients come first and foremost; we want to be unbiased. So there would be no changing [a hospital’s rank] in our system based on hospitals’ preferences or anything like that. Our primary goal is to help patients just find and understand the landscape of different facilities that know about their condition, that have seen patients like them. And next step is to understand exactly what differentiates those facilities. 
All of the hospitals treat the condition in a different way and certain hospitals are ranked for different patients, and it’s [a task of helping patients] understand who has the expertise. The next step is evolving and determining which expertise is right for [a patient] based on the quality of life [he] wants to live, based on [her] risk tolerance, based on what [he] wants to achieve and helping to understand that balance, which is where we want to be. 
We want to use data to level the playing field, and also help those hospitals that might not have a brand name as Cleveland Clinic or some of these larger clinics, but still have really differentiated expertise and have spent years cultivating it. We want to help them to educate patients about what they’re doing and to basically attract the right patients to their innovative research to help progress the science and advance care in those areas. So that’s kind of how we view the world.
But first and foremost, unbiased data-driven information for patients. We don’t want to deviate from that at all, because once you do that, your information is useless and you’re no better than the information that’s currently out there, or better than an Adworks campaign that can just dominate the first page of Google. 
Right now CurityMD includes information for patients with about 6,800 rare diseases—those affecting fewer than 200,000 Americans as designated by the NIH. Why these diseases?  
Our system is structured so we can really run any type of condition or procedure through our system. Where we think that our information is more valuable are in those conditions where there is really niche expertise, or it’s tough to find that information. A lot of content online or physician-finding websites focus on the specialty level, so by focusing on the condition level, a condition like diabetes would—it’s too common to kind of leverage through our system. But where we’re really good is finding those experts and those facilities for where clinical trials, publications and some of our other claims information can really highlight those experts.
In the future we’d love to expand to more common conditions, but we really want to focus where the pain point is deepest. These patients, as I mentioned, have spent years trying to find experts and oftentimes see multiple specialists that lead to kind of ineffective care. So if we can help with that population, we feel like there’s a good chance that maybe this is a service that can be helpful to the broader patient populations.
The Penn Medicine pilot is your first announced hospital partnership. What’s next on your roadmap? 
We’re working to create [hospital profile pages] for all of our hospitals. For our partner hospital systems, we have the appointment scheduling, but for those that we aren’t partnering with, we’re going to add phone numbers and things like that, so [patients] can at least connect to the facilities. 
We are also looking to improve our algorithms. The doctor list we show today is a truncated list, and if we want to add kind of the specialty information, sorted by the most relevant physicians for those hospitals and add more content, build their content, we’re scraping a lot of information from resources online, including hospital websites, to give patients more information and adding that for all hospitals. So if you can envision the Penn example as like one data point, if we could do that for all of the hospitals in our system, that’s where we’re going and driving to. 
The first step is identifying who the experts are and giving patients and other doctors good information about them, but down the road we’d also like to tackle things like apps you can build off of [this information], whether it be Telehealth, providing second opinions to patients, or building other ways to help other physicians use the system to connect with experts for complex cases. 
What have you been most surprised by as you’ve built the system? 
We’re really trying to build a platform that first and foremost helps patients. In talking with even doctors though, I’ve been surprised that even expert doctors need experts. So there’s a lot of doctors that even though they’re specialists, highly specialized in certain cancers, they still refer to other systems to get second opinions when it comes to conditions they might not know about. 
It is important that patients do their homework. A lot of times patients, specifically in rare conditions know a lot about their particular condition and sometimes it can be a difficult decision to venture out from their local physician. But the care can really make a difference if they have something niche to get them to the right place. And it can really help kind of push innovation as more and more patients go to these centers of excellence or for places where doctors have seen multiple versions of their condition, you can really develop innovative treatments and I think that that’s something important that we want to communicate to the patient populations out there.


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