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Rare Diseases: CurityMD, New Online Tool For Patients Searching For Medical Experts

June 4, 2014

CurityMD created by start-up SpeSo Health, is a new tool that uses data, statistics, and technology to connect patients with rare diseases to the appropriate information and care that is required. CurityMD is “an online platform that helps measure expertise in rare and complex conditions to help improve how patients and qualified specialists connect”. CurityMD is a search engine for rare diseases. With CurityMD, one can:

•   Find the most experienced care centers and experts, nearby or anywhere in the United States
•   Find important clinical trials, research, and new treatments
•   Find hospitals looking for patients with rare and complex conditions.

The Orphan Druganaut Blog is honored to have a chance to talk to CurityMD co-founders, Jonathan McEuen, PhD, and Rajiv Mahale.

Please provide a brief history how your start-up SpeSo Health came to be formed.

The co-founders met during our first year in the Healthcare Management MBA Program at Wharton.  We came from different backgrounds – science and medicine, finance and investing, consulting and healthcare regulation – but we all shared a common interest in making healthcare data more useful for patients.  All of us have had family members or close friends that have experienced an important health event, and our experiences frustrated us when it came to the inefficiencies of referrals and the convoluted process of finding and connecting with the right experts for our issues.  When we realized that these pain points were common to not only us but patients around the world, we set out to take what we had learned as patients and advocates and use technology to automate the process and make it available to all. We launched a very basic site and got positive feedback from patients and advocacy groups in mid-2013.  Our idea was a finalist in the Wharton Business Plan Competition and we were selected into a healthcare incubator called Dreamit Health which really helped to launch our company.

What is the mission of SpeSo Health? What is the mission of CurityMD ?

Our mission is to empower patients and doctors with actionable medical information.  We are starting by focusing on the 25 million patients with rare and complex condition in the U.S., who face some of the deepest pain points and inefficiencies in accessing the right care.  The average patient with a rare disease can see between 5-10 specialists and 2-7 years before finding the right expertise for their condition.  We’d like to use our data to identify leading experts in rare disease and connect patients and their primary care doctors to them more efficiently.

“Data mining” is a buzz term used in the healthcare industry, what exactly is data mining in relation to CurityMD ?

Data mining is about transforming large amounts of information that is technologically complex, hard to understand and challenging to manipulate into simple and actionable insights.  Many patients today start their journey as untrained data miners reading about their condition online, canvasing peer-reviewed literature, reviewing clinical trials results, and speaking to doctors and patients to make the best medical decisions possible. CurityMD’s data mining automates and systematizes this process, making it easier and more interpretable for anyone.  To put it simply – patients already have a lot on their plates, and reading through thousands of technically-complex articles and reports shouldn’t be another barrier for them;  our data mining software does the heavy lifting for them, unlocking the power of that data without requiring that every patient get a PhD in statistics or epidemiology.

How did your company become involved with rare diseases ?

All of the co-founders have faced the frustration of finding information on the physicians and interventions that could help them or their loved ones face challenging medical conditions. Getting to the right care can substantially improve a patient’s quality of life, and this can be especially true in rare and complex conditions.  There are over 6,000 rare condition and many of these patient populations are underfunded and underserved.  We wanted to create a resource that would help across all rare conditions, because even though each condition is unique, they  often present a few universal challenges, which we try to address.

How did the collaboration of SpeSo Health and Penn Medicine’s Abramson Cancer Center to develop CurityMD come about ?

Penn Medicine and the Abramson Cancer Center have been great supporters of the Dreamit Health Program.  Through the program we were able to find the doctors and business leader champions that saw the potential of our service and helped us shape our product.  The Abramson Cancer Center has deep and diverse expertise in a variety of rare and complex cancers making them an idea candidate to test pilot our services.

In April of this year, you announced a Pilot Program for CurityMD. Please provide some information about the Pilot Program: length of the Pilot Program, what diseases/rare diseases are involved, what is the next roll-out scheduled for & what diseases/rare diseases are involved ?

The pilot—which is free for patients and nationwide in scope—will allow patients with multiple myeloma, mesothelioma and amyloidosis to connect directly with the Abramson Cancer Center through an easy-to-use online appointment scheduling tool. Over the next several months CurityMD will be adding additional information on physicians including specialty, contact details, and deeper understanding of the exact treatment and interventions used. In the future, the pilot could extend to providing physician question and answer and online second opinions for certain conditions. CurityMD has also incorporated open data sets released by CMS and various states which we look forward to incorporating in the future.

What has the feedback and reaction been from recent users of CurityMD ?

Each day our site sees thousands of visitors organically and we are growing at a rapid rate. Patient feedback has been very positive particularly for conditions where there is very limited information online. There has also been strong international appetite for connecting with leading experts in the U.S. Users have asked for more detailed physician information, contact details, and additional details on the publications and trials by specialist – all features that are rolling out shortly. We have also received positive feedback from patient advocacy groups who we seek to collaborate with.

Is CurityMD free ? If so, will it continue to be free ?

CurityMD is free for patients and we will never charge patients to access the data on our site.  Currently, we fund the business by charging hospitals a fee to engage access solutions on our website such as appointment scheduling and online second opinions but these partnerships never to influence our rankings.

What resources are curated to provide the online information to users of CurityMD ?

CurityMD collects millions of pieces of information to give users a clear sense of where influential clinical research is taking place, for thousands of rare diseases. Our information includes peer-reviewed literature, clinical trials, grants, claims data, among others.  We leverage a variety of algorithms to also assess the influence of an expert by understanding their citation and co-author relationships in addition to attributes such as the size, phase, and results of the clinical trial.  While we capture information from international sources our focus is on the United States currently although we will eventually expand abroad.

What are your next steps for the roll out of CurityMD?

We continue to incorporate new datasets relating to physicians, hospitals, and medical expertise and believe that there is a big opportunity to use our technology to help make healthcare more transparent for patients.  In addition to our data-driven approach, we’d also like to partner with patients and have launched the ability for our users to nominate doctors to include in our system.  Rare patients and care givers have spent tremendous efforts in researching and finding experts and we’d like to make that effort valuable for more patients.  By combining our data driven approach with patient and physician suggestions across all rare conditions we are confident that we can build a resource that helps millions of patients find the right care for their needs.  In addition to the new features described above we will be announcing three new hospital partnership in 10 rare conditions and several collaborations with advocacy groups.

What do you see for the future of CurityMD ? For the future of curation or data mining of rare disease information ?

Healthcare information is increasingly becoming digitized.  The challenge is how to make that information valuable to patients and doctors.  While initially we are using this information to better map out the landscape of doctors, hospitals, and treatments once we understand this well there are a lot of applications that can be built off of this framework.  In the future we see the ability for patients and their primary care doctors to quickly connect to the right experts for their condition online despite geographic boundaries.  Patients and their doctors will more easily be able to understand their treatment options in an evidence and data-driven way to make better healthcare decisions.  We also see increased collaboration between disparate patient and physician communities. By mapping out expertise and insights across all rare conditions we can leverage resources and research findings for the benefit of many patients across several different conditions.

Jonathan McEuen, PhD (Co-founder): Jonathan is an entrepreneur and a scientist who launched his first company (Saoirse Laboratories) when he was 19 year-old at MIT. He built the scientific foundation for Saoirse, established core scientific data and helped grow the company. After leaving the company and a stint at the NIH, he was funded throughout his PhD in neuroscience at UPenn where he focused on informatics and systems-level questions related to genetics, stress and neuroendocrine signaling. He spent just enough time in academia to send him launching back to the nexus of science and business, as a management consultant at the Frankel Group. He is also a graduate of the Healthcare Management MBA program at Wharton (2013).

Rajiv Mahale (Co-founder): Raj has over 9-years of healthcare investing experience and has executed over $2B in M&A and recapitalization transactions.  Prior work experience includes Healthcare Investment Banking at Merrill Lynch, Healthcare Private Equity at Altaris Capital, and Healthcare facilities and providers research analyst with Deutsche Bank. Raj is also an active volunteer and patient advocate.  As the leader of a 15-person volunteer corps at New York’s Special Medicare Rights Center, he transformed project and team dynamics doubling the program’s reach.  In 2009, Raj created a charity website called a website designed to facilitate giving in New York. While at Wharton, Raj also co-founded and is the first ever recipient of the Wharton Venture Award Winner for two separate ventures.

Please Note: “CurityMD Logo” Courtesy of CurityMD.

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