HealthTree.org, a new patient-led online portal, is aggregating crowdsourced data to accelerate a cure for Multiple Myeloma, a cancer with 30,000 new diagnoses annually that affects bone marrow.
The portal aggregates patient-contributed and de-identified data, helps patients find treatment options relevant to them in their specific stage of disease, and connects patients with clinical trials they are eligible to join.
In addition, the platform enables patients to track all of their myeloma lab values in one place, and allows patients to view collective reports that provide analysis of treatments based on their success.
Jenny Ahlstrom, with six kids in 2010 at age 43 contracted Multiple Myeloma. Today, she’s still fighting cancer and is founder of The Myeloma Crowd, a not-for-profit organization for patients.
Five years prior to her diagnosis, Ahlstrom’s brother-in-law got cancer and realized that data capture would be critical to his survival as doctors kept telling the family they needed to let him go. But he kept bringing more information to doctors and lived six months longer than the experts predicted. “That’s when I learned of the power of data,” Ahlstrom says.
Over time, members of the Myeloma Crowd have continued to collect data and build a community with live website meetings, but there were hurdles to actually using the data.
Ahlstrom’s husband is a venture capitalist and entrepreneur who has seen both sides of the use of technology in healthcare and other industries. “He sat down with the IBM Watson team and they gave us Watson if we supplied the data.”
Consequently, a researcher was hired to use the data to create a patient registry in Ohio that would be housed at Ohio State University and could be shared elsewhere. But no doctors would commit patients to the registry because they didn’t want patients leaving their practices to go to Ohio State.”
The next step was an offer made to buy Microsoft’s HealthVault technology, but the company would not sell even though it was no longer using HealthVault.
“We thought someone was complying data and could help, but no one was doing it,” Ahlstrom recalls. “Individual facilities have their own data but can’t share because of HIPAA limitations. And technology companies don’t have relationships with patient communities, they only think about what they want.”
So, it was back to trying to collect sufficient data to show specialists new treatment options, including how to show specialists to use pattern recognition to see changes in patient conditions. “If patients contribute data we can bring value,” contends Ahlstrom. “But oncologists kept saying “no, we know how to treat.”
Now, the Myeloma Crowd is going on its own with the launch of HealthTree.org and Ahlstrom recently completed a 50-city tour to promote the site.