[{"innerBlocks":[],"name":"core\/freeform","postId":1496,"blockType":{"name":"core\/freeform","keywords":[],"attributes":{"content":{"type":"string","source":"raw"},"lock":{"type":"object"}},"providesContext":[],"usesContext":[],"selectors":[],"supports":{"className":false,"customClassName":false,"reusable":false},"styles":[],"variations":[],"apiVersion":3,"title":"Classic","description":"Use the classic WordPress editor.","category":"text"},"originalContent":"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.

Also See<\/b>: Pulmonary fibrosis pulmonary organization creates registry for research<\/a>

Jenny Ahlstrom, with six kids in 2010 at age 43 contracted Multiple Myeloma. Today, she\u2019s still fighting cancer and is founder of The Myeloma Crowd, a not-for-profit organization for patients.

Five years prior to her diagnosis, Ahlstrom\u2019s 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. \u201cThat\u2019s when I learned of the power of data,\u201d 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\u2019s husband is a venture capitalist and entrepreneur who has seen both sides of the use of technology in healthcare and other industries. \u201cHe sat down with the IBM Watson team and they gave us Watson if we supplied the data.\u201d

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\u2019t want patients leaving their practices to go to Ohio State.\u201d

The next step was an offer made to buy Microsoft\u2019s HealthVault technology, but the company would not sell even though it was no longer using HealthVault.

\u201cWe thought someone was complying data and could help, but no one was doing it,\u201d Ahlstrom recalls. \u201cIndividual facilities have their own data but can\u2019t share because of HIPAA limitations. And technology companies don\u2019t have relationships with patient communities, they only think about what they want.\u201d

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. \u201cIf patients contribute data we can bring value,\u201d contends Ahlstrom. \u201cBut oncologists kept saying \u201cno, we know how to treat.\u201d

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.
","saveContent":"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.

Also See<\/b>: Pulmonary fibrosis pulmonary organization creates registry for research<\/a>

Jenny Ahlstrom, with six kids in 2010 at age 43 contracted Multiple Myeloma. Today, she\u2019s still fighting cancer and is founder of The Myeloma Crowd, a not-for-profit organization for patients.

Five years prior to her diagnosis, Ahlstrom\u2019s 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. \u201cThat\u2019s when I learned of the power of data,\u201d 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\u2019s husband is a venture capitalist and entrepreneur who has seen both sides of the use of technology in healthcare and other industries. \u201cHe sat down with the IBM Watson team and they gave us Watson if we supplied the data.\u201d

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\u2019t want patients leaving their practices to go to Ohio State.\u201d

The next step was an offer made to buy Microsoft\u2019s HealthVault technology, but the company would not sell even though it was no longer using HealthVault.

\u201cWe thought someone was complying data and could help, but no one was doing it,\u201d Ahlstrom recalls. \u201cIndividual facilities have their own data but can\u2019t share because of HIPAA limitations. And technology companies don\u2019t have relationships with patient communities, they only think about what they want.\u201d

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. \u201cIf patients contribute data we can bring value,\u201d contends Ahlstrom. \u201cBut oncologists kept saying \u201cno, we know how to treat.\u201d

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.
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Patient-led portal aggregates crowdsourced data to accelerate cancer cure

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