Blood cancer patients share their treatment data for research

Ahlstrom says doctors don’t have good data because researchers don’t have good data either.

“It’s messy, it’s missing, it’s incomplete, it’s not representative of the whole patient experience,”  Ahlstrom said. 

Take her experience, she first received treatment at a cancer center in Texas when the family still lived in Mexico, and later transferred to a provider in Utah when the family moved back there. Each medical center only had partial information, only the patient has access to all of the medical records, all of the pieces to the puzzle.

Ahlstrom asked herself, what if patients uploaded their own data to her website, allowing it to be accessed by researchers, to speed along progress and discovery?

She successfully completed stem cell transplant treatment, her cancer went into remission, and she became the CEO of the HealthTree Foundation, putting a lot of her time and effort into building out the site. 

She took her idea on tour, she visited 50 cities, and spoke to over 800 blood cancer patients. And she asked them: Would you share your data? Everybody she asked said they would gladly share their information.

HealthTree now offers all kinds of information to blood cancer patients. It helps them look for clinical trials, treatment protocols, or brand-new treatments. Patients can also use a tool called “the twin machine,” something Ahlstrom wished she had when she was first diagnosed. 

“I had a specific genetic feature and I was a younger patient. I wanted to see a list of all the patients that looked like me.” The twin machine matches patients with others who have similar features. “You can’t see who they are, but you can see their past therapies, how long they remain in remission. You can see their genetic features.” People can also reach out to each other and ask to connect. “Because you might have a question like, ‘Why did you decide to do this over this?’” 

The site is also moving the needle for researchers. Patients upload their data, which is anonymized – but it offers a complete picture, it includes all of the medical records from different treatment centers. Everything is organized into a single patient profile and the data is made available to researchers and treatment providers.

Ahlstrom says HealthTree recently conducted a patient survey for a myeloma investigator. 

“We had 1,500 patients respond within four weeks, which is unheard of for clinical trial recruitment timeframes. And then we gave him the data for free,” Ahlstrom said.

The researcher told her that it would have taken him a lot of time and money to do the same work. “He said, ‘well, I wouldn’t have had 1,500 patients at my own center. So, I would have had to sign a data sharing agreement with somebody else. Then I would have had to hire a research coordinator, who would administer all the surveys, aggregate the data, and then do the analytics.’”  

Ahlstrom said the researcher estimated that this would have cost $150,000 and taken a year and a half. “I mean, no wonder we’re not getting cured faster. To me, it’s just unbelievable that it would take this long to get through research,” she said.

Ahlstrom says working on this site has been really meaningful for her. 

“It makes me want to cry all the time. I love doing it. I love supporting patients.” 

One user recently told Ahlstrom the site saved his life. He said he found a new treatment option that his doctor was unaware of, they used it and it worked for him. 

Ahlstrom’s goals remain the same:  support patients, support treatment providers, support researchers. “We just want faster cures. That’s it.”