Utah woman Jennifer Ahlstrom building cancer-fighting network
Jul 31, 2018 01:17PM ● Published by Josh Wood
Jennifer Ahlstrom leading a HealthTree meeting. (Photo courtesy Jennifer Ahlstrom).
By Joshua Wood | firstname.lastname@example.org
Jennifer Ahlstrom is one of five people on her street in Cottonwood Heights diagnosed with a relatively rare form of cancer. Once she finished her treatments, she decided to get proactive by learning all she could about her disease and by finding ways to help other people fighting it. The result has been an ambitious crowdsourcing platform with the potential to fight other diseases as well.
Ahlstrom was diagnosed with multiple myeloma in 2009, not long after she and her family had moved from Cottonwood Heights to Mexico to work on projects they had started there. She felt like something was wrong while on vacation at Yellowstone National Park and consulted a doctor in Montana. A week later, the physician called to tell her the news.
“For me to get that disease at 43 years old was such a huge shock,” Ahlstrom said. “We didn’t know what to do. Do you move back to Utah or go back to Mexico? We had six kids, sold our house, and made commitments to the project in Mexico.”
Ahlstrom decided to move back to Utah and lived with her sister in Cottonwood Heights. She completed treatment and did maintenance therapy at MD Anderson Cancer Center in Houston. Once she was done with treatments, she wanted to do something. She learned as much as she could about multiple myeloma and found that existing therapies could extend life but not cure a person with the disease.
“Most of the time, people relapse,” Ahlstrom said. “We have to plan for relapse. You never know when it will come. Blood cancer is naturally metastatic because your blood is everywhere.”
Ahlstrom wanted to get people together, to connect people with similar conditions so they could pool together case histories and help physicians learn more about the disease more quickly. One aspect of Ahlstrom’s work was to encourage people to join clinical trials to help speed the development of cancer-fighting drugs.
“Today’s drugs are yesterday’s clinical trials,” Ahlstrom said. “We asked ourselves, what kind of contribution can we make?”
Ahlstrom started a website, www.myelomacrowd.org, aimed at improving patient outcomes and accelerating finding a cure. Through the CrowdCare Foundation, Ahlstrom and her associates have arranged patient meetings, worked with scientific advisory boards and raised funds. The organization raised $500,000 for high-risk myeloma.
The foundation’s crowdsourcing extended beyond raising funds to collecting data. “If we apply data solutions, we could come to conclusions more quickly,” Ahlstrom said.
That is where HealthTree comes in. Patients enter their data, which they own, and merge it into a network along with other myeloma patients. They enter things like the therapy they received, outcomes, side effects and lab results. As they enter their data, they get education covering relevant treatment options and clinical trials that might apply to them. Armed with more information, patients can have more context for collaboration with their physicians. And that information can lead to advancements in clinical trials and an accelerated path to a cure.
Multiple myeloma is a complex disease. The five people in Ahlstrom’s neighborhood in Cottonwood Heights had five different kinds of myeloma. Ahlstrom hopes her work will help specialists understand the disease better.
“Data projects have to be disease-specific,” Ahlstrom said. “There are many things specific to myeloma patients. Once we get it right in one disease, we can move it to other diseases.”
Ahlstrom has spent the summer traveling to communities on a 50-city tour of the US helping people use the system, to learn about their stories and see how the system works for them. She hopes to have over 1,000 people signed up for HealthTree by the end of the summer. Her overall target is to get over 10,000.
“We want patients to know that we are in the same boat,” Ahlstrom said. “I have detectable myeloma numbers. I have to make key decisions soon. Every decision affects other decisions.”
With greater understanding of the disease, those decisions can be more informed. “It needs to be a collaboration,” Ahlstrom said. “What can patients do to help find a cure?”
By pooling together each patient’s story, each person’s experience, they can work collectively to find a cure for the disease they share. Ahlstrom hopes her focus on multiple myeloma will eventually help people suffering from other conditions.
“If we do this properly, I think it will work for any disease.”