Cancer survivor creates revolutionary cancer care database
HealthTree offices located in Thanksgiving Point
In 2009 Jenny Ahlstrom, her husband and six children moved to Mexico with a vision of helping Mexican entrepreneurs create technology companies by connecting venture capitalists with start-up companies.
The Ahlstroms sold their home in Utah and started the adventure in Mexico. Jenny’s health began to deteriorate and when on vacation in Yellowstone, she was forced to visit a doctor in Montana. After a PET-CT scan, doctors found that her pelvis and spine were full of holes. “We think you have cancer and you’d better get checked,” the hospital reported. Her diagnosis came back as myeloma, a somewhat rare blood cancer.
After a visit to the Huntsman Cancer Institute in Utah, “I had a personal need to know what to do next,” Ahlstrom said. “I was driven to find out all I could about the disease, its treatment, and my chances for survival. I realized the internet was the way to connect with individuals who had also been diagnosed with myeloma.” Jenny and her husband, who had extensive experience in starting companies, decided if they were to win this battle they needed information from patients, caregivers, doctors and researchers.
Jenny commented, “The medical community is not aligned for cures. The patient is not the customer.” She also found that 80% of cancer patients are treated in community centers while 20% are treated at academic centers. “We need to practice precision medicine,” she continued, “We need to aggregate all data and make it available, but because of regulations this information cannot be shared. We need to know how one patient responded to a particular treatment and how other patients respond differently.”
Her efforts combined into a support group called “Myelomacrowd.” Its popularity expanded as she gave lectures, conducted podcasts, and had outreach opportunities all across the country.
Jenny’s hypothesis was to compile myeloma patient data across the entire spectrum of information including tumor genetics, life style, demographic, geographic, genomic testing, etc. All stakeholders need to be involved and this is impossible according to Jenny. “We want patients in control of their own data. There are several questions that patients should be prepared to ask caregivers. “What are my treatment options? What are the preferred suggestions? What are expert preferred suggestions? Are there clinical trials being offered and where can I find out more about them?”
Regarding her own treatment, Ahlstrom said, “In trying to discover all the information I could, I found the search emotionally satisfying. Cancer patients feel like they have lost their free agency. I became empowered by the quest to find a better way to share information.”
With input from many sources, researchers, doctors, patients, etc. the Ahlstroms created a website called “HealthTree” that houses aggregated data and creates a silo for each cancer patient containing all the information from all stakeholders, including attending physicians, current condition, fitness data, myeloma genetics, lab values and the EHR (electronic health records.) This is available for anyone who creates their own portal. The project manager is from MD Anderson Cancer Hospital in Houston, Texas.
“This can be expanded to all types of cancer,” says Jenny. This information can be tracked longitudinally and the outcomes can be evaluated. Patients also become part of the treatment plan, but most importantly the patient owns the data.”
When Ahlstrom’s data and website were shown to a doctor at MD Anderson, his eyes lit up. “This saves so much time,” he said.
Jenny added, “Through our research we learned that patients live years longer if they are treated by a myeloma specialist, but fewer than 80% of patients are seen by a myeloma expert.”
The HealthTree platform will help myeloma patients understand more about myeloma and relevant treatment options while helping researchers understand more about myeloma.
“My driving motivation,” says Jenny, “is that of a mother who wants to see her children grow up. Our family goal has been to buy me enough time to do this and we are encouraged at the very real prospect of finding a cure.”
The effort has been funded by donations from various myeloma groups and grants from pharmaceutical companies. Ahlstrom will speak in a nation-wide lecture tour over the next few months, including many major cities across the country. Visit www.HealthTree.org to find where and when lectures will be held.
Jenny has been in remission for seven years. HealthTree’s offices are located in Thanksgiving Point.