Patient Engagement: For Myeloma Patients, Two Organizations Provide Hope
By Adam Beards
For The Record
Vol. 32 No. 6 P. 26
Federal agencies continue to take steps to ensure patients have convenient, affordable access to their medical records, a development that bodes well for improving care and lowering costs. The effort is an especially welcome change for patients suffering from any number of complicated diseases where sequential visits to different specialists and treatment centers often leaves data in the hands of multiple practitioners and databases. As a result, the data can be difficult to access and make sense of.
The process of sorting through disjointed medical information is well known to Jennifer Ahlstrom, who in 2010 was diagnosed with multiple myeloma, a type of cancer that forms on plasma cells, reducing the body’s immune response and increasing infection risk.
Ahlstrom, a mother of six who was working as a systems analyst at IBM when she received her diagnosis, remembers well the resulting feelings of isolation and confusion. She says it was difficult to gather and interpret the complex medical information that was spread out between multiple locations.
“I wanted to get up to speed on myeloma and there was no place to do that. I had to search for scientific articles and try to understand them myself. Nothing was dumbed down for me or explained in a patient-friendly way,” Ahlstrom says.
A lack of community support made things even more difficult. “There were existing foundations in the myeloma space, but I didn’t feel like they addressed the needs I had as a patient,” Ahlstrom says.
To assist those who might be feeling similarly isolated and overwhelmed after receiving a diagnosis, Ahlstrom created the CrowdCare foundation in 2012. CrowdCare is a nonprofit organization that focuses on establishing a community of support and information for sufferers of rare diseases. Currently, there are two sub–organizations—MyelomaCrowd and ALSCrowd—housed under the CrowdCare umbrella; each of these caters to their respective demographic through an interactive online portal.
The “Crowd” websites offer disease-specific news and information to readers, who find community support and guidance from a network of specialized health care professionals as well as fellow diagnosed patients and survivors.
MyelomaCrowd, the first of the two “Crowd” subdomains to debut, features seven myeloma experts, who publish a newsletter, and a constantly updating feed of new articles and strategies that patients can use to improve their lives and disease outcomes. The website also sports links to relevant myeloma research projects, a system that connects patients to a trained myeloma coach, and a search feature to locate nearby myeloma specialists.
“We built a patient community first,” Ahlstrom says. “We looked at everything from a patient perspective.”
MyelomaCrowd now boasts 120,000 unique visitors per year in the United States and is seen by 700,000 worldwide. “We’ve grown 75% year over year since 2012,” Ahlstrom says. “There are 120,000 living myeloma patients in the US, so we aren’t just getting patients; we’re getting family members, caregivers, and medical professionals too.”
While CrowdCare has been successful in its mission to provide lifesaving information and community support to a suffering population, Ahlstrom has also created HealthTree, a parallel nonprofit organization that keeps track of patient health data.
Founded in 2018, HealthTree, a companion website to CrowdCare, focuses more on the technical aspects of patient health information such as data housing and analysis. It works as a longitudinal data registry, keeping track of patient information over a span of years. With more than 5,300 active users, HealthTree is currently the largest single database of multiple myeloma patients.
The website centralizes what was once decentralized health information. For many myeloma sufferers, it’s common to have health records scattered between various clinics and facilities. According to Ahlstrom, only 8% of a patient’s health information is actually stored on their EHR. The remaining data are distributed between various paper forms and digital databases trailing behind the patient’s medical travels.
After inputting information into HealthTree, health data become easily accessible and in one place, greatly facilitating an overall synthesis of information by patients and doctors alike. “The patient is the only person who can really bring [the data] together,” Ahlstrom says.
With HealthTree, myeloma patients can create a nameless profile and input metrics such as genetics, specific type of myeloma, stage of disease, treatments received, and health outcomes. All data are anonymous, but individuals must still opt out of HIPAA to be compliant with the regulations of data sharing. Once patients understand why HealthTree was created, they often have no problem sharing their health information with the nonprofit.
But in an age where a HIPAA violation can prove costly for health care organizations, some believe that patient health information should not be shared so freely. “We have been so conditioned as a country, because of HIPAA, to think our data are so valuable and need to be protected largely because of hospital fines,” Ahlstrom says. “We’re not trying to make a profit off the data; that’s why CrowdCare and HealthTree are nonprofits. What we’re asking is, ‘How do we find a faster cure?’”
By donating their information to the foundations, patients further the community understanding of their disease and can take solace in the fact that they are helping others on their treatment journey. “I wanted HealthTree when I was diagnosed,” Ahlstrom says. “I wanted to see patients who looked like me, what treatments they were receiving, and how those treatments worked. Before HealthTree, you’d be making these decisions in a complete vacuum.”
Further assisting HealthTree users with key health decisions are 75 myeloma experts who consult with patients. The experts are not financially compensated; instead, they are rewarded for their services by gaining access to the portal’s health data. “We don’t charge myeloma investigators to use the portal. We only ask that they contribute to the portal if they want to use it,” Ahlstrom says.
Ahlstrom recalls an instance where a myeloma researcher was looking for responses to his survey involving potential interactions between bone marrow transplants and flu vaccines. Using HealthTree, the researcher received 550 accurate and applicable survey responses in less than two months. “That survey would have taken him about two years and several hundred thousand dollars to run under normal circumstances,” Ahlstrom says. “Now, researchers can access that information for free.”
To further expedite myeloma research, Ahlstrom had HealthTree IRB approved by Western IRB. The agreement permits researchers to publish based on the listed information. “Our goal is not to lock down information—it’s to free up information so we can learn things faster,” Ahlstorm says.
A Tangible Tool
To assist the myeloma experts with their decision making, HealthTree has begun to utilize an artificial intelligence system called Auger, which analyzes a list of patient traits and genetic features and compares them with the progression of illness to present a set of treatment options. The treatments are ranked based on prior success rates for genetically similar individuals, so that myeloma patients who put forward their information today can help those who are diagnosed tomorrow. A myeloma expert and the patient review the options; both parties work together to reach the best outcome.
While Auger is not the sole entity making decisions regarding treatment, utilizing such algorithms can help practitioners and patients make more informed decisions in a shorter timeframe.
In addition to helping patients make educated decisions about their health care strategy, HealthTree has partnered with SparkCures, which helps connect myeloma patients to eligible clinical studies, thereby accelerating the attainment of life-saving results while saving money. “You see a list of studies you are personally qualified to join,” Ahlstrom says. “I don’t know of any other system that does that for any other disease right now.”
A Look Ahead
Ahlstrom anticipates the “Crowd” format being formatted into more diseases. “We can eventually partner with existing foundations,” she says. “We are building tools so that we can replicate this really quickly, both the patient community side and the HealthTree side.”
Ahlstrom believes it’s valuable for patients to play an active role in their recovery and to be a part of a community in their time of need. “That’s the power of having the community,” she says. “We’re using data to make decisions instead of just guessing.”
— Adam Beards is a freelance writer based in Bernville, Pennsylvania.