Site Editors
Shaji K. Kumar, MD
Prashant Kapoor, MD, FACP
Shaji K. Kumar, MD
Prashant Kapoor, MD, FACP
Posted: Wednesday, April 6, 2022
Patient-driven data capture tools such as the HealthTree Cure Hub may alleviate common research hurdles for investigators performing research in multiple myeloma, according to findings presented in JCO Clinical Cancer Informatics. Using these portals may accelerate multiple myeloma research, develop new hypotheses, and improve survival outcomes among patients, concluded Michael A. Thompson, MD, PhD, of the Aurora Cancer Care, Milwaukee, and colleagues. At the time of publication, the hub employed 126 myeloma coaches mentoring 744 patients.
“Individuals affected by this devastating disease can aid in accelerating research and find help independent of their living conditions, location, and socioeconomic status,” the authors said. “All they need is Internet access and a computer, tablet, or cell phone.”
In 2018, HealthTree Cure Hub, a patient-driven data portal for those with multiple myeloma, was developed by the HealthTree Foundation, a nonprofit advocacy group for patients with multiple myeloma. The portal aimed to overcome four hurdles in multiple myeloma research: small numbers of patient accrual to clinical trials and research studies, shallow and isolated data sets, high costs of disease research, and a lack of long-term follow-up patient data.
As of June 2021, the HealthTree Cure Hub had enrolled 9,225 patients with multiple myeloma. In the hub, patients were encouraged to digitally sign medical record consent, allowing a HealthTree medical consultant to transfer significant patient information such as the patient’s diagnosis, health and fitness parameters, treatment history, genetic results, and health and family histories. From these data, there have been 14 studies on multiple myeloma facilitated by HealthTree CureHub, which have resulted in 10 scientific publications.
HealthTree Cure Hub allowed researchers to investigate questions not normally funded by the industry or the federal government, including the optimal induction therapy for standard- and high-risk patients, possible late treatment options for the subset of patients with t(4;14) multiple myeloma, and the impact of COVID-19 on patients. The portal promoted beneficial patient programs such as myeloma coaches, community forums, and weekly e-mails.
Disclosure: For a full disclosure of the study authors, visit ascopubs.org.
JCO Clinical Cancer Informatics
