A big data partnership holds big potential for blood cancer patients

On the surface, the task of data gathering and analysis may not spark excitement.

But when it comes with the possibility of helping people suffering from rare and difficult to treat blood cancers, a routine task becomes life-changing.

And when it perfectly aligns with the strengths of a group like AbbVie’s health economics and outcomes research (HEOR) team, it’s even better.

The HEOR team is deep into data research as part of the company’s commitment to HARMONY Alliance, a European-based public-private partnership formed in early 2017 with the goal of improving treatments for people with blood cancer. The alliance, funded through the Innovative Medicines Initiative (IMI), has attracted about 90 total members and associated partners, from pharmaceutical companies, academics and clinicians to patient advocacy groups, payers and regulatory agencies, all pursuing the same mission for patients.

In late 2019 the alliance hit a key milestone of identifying data records for over 45,000 patients across Europe with blood cancer, hosted on a data platform that’s one of the largest of its kind in the world.

Never before have all these records been available in one place, opening new possibilities for research that could ultimately improve care for people with blood cancer. And with key players like payers, patient advocacy groups and regulatory agencies at the table from the very beginning, it presents an opportunity to closely collaborate and bring treatments to patients faster, says Thomas Marshall, director, HEOR, AbbVie.

“This ambitious alliance is the new frontier of data collection in Europe,” Marshall says. “We came in and said, ‘we not only want to participate, we want to help drive certain areas of research.’”

Alliance partners, including AbbVie, identify and prioritize research questions to better understand seven priority hematological malignancies like chronic lymphocytic leukemia (CLL) and multiple myeloma (MM).

For example, for the past two years AbbVie has been driving a research collaboration in multiple myeloma within the HARMONY Alliance. The next phase of the research project will lead to the contribution of data for over 10,000 patients with multiple myeloma managed in the real-world setting. The purpose is to better understand how, in the real world, disease and treatment progresses for these patients, says Sudeep Karve, director, HEOR, AbbVie.

“Within AbbVie, the HEOR team is uniquely positioned to help because we’re the ones who can speak the data language plus the clinical language,” Karve says.

The opportunity to combine so many forms of data from different sources, everything from clinical trial data from pharmaceutical companies to real-world evidence to personal experiences from patients, is what makes the alliance so unique, says Paolo Ghia, M.D., professor at the Università Vita-Salute San Raffaele and president of the European Research Initiative on CLL (ERIC).

“We’re posing important questions that are impossible to solve or answer at the single institution level,” Ghia says. “The ability to participate in such a wide network is really the reason why this is so exciting.”

As the largest European-based organization that supports practicing hematologists like Ghia, the European Hematology Association (EHA) helps facilitate in-person meetings for the HARMONY community and is also a critical voice in ensuring the interest of the public partners on a secure data platform, says EHA Executive Director Carin Smand.

Many hematologists are eager alliance participants, specifically interested in unique data on conditions like chronic lymphocytic leukemia (CLL), Smand says, a slow-progressing cancer without a one-size-fits-all treatment.

“These physicians see the increasing amount of data on the platform, which is important because it allows them to better understand certain patient characteristics,” she says. “We talk about the value of the volume of patient data (available through HARMONY) but there is just as much value in the uniqueness of the data.”

Patients have become increasingly savvy in health care decision-making and closely follow research in their disease areas, with the health care industry focused on how to best improve patient outcomes and enhance quality of life, says Kavita Sail, director, HEOR, AbbVie.

“As a company that’s focused on patient-centric research, this is where we can be key partners in the HARMONY initiative and actually lead data generation supporting clinical drug development,” she says. “We can champion this research.”