Kathy Giusti founded the Multiple Myeloma Research Foundation (MMRF) and the Multiple Myeloma Research Consortium (MMRC) after she was diagnosed with multiple myeloma, a form of blood cancer, in 1998. Twenty years later, Kathy is in complete remission.
A former business executive, Kathy has become a leader in the field of precision medicine for drug development. She is the faculty co-chair of the HBS Kraft Precision Medicine Accelerator and sits on Verily’s Advisory Board in addition to advising Project Baseline.
Verily’s Scarlet Shore, Product Lead for Project Baseline, sat down with Kathy to learn more about her perspective on precision medicine, data sharing, and how to drive innovation in the field of clinical research and care.
Q. It’s been 20 years since you were diagnosed with multiple myeloma, yet at the time your doctors believed you only had three years to live. To what do you attribute this incredible accomplishment?
A. Hearing you have three years to live is daunting, and like many I was determined to fight it. Twenty years later in complete remission of multiple myeloma, I can point to two things that made a significant difference in my journey.
First, I was an educated patient who took an active role in my treatment. I was fortunate in that I could gather the necessary information to identify the right track to take. I was also knowledgeable enough to make sure that I got to the right doctors at the specialty centers and raised my hand to be part of the research process. I pursued genomic testing and discovered my subtype, and with the right doctor identified the treatment that would work best for my particular situation. Having an identical twin provided unique opportunities in both my treatment and role as a research participant.
Second, I owe my longevity in part to starting the Multiple Myeloma Research Foundation (MMRF). We were able to build and rally the myeloma community and create a foundation that was not just a funding entity, but a “doing” entity with a collaborative mindset. The MMRF brought together researchers, patients, and providers into a consortium and collectively built an end-to-end system in precision medicine – one that has significantly advanced the research and knowledge on this cancer.
Q. The MMRF has had a tremendous impact on patients as well as the field of research more broadly. What sets your model apart from other research organizations?
A. My background is in business, so it was natural for me to lean into certain business principles when crafting the MMRF’s strategy and operations. I saw dispersed researchers, providers and patients facing a challenge we all want to solve. By prioritizing the challenges and aligning the incentives, we could all win. For example, when I was first diagnosed, it was clear my tissue was in high demand from researchers, and I asked myself why it was so hard for researchers to get. The business solution became a centralized, collaborative tissue bank spearheaded by the MMRF.
We are also intensely disciplined on writing strategic and operating plans that model our work three years out. We place a high priority on immediate action that supports a longer term, well thought out vision. These plans are informed by data we collect both in and outside the world of myeloma research and care. There’s a lot to be learned from others, and we bring those insights together and prioritize what will work best for the patients we serve.
Q. What is missing in today’s industry that you think will help create more success stories and longer survival rates for people facing cancer or other life-threatening illnesses?
A. The sharing of best practices will be essential to creating more success stories. We also need to identify the white space where we can all come together and push for innovation. Nonprofits, academic centers, and industry are doing great work but wind up in siloes because there are no natural connections to share. It is never bad intent, just a broken system.
This is a fundamental issue we are addressing in the HBS Kraft Precision Medicine Accelerator. The goal of the program is to share best practices while solving the toughest challenges with strong leaders. In our Direct to Patient (DTP) workstream, we work directly with five cancer organizations: LUNGevity, Metastatic Breast Cancer Alliance, Pancreatic Cancer Action Network, Prostate Cancer Foundation and the MMRF. Together, we are accelerating our efforts in patient engagement and retention by sharing strong business practices and learning from experts in the direct-to-consumer (DTC) space. (Think Marriott and Reebok and Peloton help cure cancer.)
Project Baseline is another example of this broad collaboration. The bold aspirations of Project Baseline would be impossible without perspectives from patients, researchers, engineers, and clinicians. It’s this sort of exchange that fuels innovation.
Q. “Precision medicine” is a term commonly used in healthcare. What does “precision medicine” mean to you?
A. Precision Medicine is commonly thought of as the right drug for the right patient at the right time, and I agree with that – but I also think of it more broadly. As we progress with genomics and immunotherapy, everything about your healthcare is going to be precise. With this individualization, the role of the patient will continue to be elevated. They will be at the center of their information and care and will be in a position to advocate for themselves. Knowing your data and having your data advise you is so important.
One of the exciting aspects of Project Baseline is to measure more about the human health condition than anyone has done before, including behavior and social interactions. The consideration of the preferences of people is an essential component of precision medicine, and Project Baseline should give us great insight into how to return information to people in a way that is compatible with their needs.
Q. You’ve talked a lot about the importance of data sharing. Can you tell us more about why this is important?
A. Data sharing is important no matter where you are in the ecosystem because it makes lives better for patients. You need a critical mass of data to answer the most important questions of the patient and cancer community – the power of MMRF is the aggregation of data to make it available to the best researchers. Many groups have fragmented or siloed data that has some value, but when combined into larger, higher quality data sets that value is amplified. For academics, more high quality data may mean more validation of drug targets and new treatments. For community oncologists, this may mean better decision support tools in varied, on-the-ground situations.
Prioritizing data sharing is not just about looking back, though. If we agree on these principles and decide on the questions we can answer with this data, we’ll be able to design prospective collection in a way that makes it easier to standardize and harmonize the data from various sources. I see this becoming critical in immunotherapy. Our future will be a data driven world, and the more we can do to contribute to get the best insights from the data, the better.
Originally posted by Scarlet Shore, Product Manager, Verily