Rob Miani joined the MMRF team as Chief Financial Officer in 2016. Most recently he was the Vice President of Finance and Corporate Controller of Aptuit, LLC, a global contract research organization providing integrated early discovery to mid-phase drug development services in the pharmaceutical industry. Rob has over 20 years of leadership experience in the private and public sectors, holding managerial positions in the renewable energy, private equity, Internet and technology industries, including Davenport Newberry, Oak Investment Partners and INT Media Group. He began his career with Arthur Anderson LLP in the Assurance and Business Advisory Services Division. Rob is a CPA and received his BS degree in Accounting from Fairfield University.
Closing Knowledge Gaps to Optimize Patient Outcomes and Advance Precision Medicine
Precision medicine means treating each specific patient according to his or her own genetic and immune characteristics. The ability of patients to take advantage of the power of precision medicine advances in myeloma hinges on key decisions that they make early on in their disease course. The MMRF identified 4 steps where patient decisions early in their disease could greatly affect their disease journey. These decisions
- Which treatment center and doctor to go to
- Which tests to take to diagnose their disease and help identify their type of myeloma
- Which treatment or treatment combination to take, and in what order
- Whether to share their data
are critically important, and can affect not only their own disease outcomes but also influence how rapidly new precision treatments are accelerated into the clinic.
Based on this knowledge, MMRF Founder and Chief Mission Officer Kathy Giusti, along with the Direct-to-Patient Workstream Leader, Lori Tauber Marcus, who has decades of experience in consumer marketing and is the Vice Chair of the MMRF Board of Directors, led 4 other cancer foundations in the Kraft Precision Medicine Accelerator (KPMA) at Harvard Business School in creating a 4 step patient roadmap. This roadmap, named the Right Track, is designed to help all cancer patients make the correct decisions early on in their disease, to improve their outcomes. The MMRF joined Lungevity, the Prostate Cancer Foundation, the Pancreatic Cancer Action Network, and the Metastatic Breast Cancer Foundation in developing the Right Track program, confirming the 4 vitally important common steps that all cancer patients can take to improve their care and accelerate precision medicine. Learn more here.
Similar to the earlier research conducted by the MMRF, as part of this effort, the KPMA team next wanted to learn how much cancer patients already knew about these 4 steps, and at which steps patients needed more education and help in navigating their disease journey. The team of 5 cancers conducted additional research; the results were published recently in The Cancer Journal and authored by Kathy Giusti and Anne Quinn Young, Senior VP of Marketing and Communications at MMRF (Abstract). This research
- Included 50-100 patients from each of the 5 cancers in the team
- Included patients who were diagnosed within the last 12 months
Although the 5 cancers are very different, the results of the research showed similarity in patient knowledge and attitudes across all 5 cancers. The results showed that
- Instead of choosing a doctor at a NCI-designated cancer center, or at a clinic where many patients with their own type of cancer are seen, the majority of cancer patients simply choose a doctor that they are referred to
- While the majority of patients are familiar with the term “precision medicine”, most do not understand what this actually means, and are not sure whether they have undergone genomic testing
- Fewer than 15% of patients are enrolled in clinical trials
- The majority of patients are very interested in sharing their health data, but do not know how or where to share it
The above results show areas where improved education and information may empower patients to more fully participate in their care plans with their care teams. These 4 areas are similar to those emphasized in the Right Track program.
We encourage all patients and caregivers to follow the Right Track to ensure optimum treatment, the best possible disease outcomes, and to help advance precision medicine to benefit all patients. Please also share this information with anyone who is newly diagnosed with cancer. For more information and support in following the Right Track, please contact our myeloma nurse navigators at our MMRF Patient Support Center (link: https://themmrf.org/multiple-myeloma/resources/talk-to-a-nurse/ .)
