Advocacy Group Demonstrates that Educating Patients Improves Their Treatment Decisions

Why do some patients succumb to their cancer in a matter of months, while others with the same disease live for years or even decades?

These disparities, we now know, can be explained by the mutated genes and other abnormalities that drive a cancer’s growth and fuel its spread. Patients can increasingly be matched to precision therapies that target these aberrations. Just as importantly, we are learning that these survival disparities are not explained solely by patients’ genetic make-up, but by the decisions they make throughout their cancer journeys — decisions that affect their ability to benefit from future treatment breakthroughs, including precision medicines.

As the founder of the Multiple Myeloma Research Foundation (MMRF) — and as a multiple myeloma patient myself — I have counseled countless patients who struggled to make sense of their cancer journeys, particularly in the new world of precision medicine. Along the way, I identified several key decision points where I saw patients repeatedly trip up or get stuck. Often, they became paralyzed trying to find the right doctor and understand their diagnostic testing, never mind making sense of treatment and clinical trial options. Because the MMRF strives to improve patient outcomes by optimizing this journey, we wanted to confirm that our work was making a difference.

We recently conducted a study to determine how patients perceive key decision points that are germane to their diagnosis and treatment and how these decisions are affected by their involvement with the MMRF. We enrolled two groups of patients, those who were affiliated with the MMRF and those who were not, to assess and compare their experiences with 10 previously identified decision points. Results, published recently in the American Journal of Hematology/Oncology, showed meaningful differences between the groups, underscoring the vital role that the MMRF plays in keeping patients well-informed and actively engaged in their care — often from the critical moment of their diagnosis. We extrapolated from this that other third-party organizations that provide education and support to patients with various forms of cancer may make a similar difference.

First, MMRF-affiliated patients were much more likely to use disease-related criteria, including choosing a physician who is recognized as a clinical expert in the field (28 percent), compared to non-affiliated patients (14.3 percent) when choosing their doctors. In addition, twice as many MMRF-affiliated patients (56 percent) reported seeking a second opinion after receiving their initial diagnosis than non-affiliated patients (27.3 percent). MMRF-affiliated patients, compared to non-affiliated patients, were more than two times as likely to report having undergone genomic testing (68 percent versus 32.5 percent). Furthermore, almost three times as many MMRF-affiliated patients (29.6 percent) requested a PET scan at the time their diagnosis than did non-affiliated patients (9.8 percent). MMRF-affiliated patients were far more likely to report participating in a clinical trial (15 percent) compared with non-affiliated patients (3.9 percent). Finally, data sharing was important to MMRF-affiliated patients, with only 1 percent reporting an unwillingness to share data, compared with 14.3 percent of non-affiliated patients.

While validating the important role the MMRF plays in educating patients, this study revealed knowledge gaps in several keys areas — for instance, a low awareness of important tests, particularly those involving genomics — that may hinder the advancement of precision medicine breakthroughs. The study also revealed the MMRF has a highly educated patient base, which highlighted the need for us to expand our outreach to engage more diverse communities.

As the MMRF works to build a strong “precision path” for multiple myeloma patients, we will also work closely with fellow research and support organizations, as part of the Kraft Harvard Business School Precision Medicine Accelerator, to determine how to best apply these learnings across other cancers. We hope that others working with and on behalf of the 1.7 million people who will be diagnosed with cancer this year alone will join us. Only then can we guarantee that all patients, regardless of what cancer they have or what their genetic make-up looks like, have the very best shot of beating their disease.

Kathy Giusti is founder of the Multiple Myeloma Research Foundation and the Multiple Myeloma Research Consortium.