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Closing Knowledge Gaps to Optimize Patient Outcomes and Advance Precision Medicine

Giusti, Kathy MBA*; Young, Anne Quinn MPH*; Lehrhaupt, Kerri BSc

doi: 10.1097/PPO.0000000000000319
Review Articles

Realizing the promise of precision medicine requires patient engagement at the key decision points throughout the cancer journey. Previous research has shown that patients who make the “right” decisions, such as being treated at a high-volume academic medical center, for example, have better outcomes. An online survey was conducted to understand awareness of and barriers to these decision points among patients with multiple myeloma and pancreatic, lung, prostate, and metastatic breast cancers. Survey respondents were identified by 5 participating foundations (multiple myeloma: n = 86, pancreatic: n = 108, lung: n = 56, prostate: n = 50, metastatic breast: n = 86) and recruited by an e-mail or social media invitation. Descriptive analyses were calculated, and the proportion of patients from each of the 5 groups was compared for each response category for each survey item. Consistent gaps in knowledge and actions were identified across all cancers evaluated in terms of finding the right doctors/team at the right center; getting the right diagnostic testing done before beginning treatment; engaging in the right course of treatment, including clinical trials; and in sharing data. Improving awareness of and changing behavior around these 4 decision points will allow patients to receive better care and contribute to the advancement of precision medicine.

From the *Multiple Myeloma Research Foundation, Norwalk, CT; and

Kantar Health, New York, NY.

Conflicts of Interest and Source of Funding: A.Q.Y. has stock/ownership in Bluebird Bio. K.L. is a consultant/advisor for and has received research funding from the Multiple Myeloma Research Foundation. For K.G., none were declared.

Author Contributions: Conception and design: K.G.,A.Q.Y., K.L. Collection and assembly of data: K.L. Data analysis and interpretation: A.Q.Y., K.L. Final approval of manuscript: All authors.

The original Multiple Myeloma Research Foundation study was submitted and determined exempt by an independent institutional review board (IRB) (Pearl IRB, Indianapolis, IN). Informed consent was obtained from all participants. Participants' information was kept confidential, and all identifiers were removed prior to submission for publication.

The views expressed in this manuscript are solely those of the authors and do not reflect an official position of the authors' institutions or those of the funding organization.

Reprints: Kerri Lehrhaupt, BSc, Kantar Health, 11 Madison Ave, 12th Floor; New York, NY 10010. E-mail:

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