Cancer Precision Medicine

Engaging Patients and Other Stakeholders to Develop a Patient-Centered Research Agenda for Cancer Precision Medicine

Project Abstract >

Inherent in cancer precision medicine (CaPM) is the hypothesis that cancer treatment could be markedly improved if cancer therapies were guided by a tumor’s genetic makeup. Although there are countless articles in the press reporting miraculous anecdotes of patients treated with precision medicine, there are many challenges to overcome before all patients are able to benefit.

The project team’s proposed solution is to 1) convene a group of stakeholders including current or former cancer patients and their caregivers, payers, oncologists, nurses, genetic counselors, and researchers with expertise in genomics and cancer research from Henry Ford Health System and Health Alliance Plan in the Metro Detroit Area as well as national industry leaders in drug development and genetic informatics and 2) come to a consensus definition and understanding of CaPM and use that knowledge to collaboratively determine a patient-centered research agenda that will meet all stakeholders’ needs.

The team’s long-term objective is to encourage patient-centered research as it relates to CaPM. In order to accomplish this objective, this engagement award will focus on the following short-term objectives:1) educate all stakeholders on CaPM and patient-centered outcomes research (PCOR) and comparative effectiveness research (CER), 2) solicit suggestions from each stakeholder group regarding future PCOR/CER questions to address knowledge gaps and cooperatively prioritize a research agenda, 3) with representatives from all stakeholder groups, write a cohesive narrative summarizing this research agenda, and 4) develop dissemination strategies tailored to each stakeholder group.

In order to achieve these objectives, the team has already identified project co-leads representing each type of stakeholder to facilitate recruitment and engagement within each group. Additionally, prior to the start of team meetings, investigators will educate patients and their caregivers on how to participate on the team and explain key communication and active listening skills. The project team will also recruit and educate the payer, provider, researcher, and industry stakeholders on skills for engaging with patients on teams. The investigators will hold a “Kickoff Symposium” to help build relationships and facilitate co-learning.

The team will utilize strategic planning and nominal group techniques to elicit and prioritize ideas and, in the second year of this award, form workgroups for two tracks: 1) writing the cohesive narrative or “white paper” and 2) developing the dissemination plan. Workgroups will be supported by staff from the Patient-Engaged Research Center at Henry Ford Health System.

By the end of this project, at least four tangible outcomes will be produced: 1) a pre/post engagement and learning survey from the Kickoff Symposium that will establish that the intended goal of co-learning was achieved and identify areas for improvement, 2) a prioritized list of PCOR/CER questions, 3) a collaboratively written cohesive narrative summarizing these questions and their importance will jointly show the importance of reciprocal relationships and demonstrate engagement using cross-stakeholder partnerships, and 4) a national plan for dissemination approaches tailored to each stakeholder group will encourage knowledge transfer among team members and between the team and the public. Collectively, these outcomes will be a foundation for future patient-centered research in the quickly evolving field of CaPM.

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