Project Summary

Background: According to the National Institutes of Health (NIH), precision medicine holds promise for improving many aspects of health and healthcare. The introduction of the Precision Medicine Initiative in 2015 offers the opportunity for new partnerships of scientists in a wide range of specialties, as well as people from the patient advocacy community, universities, pharmaceutical companies, and others. There will also be the opportunity for a million people to contribute to the advancement of scientific research through the NIH's All of Us Research Program.

In August 2015, the National Cancer Institute (NCI) and the ECOG-ACRIN Cancer Research Group launched Molecular Analysis for Therapy Choice (MATCH). NCI-MATCH precision medicine clinical trial is exploring treating patients based on the molecular profiles of their tumors and is the largest, first-of-its-kind precision medicine cancer clinical trial to date. The NCI-MATCH trial will be completing accrual soon and the next large precision oncology trial will be designed.
In addition to great promise for patient benefit, there are burdens placed on the individual patient when making decisions on these new therapies and joining clinical trials testing these therapies. In oncology, there is a need for education to better understand the shift in traditional treatments (chemotherapy and radiation) to a more targeted, molecularly driven approach to therapies and clinical trial design.

Proposed Solution to the Problem: To gather the patient perspective for the design of future precision oncology trials, a symposium will be held November 8-10, 2017 at the Grand Hyatt at DFW Airport in Texas. The meeting will convene patient advocates serving on National Cancer Institute (NCI) Steering Committees, Task Forces and advocate members of the National Clinical Trials Network (NCTN). Select clinicians and research leaders active in precision medicine trials in oncology will be invited to discuss the benefits and barriers of these trials with the advocate invitees.

Objectives: The long-term objective of the Advancing Precision Medicine in Oncology Symposium is to utilize the knowledge and awareness of patient-centered issues in precision medicine that will inform trial design for future precision medicine trials. Other objectives are:

  1. Increase the knowledge of advocates who volunteer their expertise to the publicly funded clinical research system of the principles and issues of precision medicine in oncology
  2. Utilize a framework for gathering feedback from patient advocates about patient issues in precision medicine in oncology.
  3. Implement the PCORI principles of engagement (reciprocal relationships, co-learning, partnering and trust, honesty and transparency) in development of the symposium and dissemination of the results.
  4. Facilitate meaningful interaction and idea sharing between advocates and clinical trial leaders that will influence the design of precision medicine trials to address patient concerns and needs.
  5. Increase the knowledge of advocates in decision making roles about the issues and barriers patients and researchers face in participating in precision medicine trials.

Activities: Prior to the conference thought leaders in precision oncology will be interviewed and advocate invitees will be polled to determine knowledge needs and issue identification for the workshop agenda. Results from these interviews and polling will be incorporated into the meeting agenda.  The meeting will be interactive using audience response technology and facilitated discussions.

Outcomes & Outputs: A proceedings report will be generated and shared widely throughout the oncology patient and research organizations by various methods including web postings, social media and webinar presentations.

Patient and Stakeholder Engagement Plan: Patient advocates serving on the NCI Steering Committees, NCTN Cooperative Groups and NCI Task Forces are in a decision-making capacity for NCI sponsored clinical trials. These stakeholders are influential within their respective patient communities and are a source of information for researchers about patient preferences and experiences. They are also a source of information for their patient communities about research and disseminate educational materials about clinical trials and the latest research results. These stakeholders will be our invitees and will be full participants in all the learning events, discussion and idea storming in the think tank.

Applying the PCORI Engagement Rubric of: Reciprocal Relationships, Co-Learning, Partnerships and Transparency, Honesty and Trust, we will engage the advocates and NCI-MATCH Trial Principal Investigators and other precision medicine leaders to work together to provide essential ideas from the patient perspective for the next precision medicine trials.

Project Collaborators: Collaborators include ECOG-ACRIN Cancer Research Group, other NCTN group patient advocate committees, and precision medicine trial leaders.

Project Information

Mary Lou Smith, JD, MPA, MBA
Research Advocacy Network
$50,000

Key Dates

8 months
2017

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Last updated: March 4, 2022