Research/key-initiatives/moonshot-cancer-initiative/implementation/patient-engagement

Establish a Network for Direct Patient Engagement

As research has demonstrated the heterogeneity of cancer, it has become increasingly beneficial to understand the unique profile of a patient’s tumor to help guide treatment decisions. However, barriers to the routine molecular characterization of tumors, especially in underrepresented racial/ethnic minority groups and other underserved populations have resulted in a lack of understanding about cancers in all populations.

The panel recommended establishing a network for direct patient engagement that could provide cancer patients with the opportunity to receive comprehensive tumor profiling, the results of which could be entered into a linked network of databases. The information obtained would be used to help researchers better understand what interventions work, in whom, and in which types of cancer. Engaging patients and researchers to work together towards a shared vision and implementation of the network was considered to be critical to the success of such a network.

The proposed network could also "pre-register" patients for clinical trials by enabling them or their physicians to be contacted if their tumor’s profile fits the eligibility criteria for a clinical trial. By helping patients enroll directly, the network could reach a broader and more diverse group of patients, which would provide a truer representation of the patient population and improved therapy options for all.

Ultimately, the hope is that such a network would expand access to advanced tumor profiling to improve the identification and treatment of cancers, as well as to improve data sharing and knowledge about cancer outcomes across diverse patient populations.

NCI has funded programs and workshops that align with this recommendation to increase direct patient engagement:

The Cancer Moonshot Biobank

Biospecimens donated by cancer patients are an important resource for understanding and accelerating cancer research. NCI is creating the Biobank to collect tumor biopsy and blood biospecimens from a diverse patient population. Researchers will use the biospecimens and associated data to help answer pressing questions in cancer research, including why some patients respond to a particular cancer treatment and some do not. The Biobank will provide clinical tumor molecular characterization tests to participating patients and their physicians. The test results may be used to help guide patient care and will also provide information about clinical trials eligibility. The Biobank will make the biospecimens and associated data, including the molecular characterization data, available to researchers to accelerate progress in treating cancer. The Biobank team is reaching out to community and patient representatives and care providers to better understand and incorporate their perspectives about the Biobank.

NCI Rare Tumor Patient Engagement Network

This NCI intramural project is building a network of researchers, cancer patients, and advocacy groups to advance the research of rare pediatric and adult tumors. This collaborative effort is collecting and analyzing tumors from patients with rare cancers that will inform new research studies of these tumors and promote the development of new treatments for rare cancers. The network is also translating findings into new clinical trials for patients with rare tumors.

The network is working to engage patients with rare cancers by expanding access to clinical trials across a diverse population of cancer patients and by providing patients with greater access to their own data and the results of clinical trials.

Through clinics and symposia, researchers are directly interacting with patients in the network, leading to new discoveries about the relationships between tumor biology and patient symptoms, as well as new clinical trial endpoints.

The NCI Comprehensive Oncology Network Evaluating Rare Central Nervous System Tumors (NCI-CONNECT) is a program within the Rare Tumor Engagement Network. NCI-CONNECT is using patient-advocacy-provider partnerships to improve the understanding and treatment of rare central nervous system cancers in adults.

This initiative also includes MyPART: My Pediatric and Adult Rare Tumors Network. This program within the network is focusing on research across a range of pediatric, adolescent, and young adult rare solid tumors. MyPART is teaming with advocacy groups to raise rare tumor awareness among researchers and increase access to biospecimens for rare tumor research.

Workshop on Social Media and Clinical Trials

Many cancer patients are unaware of clinical trial opportunities and many oncologists are uncomfortable raising clinical trial enrollment options with their patients. Clinical trials participation remains particularly attenuated in minority and traditionally underserved communities including elderly and rural populations.

At the Crossroads of Social Media and Clinical Trials: A Workshop on the Future of Clinician, Patient and Community Engagement was held on June 7–8, 2018. Nearly 170 clinicians, researchers, health care providers, patient-advocates, and cancer survivors gathered on the National Institutes of Health (NIH) campus, with an additional 990 people watching via webcast, to exchange knowledge and synthesize new ideas for improving education and awareness about cancer clinical trials in the community through the use of social media.

At the Crossroads of Social Media and Clinical Trials: A Workshop on the Future of Clinician, Patient and Community Engagement

During this highly interactive workshop clinical trial experts, community oncologists, cancer advocates, and patients, as well as social media and communications experts explored innovative ways to successfully connect and engage with patients, physician and the community at large online. By sharing experiences and planned initiatives, participants considered ways to enhance awareness and understanding of clinical trials through social media.

Executive and full summaries of the two-day proceedings are available for download:

At the Crossroads of Social Media and Clinical Trials Executive Summary

At the Crossroads of Social Media and Clinical Trials Workshop Summary

Archived recordings of the workshop can be accessed through NIH Videocast:

At the Crossroads of Social Media and Clinical Trials: A Workshop on the Future of Clinician, Patient and Community Engagement (Day 1)

At the Crossroads of Social Media and Clinical Trials: A Workshop on the Future of Clinician, Patient and Community Engagement (Day 2)