Establish a Network for Direct Patient Engagement

Cancer research relies on the participation of people with cancer, cancer survivors, and healthy volunteers. Engaging patients and the public in cancer research is critical to understanding the biology of cancer, how to prevent and treat it, and how to deliver care to all people with cancer.  

Patients can participate in research by donating biospecimens (e.g., tissue and blood samples) and medical history data and by participating in research studies, including clinical trials. Engagement can also include providing patients with information about opportunities to participate in research, involving them in the design and conduct of research studies, and providing information back to study participants about research progress.

Increased participation in research studies and greater diversity among participants are key elements of this Cancer Moonshot recommendation. Engaging a diverse set of patients in cancer research is critical to ensure that research and clinical trials can benefit people from all communities.

NCI Consortia Initiative: Response to Cancer Moonshot Recommendation to Establish a Network for Direct Patient Engagement

To better understand cancer and improve access to therapy, patients and researchers need to work together to advance cancer research and care.

The research programs initiated under this recommendation incorporate patient engagement to strengthen research efforts through broad and diverse participation.

At the 2022 AACR Annual Meeting was a session describing several initiatives that were launched in response to the recommendation to Establish a Network for Direct Patient Engagement.

Cancer Moonshot Biobank

Biospecimens donated by people with cancer are an essential resource for conducting and accelerating cancer research. NCI created the Cancer Moonshot Biobank to collect tumor and blood biospecimens from a diverse patient population over the course of their cancer treatment. Biospecimen data, clinical data, sequencing data, and clinical reports from molecular profiling assays, as well as histological and radiological images collected in the biobank will be made available to the research community. 

Patient advocates and oncologists provide critical and regular input to the biobank. To return value to patient participants, the biobank provides comprehensive tumor profiling to patients and their physicians. The results may be used to help guide patient care and provide information about eligibility for clinical trials. 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 others do not.

NCI Comprehensive Oncology Network Evaluating Rare CNS Tumors (NCI-CONNECT)

NCI-CONNECT addresses challenges and unmet needs of adults with rare primary tumors of the central nervous system (CNS) by creating partnerships between patients, advocates, and providers. The network includes 33 institutions spread across the United States and partnerships with 9 national and international advocacy organizations.

The NCI-CONNECT Clinic brings together patients with similar rare CNS tumor types for special services. These patients receive genetic testing and counseling, a review of their diagnosis with advanced molecular testing, and the opportunity to participate in a support group.

NCI-CONNECT currently has 10 active clinical studies and trials, including an online study to improve the understanding of outcomes and risk factors related to rare CNS cancers. There is also a natural history study to better understand these tumors, observational studies to measure if an intervention helps improve patient outcomes, and several treatment trials. Notably, results from one of these trials, the first prospective clinical trial for adults with ependymoma, has led to a change in treatment guidelines.  

NCI-CONNECT has an educational website, available in English and Spanish, for patients to learn more about their disease. The network hosts workshops that integrate the patient perspective by engaging patients in planning, presentations, and meeting publications. NCI-CONNECT also developed a symptom tracking mobile app called My STORI™ and has a private Facebook group called NCI-CONNECT Community to help patients connect and learn from each other.

Information about NCI-CONNECT activities can be found on Twitter at @NIHBrainTumor  and the NCI-CONNECTions blog.

My Pediatric and Adult Rare Tumor Network (MyPART)

MyPART focuses on research across a range of pediatric, adolescent, and young adult rare solid tumors. Studying and treating rare cancers is especially challenging and requires a multi-institutional effort. MyPART is made up of a multidisciplinary team that uses a patient-centered approach to improve the engagement of patients in the research process. The network partners with 21 advocacy groups to connect with patient communities, provide education about the importance of rare tumor research, and share information and resources to empower patients living with a rare tumor diagnosis.

As part of the Natural History Study of Rare Solid Tumors, MyPART has developed a pipeline for the collection and analysis of clinical data, patient-reported data, and biospecimens from pediatric and young adult patients with rare tumors. Additionally, MyPART brings together scientists, advocates, clinicians, and FDA representatives for rare tumor workshops. MyPART also hosts rare tumor clinics that bring patients and their families to the NIH Clinical Center to meet with experts and connect with others experiencing the same rare tumor diagnosis.

More information about MyPART activities can be found on Twitter at @NCI_CCR_PedOnc and through the monthly newsletter, The MyPART Minute.

Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network

The PE-CGS Network is a collaborative effort between researchers and participants to enable new discoveries in cancer genomics. PE-CGS engages patients and survivors in cancer genome sequencing research that can address important knowledge gaps in the understanding of genomic changes in tumors. Participants and their communities have been involved in the PE-CGS Network since its inception, and these partnerships will continue throughout the length of the network. The data collected by the network will advance the understanding of rare cancers, highly lethal cancers, cancers with an early age of onset, cancers with high disparities, and cancers in understudied populations.

The five PE-CGS Research Centers are building an evidence base for approaches to engage various patient and survivor populations to participate in genomics research studies. The PE-CGS Coordinating Center manages collaborative network activities, performs outreach activities to the broader community, and develops best practices and procedures for the network. Details about the PE-CGS Research Centers and Coordinating Center are available in the Awarded Projects section below.

Participate in Cancer Research 

The Participate in Cancer Research section was developed to inform, educate, and motivate people to consider taking part in cancer clinical trials and studies. It is a destination for information about the different types of research studies people can join, what to expect as a participant, and the ways a person can choose to be a partner in making progress against cancer. Stories from participants and researchers, along with cancer research news, provide real-world examples of participation and its potential impact.

Workshops and Symposia to Engage Patients

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, physicians, 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.  

Symposium on Personal Control of Genomic Data for Research

For individuals who want to make their personal genomic data available for research, analysis, or interpretation, little support exists to answer questions, provide technical support, or give feedback on the value of their data. This 2-day symposium brought together advocates, researchers, policy leaders, and the public to explore the impact of personal control of genomic data on research, clinical care, and participants’ well-being and engagement.

Recordings from the event can be found in this YouTube playlist.

Engaging Older Adults in the NCI Clinical Trials Network: Challenges and Opportunities

Age is the greatest risk factor for developing cancer, though participation in clinical trials does not reflect this. There is a need to address barriers to enrolling older adults in clinical trials. This virtual meeting assembled oncologists, geriatricians, statisticians, clinical trialists, clinicians, and patient advocates to discuss trial design, gaps in the use of geriatric assessment in clinical research, infrastructure needed to enhance accrual, and engagement of key stakeholders.

Awarded Projects