Fight Colorectal Cancer (Fight CRC) appreciated the opportunity to host a Virtual Moonshot Summit via a Facebook event on June 29, 2016. In total, 76 people from all over the country participated. Patients, survivors, co-survivors, founders and executives of national non-profit organizations, medical professionals, research advocates and researchers attended our event. Participants represented a variety of backgrounds, allowing for well-rounded discussion from multiple perspectives.
Here are the highlights from our online discussion. This is not an exhaustive list.
As an advocacy organization we work to advance treatment for colorectal cancer patients and appreciate the opportunity to share suggestions and recommendations to The White House and Vice President Biden.
Putting the patient at the center of access and care
There is a clear need to integrate the collective patient voice into all research efforts both for efficiency and effectiveness. With so much attention focused on patient-centered research, there is a need to prepare patients for this level of engagement.
- Fight CRC’s Research Advocacy Training and Support Program (RATS) trains patients about the research process thus enabling them to effectively represent the patient perspective in a variety of settings. Through collaboration with universities, NCI-designated centers and industry partners, the RATS program addresses academic, industry and regulatory agency issues.
Create and strengthen a payment model that rewards quality and value of care versus quantity of care.
- We need to identify what patients’ value and how they define values as it relates to treatment and payment for treatment of their care. Advocacy groups like Fight CRC and others across cancer types play an important role in their ability to reach patients and collect qualitative data to learn about what “value” means to colorectal cancer patients and survivors. We will be doing this throughout summer 2016.
Support access for all patients, both rural and urban, to connect with a trained navigator through the cancer continuum.
- A fundamental issue we see and hear is that patients don’t know to ask for a navigator once diagnosed. Fight Colorectal Cancer is working to identify educational opportunities for patients to learn about asking for a navigator. This will help them identify potential clinical trial opportunities.
Recruiting and retaining participants in clinical research:
Disseminate tools to educate patients on what clinical trials are and what they entail. This will help reduce fears and misconceptions. Patients continue to say they didn’t know trials were an option. We need to support PSAs, webinars, educational materials and tailored messages for sub-populations. (Dr. Edith Mitchell led a free webinar on increasing diversity in clinical trials on April 27, 2016)
Patients in late-state disease will turn to Clinicaltrials.gov. The site continues to challenge patients. Patients continue to ask for an easier, more transparent, process to find a clinical trial.
- Fight Colorectal Cancer is actively looking to find ways to engage both private and public organizations working to increase online searchablity of clinical trials, ensuring that the patient voice and perspective is included. The link between finding a trial and navigating the enrollment process is a vital area of focus for Fight CRC.
Expand support for funding mechanisms that involve patient input as important parts of the research process.
- An example of this type of research engagement has been the grants from the Patient-Centered Outcomes Research Institute (PCORI) which Congress authorized in 2010. PCORI funds research that offers patients and caregivers the information they need to make important healthcare decisions.
Solving the technical challenges to unleash the power of data:
Create online portals for researchers and clinicians to upload current studies and data. This may reduce duplication and will provide the opportunity for researchers to view studies to build upon or collaborate with.
- Example: Project Datasphere (https://www.projectdatasphere.org)
Incentivizing breakthrough research discoveries in cancer:
Provide funding mechanisms for expert working groups. There needs to be support to bring working groups together across many disciplines and institutions. Conveners can be academics, not-for-profits/foundations or healthcare institutions.
- The IO task force in colorectal cancer was led by Fight Colorectal Cancer in partnership with the Cancer Research Institute. Their work will result in a manuscript outlining research priorities for immunotherapy research in colorectal cancer to advance the work in this area.
Reward institutions and individuals for collaborating across organizations.
- Through our efforts in immunotherapy for colorectal cancer, we had to bring together a global multi-disciplinary team of experts across institutions to advance the science for colorectal cancer patients. More and more work needs to go into reducing institutional barriers for collaboration amongst scientists. (More on the IO Blueprint here.)
Disparities in Cancer Care
Implement targeted interventional efforts and recruitment strategies. Use tailored messages for research efforts. From the start of a study, health disparities among minority groups should be discussed and addressed.
- Fight Colorectal Cancer has engaged high-risk populations (to include diverse populations) and there is a clear need to support and assist more qualitative research efforts in partnership with the community to better reach and involve minority groups.
Supporting preventative health behaviors:
For colorectal cancer there is a rising need to address young onset colorectal cancer. The challenges lie both within the patient population and healthcare community when it comes to screening. Support for prevention is needed amongst patients under 50 who present signs and symptoms or have hereditary, familial, and genetic cancers.
- As an advocacy organization, we are seeing an increase in younger patients, and their issues are unique. Fight Colorectal Cancer engages in educational programing to increase awareness of young onset colorectal and support them once diagnosed.
Over 900 organizations have committed to the 80% by 2018 colorectal cancer screening goal. This campaign, 80% by 2018, has rallied hundreds of organizations committed to eliminating colorectal cancer as a major public health problem around a shared goal of reaching 80% screened for colorectal cancer by 2018.
- Fight Colorectal Cancer pledged support of this national effort early on to increase screening through better policies, educational and awareness efforts. (80% by 2018)
