Stakeholder Response Demographics
A total of 26 stakeholders that have previously or currently work with Fight CRC research advocates participated in the survey. The majority (65.38%) represented academia, followed by the National Institutes of Health (NIH) or the NCI (15.4%), non-profits (11.5%), pharmaceutical companies (4%), and the DoD (4%).
Of those working in academia, 46% self-identified as a Professor, Assistant Professor, or Professor Emeritus. Additional roles included:
- Consumer Reviewer Administrator
- Advocacy Relations Manager
- Associate Group Chair
- Program Directors and Managers
- Medical Doctors
Of the complete responses received, 37% indicated they were part of Fight CRC’s MAB, 63% were not part of Fight CRC’s MAB.
Figure one represents the different types of events in which respondents have engaged with research advocates. Those who selected “Other” have previously engaged with advocates through events such as committee meetings, guideline development panels and at conferences such as ASCO.
Different activities in which this group of stakeholders engaged with research advocates included:
- Reviewing a role-play script to help educate physicians on how to have a best practice shared decision-making conversation with their CRC patients.
- Developing guidelines in Mismatch Repair (MMR) and Microsatellite Instability (MSI) testing for patients being considered for immunotherapy.
- Providing commentary during meetings on what issues are important to them as patients and caregivers.
- Steering committee/task force reviews which are responsible for reviewing clinical trial protocols for approval.
- Developing an EAO CRC research agenda.
- Reviewing an R01 proposal for clinical trials.
- Serving on peer review panels alongside scientific reviewers to provide their input on the potential impact a proposal may have on the community if successful.
Performance of Research Advocates
On a scale of one to five, with one being completely unprepared, and five being completely prepared, we asked stakeholders to evaluate the research advocates. The average score of respondents was 4.51 out of 5.
Additionally, participants were asked to rate their level of agreement (strongly disagree to strongly agree) on the following statements regarding their interactions with research advocates.
- 89% strongly agreed or agreed that the research advocate was engaged in the discussions at an appropriate level and that the group benefitted and saw the value of having a patient advocate voice.
- 5% strongly agreed or agreed that the research advocate showed up with the right orientation and training to serve in this role as a patient representative.
- 84% strongly agreed or agreed that the research advocate provided a unique perspective that wouldn’t have otherwise been captured.
- 100% strongly agreed or agreed that the research advocate was willing to learn and that they would engage with Fight CRC research advocates again.
Responses highlighting how the research advocate contributed to shaping the conversation or leading to change included:
The input was invaluable in identifying in particular 1) the level of detail some patients may wish to have explained by their physician and 2) phrases that were too technical and needed to be updated to be more clearly understood by patients.
The [research advocate] set the tone for an honest, empathetic conversation regarding the realities of living with a cancer diagnosis and how the lives of family members and loved ones are changed following a diagnosis. Additionally [the advocate] brought up multiple ideas for types of educational tools that patients might find valuable.
We also asked what value the Fight CRC research advocates provide the scientific community and their role in cancer research. Responses included:
The CRC advocates have not only provided input into CRC, but also in other Gastrointestinal (GI) cancers. They are willing to learn about other cancers and contribute on a wider scale. They have been so essential since we have had many concepts to review in the past six months. They have been contributing and adding value with good written reviews and presenting their reviews on the phone calls with our team.
There are two values that I think research advocates will bring to research: (1) constantly reminding those that design and perform research that there are real people who will benefit from their work and (2) pointing out that sometimes what doctors/researchers assume that patients prefer is not actually what patients prefer.
Areas of improvement for research advocates that the scientific community suggested included better representation of the collective patient experience and not a single person’s perspective, preparing ahead of time the message that advocates want to convey, and increased biologic and therapeutic knowledge.
Overall, on a scale of one to five, with one being completely unsatisfied, and five being completely satisfied, the average ranking was 4.68. Additionally, 95% of respondents indicated a 4- or 5-star rating of their engagement with research advocates.
Research Advocate Demographics
Fight CRC’s RATS program consists of 21 active and engaged research advocates. Currently, 33.3% are stage III survivors, 33.3% are stage IV survivors, and 33.3% are caregivers. Two of the research advocates who are caregivers are also medical professionals.
A total of 14 research advocates completed the evaluation survey.
In order to understand how the RATS program affected the research advocates’ learning experience, we evaluated both change in knowledge and change in confidence. These metrics help measure the contributions of the RATS program on direct outcomes, including the impact of the training program.
The top three topics that advocates increased their knowledge of the most included checkpoint inhibitors (56% increase in knowledge), the gut microbiome (55% increase) and precision medicine (55% increase). The three areas where research advocates gained the most confidence included joining a panel, board or research study as a research advocate (59% increase in confidence), being able to set realistic and timely goals as a research advocate (55%) and representing the collective patient voice as a research advocate (55%).
From the research advocate’s perspective, the majority saw the program having value and impact on research. Comments included:
The RATS program is a great way to get prepared advocates onto panels and other volunteer opportunities which require a knowledgeable patient voice. It provides support and peers to bounce ideas off of. It also provides info regarding open opportunities. All of these things can help push forward research by putting a face to the work researchers do and by helping to increase clinical trial accruals.
Experience and training gained from a reliable source. When people note you are a "RATS" member, they know you are in the group of lifelong learning and that you have put time and effort into your advocacy journey. The connections as well as knowledge of our fellow RATS is loaded with experience and knowledge.
Research advocates were asked to rate how well the RATS program equipped them to sit on panels and provide effective input on a scale from one to ten (one being not well prepared to ten being very well prepared). The average score was 8.4. Additionally, 100% of respondents believed their authentic patient voice has been taken seriously by the research community.
Research advocates identified several gaps in the RATS program which included creating a mentorship program, continuing to grow the use of community tools and resources, additional basic science training and annual in-person meetings.