"Research saved my life and now I get to be a part of research without having to get my PhD," said Jemma Cabral, two-time cancer survivor and research stakeholder volunteer since 2012.
Jemma is one of approximately 40 lay reviewers, or stakeholders as we call them, participating in the peer review process for the American Cancer Society's research program. Stakeholders are individuals without formal science or oncology training who have a strong interest in cancer research. Stakeholders bring with them a personal experience with the disease which could include being a survivor, having a family member with cancer, or serving as a caregiver for a person with cancer. Applications for this important volunteer role are currently being accepted.
For Jemma, the experience needed for this role came from her journey with Hodgkin lymphoma in 2002, when she was just 23 years old. She relapsed a year later and underwent a stem cell transplant before going into remission. Jemma started her volunteer involvement 12 years ago, with the Society's Relay For Life program. Her service spanned 25 Relay events in 10 different states, Canada, and Puerto Rico. "It was 2009 and Relay was turning 25," explains Jemma. "I was turning 30 so I decided to go to 25 Relay events to celebrate."
In 2012, Jemma took her volunteering to a new level when she applied for and was accepted to serve as a stakeholder. "Being a stakeholder, you actually get to see first-hand where the money is going," she said. "As someone who has had cancer, I get to speak up about what the experience was like, and how research can change it."
Jemma started her role on the Health Policy and Health Services Committee. "I was very intimidated at first, sitting in a room with a group of people who I knew were very intelligent," said Jemma.
She realized her experience would come in handy when they started talking about access to treatment and screening. "When I had my stem cell transplant, I was working for a huge corporation and had outstanding benefits," she remembers. "I didn't pay anything except for co-pays. I didn't have the money in my back pocket to pay for the treatment if I didn't have such great benefits. I was lucky to have that coverage; others are not so fortunate," she said.
Nominations for new stakeholders are being accepted through September 15
To nominate an individual to serve as a stakeholder, please fill out this form and email it to Joe Cotter, Research Constituent Engagement manager, at email@example.com.
Since 1999, the Stakeholder Program has supported the Society's leadership role in advancing cancer-related research and health professional training by incorporating input from lay individuals about the cancer experience into discussions about scientific and health professional training funding. Additionally, by ensuring such input on Society-funded research, this Stakeholder Program offers an opportunity for volunteers to understand and share how the peer review process affects the development of new ideas and breakthroughs in cancer research, ultimately benefitting the lives of cancer patients and their families.
Read more about the Stakeholder Program.
Employees of the American Cancer Society are members of the Society's National Board of Directors are not eligible to serve. National Board members are the only volunteers who can’t apply, and that's because they ultimately approve research funding decisions.
The two main goals of stakeholder participation on peer review committees are to:
- Represent the cancer patient perspective in the peer review process.
- Develop advocates who will return to their communities with a unique story to tell about the value of the American Cancer Society's Extramural Research and Training program.
Desirable Characteristics of a Stakeholder
A potential stakeholder should:
- Possess a willingness to embrace the broad perspective of cancer research and training used by the Society in its grant funding.
- Be able to participate in training for serving as a peer reviewer.
- Have demonstrated effectiveness in interacting with groups as a leader or participant in a managerial, professional, or educational capacity.
Stakeholders typically do not have advanced formal training in the biological, clinical, or social science topics reviewed by the peer review committees on which they serve. In instances where stakeholders do have professional credentials, they should not expect to participate on a peer review committee focused in areas directly related to their cancer research or health professional training. This is especially important for nurses and medical doctors with training in oncology, or people with doctorate levels of education and expert training in the life sciences related to cancer research. Participation on peer review committees closely aligned with a stakeholder's profession is viewed as a possible conflict with the role of stakeholder.
Stakeholder Time Commitment Requirements
Potential stakeholders should be able to commit to:
- Participating in Society-sponsored training for newly selected stakeholders – through participation in the e-learning modules on the Society's Volunteer Learning Center and by visiting Atlanta to observe actual peer review in January 2018.
- Serving for two years as a member of a peer review committee, from June 2018-May 2020. This includes participating in peer review committee meetings each year in January and June.
- Preparing for peer review committee meetings. This entails reading the sections of grant applications that deal with cancer relevance—and being prepared to comment on the cancer relevance—prior to the peer review committee meeting.
Stakeholder Nomination and Selection Process
Nominees will be asked to complete a short questionnaire and submit two letters of recommendation as part of the Selection Process. Each nominee will be interviewed over the phone. We anticipate that 13-15 stakeholders will be selected from the pool of nominees. Nominees and Divisions will be notified of the stakeholder selection results in October 2017.
Questions about the Stakeholder program and the nomination process can be addressed to firstname.lastname@example.org.
PHOTOS: Pictured in the top photo are attendees of the March 2017 Countil for Extramural Grants meeting. From left,Wafik El-Deiry, MD, PhD, FACP; Iswar K. Hariharan, MBBS, PhD; Carmen R. Green, MD; James R. Cerhan, MD, PhD; ACS CEO Gary Reedy; Jemma Cabral; Dave Wesley; and Sarah Gehlert, PhD. Pictured in the smaller image is Jemma Cabral.