October 07, 2019
When our group first met last year, the vision was simple: Bring researchers and patients together to improve cancer research. We envisioned meaningful partnerships among patients, clinicians and researchers where everyone contributes their unique perspectives to generate meaningful cancer research.
The group, called PIVOT (Patient and Investigator Voices Organizing Together), is a relatively new effort at The University of Kansas Cancer Center. Its purpose is to ensure cancer center scientists receive advice and input directly from patients, ultimately leading to research that better meets patients’ needs.
PIVOT is led by a group of dedicated patient partners, also called research advocates, who have a lived experience of cancer. They are cancer patients and survivors, and family or friend caregivers who help navigate and advocate for their loved one. These research advocates provide a collective perspective about what’s important to cancer patients by drawing from both their own personal cancer experience and their connections to other cancer survivors.
Just like PIVOT, which is a collaborative effort, this blog post is a compilation of multiple voices telling PIVOT’s story.
How can a research advocate help?
Engaging patients and their families enriches the entire spectrum of cancer research, from research that takes place in the lab to research in our communities. For example, in clinical trials, research advocates can give advice on topics such as informed consent and how research protocols might affect study participants. Advocates may bring up concerns that researchers might never have thought about. They can alert researchers to study procedures that might be too burdensome for patients, such as filling out lengthy or complicated questionnaires and requiring too many in-person visits, biopsies or blood samples.
Patient makes the most out of her cancer diagnosis
Cancer survivor Michele Longabaugh participates in the PIVOT leadership team’s meetings from Wichita via videoconferencing technology. When a researcher needed a patient perspective to refine their project’s goals, Michele was matched as a research advocate to the study. Because the research aims to improve rates of vaccination against human papillomavirus (HPV), a virus that causes some types of cancer such as hers, she was personally invested and eager to help.
“It’s rewarding to know that you’ve helped other people. It gives your cancer some meaning. I should be dead right now, but I’m not," says Michele. "I used to ask myself why I’m here. Now I know. It's to give a voice to the silenced and those who will be silenced in the years to come. I might never see the result of this in my lifetime, but it’s going to help somebody else in the future. My voice can live forever because I’m a part of PIVOT."
Advocate carries the torch for his father
Broderick Crawford is inspired by his experience caring and advocating for his father, a prostate cancer patient. Broderick has partnered with researchers at The University of Kansas for many years. His focus has always been to give a voice to minorities, who are underrepresented in medical research as both participants and as research team members. Broderick believes that increasing the role of research advocates is crucial in bridging the divide that has long existed between the research community and minority communities.
Since his involvement on PIVOT’s development team, Broderick has formed 2 new research partnerships at The University of Kansas Cancer Center.
The 1st is a basic science study looking at biological differences in African-American smokers versus Caucasian smokers to better understand disparities in smoking, quit rates and cancer risk.
The 2nd partnership involves serving as a community voice on a prostate cancer clinical trial that aims to improve targeted treatment for African-American men, who are disproportionately affected by the disease. Crawford intends to increase 2-way communication and trust between African-American patients and researchers, which will in turn improve the research and the outcomes for these patients.
Lending a unique point of view to cancer research
It’s clear this work is meaningful to those who have experienced cancer firsthand. However, many patients and caregivers who are new to research advocacy underestimate the value of their real-life expertise living with cancer and how that experience can impact research. They often ask, “What could I add to cancer research? I’m not a scientist and I don’t have training.”
Dr. Danny Welch, a laboratory-based researcher who studies metastatic breast cancer at the cellular level, has worked with advocates for several years. Advocates have made vast contributions in his lab by mentoring junior investigators, writing educational guides for clinical trials, reviewing grant proposals to make sure they address patient concerns, and teaching investigators how to communicate clearly with the public.
“As a basic researcher, my colleagues and I work to understand the biology of cancer. We get to know cells very intimately. But it is people’s lives we must seek to substantially impact," says Dr. Welch. "Getting to know the people our work should benefit inspires and enriches our research and our lives."
"A meaningful advocate-scientist relationship is mutually beneficial and rewarding," he adds. "Working with many advocates throughout my career makes me realize how we each bring something uniquely vital to the table. We are in this battle together – fighting a common, multifaceted enemy that can best be conquered by working together and for each other."
Engaging patients and their families is something that researchers across the country are doing more and more thanks in part to research funders encouraging and requiring it. When we created PIVOT, we wanted our efforts to be far-reaching, so we intentionally recruited a diversity of patient voices. It’s this broad reach that makes PIVOT so unique:
- PIVOT is the only cancer center initiative in the country designed to include a balance of diversity of cancer types and cancer stages. For instance, members include those who are considered at high risk because of family history and genetics through members dealing with cancer that has spread (metastatic cancer).
- PIVOT also includes patient partners who live in urban, suburban and rural communities, of different ages, genders, races, ethnicities, socioeconomic status and educational backgrounds. Everyone interested in contributing to cancer research is welcome to participate at whatever level is comfortable for them.
- Cancer research happens in laboratories, clinics and communities. We seek partnerships across the spectrum of cancer research from the bench to bedside and beyond.
The next step in PIVOT’s growth focuses on developing educational resources and programming to support meaningful partnerships between research advocates and researchers. The University of Kansas Cancer Center is committed to learning from and with patient partners.
Patients, survivors and those who support cancer patients have a tremendous amount of wisdom to share. Their journey and insights shine a light on how we can improve our research. We’re proud to be leading the nation in developing an engagement model, like PIVOT, that may influence how other cancer centers partner with patients, families and surrounding communities.
Do you want to get involved in PIVOT? Email us at firstname.lastname@example.org.