The word “advocate” comes from the Latin “ad” meaning “to” and “vocare” meaning “voice”: “to voice.” In the fight against cancer, patient advocates are those who act as a voice on behalf of cancer patients. “Advocates channel the passion they have for making a difference for cancer patients,” according to the Research Advocacy Network.

The Research Advocacy Network (RAN) is a nonprofit organization that advances patient-focused cancer research by fostering interaction among advocates, researchers, and related organizations. RAN embodies a simple yet paradigm-changing perspective. “Focus research on the patient and the patient’s needs, not on the research and the researcher’s needs.” RAN co-founder Mary Lou Smith said. “It’s all about hearing the patient’s voice.”

Since 2003, RAN has been “bringing the voice of the patient to research for better cancer care.” RAN advances genuinely patient-centered research by developing a network of advocates and researchers who influence cancer research – from initial concept to patient care delivery – through collaboration, education, and mutual support. RAN is quintessentially the patient advocate’s advocate.

With more than 25 years working in the healthcare sector, Smith has become a pillar in the oncology community. She was honored by ASCO last year with the Partners in Progress Award which recognizes a person involved in patient advocacy activities that impact public awareness about cancer, its causes, cures, or treatment, or activities that result in additional support either legislatively or fiscally for cancer research, treatment, prevention, or care. A cancer survivor herself, Smith is encouraged by the broader message the award carries. “ASCO is saying something about advocates as a partner in the work that they’re trying to achieve. They recognize one human being but they really are also recognizing research advocacy in general and I think that’s great.”

Smith exemplifies the power of insight and foresight in the long-term war on cancer. “I learned the power of what it means for a researcher and a survivor to meet, because they both like change,” Smith said. “The researcher has the opportunity to put a face to the science and what he’s actually doing, and the survivor has the opportunity to meet one of the scientists whose research will actually affect the care he receives in the future. It was very powerful.”

But Smith observed something missing from the status quo ante in the researcher-patient dynamic. “While I have some very fine friends who are researchers, this isn’t their job to educate advocates. They don’t see it as their job. They’re more than willing to be helpful to the process, but they’re not going to be the champions for the research advocates, and they needed one, so that’s why we formed the organization.”

One of the ways RAN equips advocates to effect change in the medical research system is through comprehensive education and training. “I really wanted to provide quality education at the advocate level, not patient education materials,” RAN co-founder Elda Railey said. “The number of seasoned patient advocates that are really trained, that have created that sphere of influence, is diminishing. We need to be able to bring in new advocates and to mentor them.”

RAN is poised to raise up future leaders in patient advocacy. The organization has created numerous free training materials, including tutorial resources and publications, as well as the Advocate Institute, which trains advocates to effectively interact with the research community. “At the Research Advocacy Network, we are helping them be more effective at the table so they will be respected and listened to, because sometimes, as a layperson, you can feel very lost in the research conversation. So if they at least understand the process the research is going to go through and some of the language that we use, they can feel comfortable and be heard.”

Patient advocates provide invaluable services to the research community, according to Smith. “The first one is to say what’s important to them; what are the questions they have that need to be answered. They are the questions from the patient perspective. They may not know how to design the research but they know the questions they struggle with,” Smith said.

“Patient advocates can sometimes ask questions and put them in a way that scientists have wondered about but couldn’t ask without saving face, whereas a scientist, even if they had wondered the same thing, can’t ask it in a review session or multi-disciplinary session where other scientists are involved,” Railey added.

RAN’s voice also speaks clarity into the broader conversation about patient-centered care. “We talk about patient-centeredness, we talk about patient-engagement and I think we’re all defining those terms differently,” Smith said. “Some use these terms as euphemisms for whatever it is they want to do. I think we need to be pretty clear about where research advocacy fits in and how it can be helpful in the process of defining those terms and making them useable as well as workable.”

Railey considers a dynamic partnership as vital to the interests of both researchers and advocates. Through her experience with RAN, Railey knows that successful partnerships begin early in the research development process, and are not just afterthoughts. “An essential element of success is that we’re brought in early and we’re part of the whole design and process and even the conceptualization phase because it’s important not to bring us in at the last minute,” she said. “To be incorporated in a meaningful and effective way, not just be listed on the grant and write a letter of support, but to really be incorporated into the workings of that grant and to be asked to participate more than the night before is very important.”

RAN not only fosters the collaborative relationships between researchers and advocates, but between organizations committed to advocacy. “We develop patient education materials but we also, in a lot of our projects, work through other patient advocate organizations because we are across all cancers and we want to be collaborative with those organizations and not competitive,” she said.

RAN’s relationship with Hoosier Cancer Research Network (HCRN) is an example of this collaborative approach. “We helped start a research advocacy component for HCRN, and that was very fulfilling,” Railey said. “We did a project where we reviewed the protocols before it went to the IRB and tried to create some metrics around that about the differences that it makes in the protocol and it really became a model that we hoped to use with other research networks.”

HCRN Executive Director Cyndi Burkhardt, RN, recalls when she first began collaborating with RAN about 10 years ago, when HCRN was still known as Hoosier Oncology Group, or affectionately “the HOG.” At the time, Burkhardt’s role involved working closely with advocacy groups and individuals.

“As a nurse, I am compelled to ensure that patients’ voices are heard, and I was naturally drawn to RAN and their mission,” she said. “Research Advocacy Network exemplifies leadership and commitment to advocacy for the patient community, scientists, and researchers alike. Never have I met two individuals

like Mary Lou and Elda, who work so tirelessly to bridge the gap between patients, physicians, pharmaceutical companies, and countless other organizations with the single goal of improving the lives of patients burdened with cancer.”

Burkhardt notes that both HCRN and RAN share the view that the heart of advocacy is education, whether it is educating patients about opportunities to participate in research, educating elected officials about the importance of research funding, or educating investigators about patient concerns and perspectives. “To have RAN as a supporting organization for HCRN is truly a blessing and helps ensure that we keep the patient at the forefront of all we do,” she said.