How Patient Advocacy Helps Advance Cancer Research: A Conversation on Collaboration

Deborah Collyar and George Weiner; Voices on Cancer
March 7, 2019
Deborah Collyar and George Weiner, MD

Voices on Cancer is an award-winning Lineagotica Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. Deborah Collyar is the founder and president of Patient Advocates in Research (PAIR), an international communication network of patient advocates representing multiple diseases, including cancer, who work with research communities, advocacy organizations, and patients. Her blog is One Health of a Life. George Weiner, MD, is the Director of the Holden Comprehensive Cancer Center at the University of Iowa. He also serves as C.E. Block Chair of Cancer Research, Professor of Internal Medicine, and a faculty member in the Interdisciplinary Graduate Program in Immunology at the University of Iowa. His blog is Holden the Line on Cancer.

How can patient advocates and medical researchers work together to more successfully advance progress in cancer?share on twitter  Together, Deborah Collyar and Dr. George Weiner discuss the role of patient advocacy, why it’s important to include the patient perspective in research discussions, and ways people can become patient advocates in research settings.

The importance of the patience perspective

Dr. George Weiner (GW): Deb, I appreciate your willingness to serve as a patient advocate for so many worthwhile cancer research efforts. As we’ve discussed, it’s vital that researchers consider the perspective of patients as we design new approaches to cancer research. Indeed, I think of myself as a patient advocate as well. I lost both of my parents to cancer, and my sister is a cancer survivor. I advocate for family, friends, and neighbors with cancer on an almost daily basis. Everything we researchers do is based on our desire to help current and future patients. Or better yet, prevent those we serve from ever becoming patients.

Deborah Collyar (DC): Thanks, George. I also appreciate your efforts, as well as those of countless doctors and nurses who give their patients the best care they can. While I agree that you’re a patient advocate in 1 sense of the word, my experience is that those in medical research still carry the medical mindset as their primary view in discussions about patients. I can’t tell you how many PhDs and MDs have come to me after being diagnosed with cancer and said, “You know, Deb, I didn’t understand what you were talking about before, but now I really get it!” There’s an important role for those of us who focus on the patient experience and the many issues people face as they become “patients.” I often feel like a translator between doctors, researchers, and patients and their families. Bringing patient issues into research discussions to make the research more relevant and understandable has also been useful.

Defining “patient advocate”

GW: Sometimes I’m so involved in the scientific aspects of a research study that it’s hard to think through all of the issues related to how the patient perceives the experience. This brings me to what would seem to be a naive question. What exactly is a “patient advocate?” Do you view your role as being an observer or an outside auditor whose job is to keep us scientific types under control? An advisor? A full member of the research team?

DC: That’s a very important question because there are so many types of patient advocates. Most people and patient organizations start in 1 of 5 areas:

The Worlds of Patient Advocacy. Puzzle pieces labeled political, support, fundraising, and watchdog interlock around a center peice labeled research. © PAIR: Patient Advocates In Research

  • Direct patient support. This is the truest meaning of the word “advocate.” These advocates directly help patients with their decisions, medical visits, support systems, and other resources.

  • Fundraising. This includes efforts to raise money for patient services or for medical research.

  • Political advocacy. The focus is on legislative changes that benefit patients. It often involves lobbying and creating overarching policies at all levels of government.

  • Watchdog. These patient advocates bring system-wide issues to light.

  • Research. The goal is to work with researchers and the research system to make scientific efforts more relevant, timely, and barrier-free for patients. We also get involved in research programs and policies to help move discoveries toward clinical use.

GW: I know patient advocates who fit into each of those areas. I had a memorable experience with an advocate who made a major contribution to research. It occurred when we were discussing options for a new clinical trial. The advocate pointed out an aspect of the proposed research that would affect subjects in a way we hadn’t considered, but that would likely have led to the failure of the clinical trial. It really does help having research patient advocates at the table from the very beginning.

DC: Uh, George, please don’t use “subjects.” While medical research treats it as a noun, patients hear it as a verb. And who wants to be a “thing”? We use “people” or “trial participants” instead. But to your point about the importance of patient advocates, our goal is to learn about the emerging research and how it might impact patients. We also learn what obstacles might thwart efforts to move the research toward better patient outcomes, so that we can help resolve those obstacles along the way.

GW: Thank you so much, Deb. That’s really helpful.

How new advocates can find their place

GW: While patient advocates who speak up may not be fully fluent in cancer research “lingo,” they’re intelligent people with deep life experiences who can follow the discussion and ask questions in plain language that cut to the crux of the matter. Yet some former patients and family members I’ve asked to serve as advocates hesitate to do so because they’re intimidated by the research setting. How can new patient advocates learn from those with more experience around the country?

DC: Another great question, George! The answer depends on the research being discussed and how specific patient advocates approach their various roles. It also depends on the personality, background, and specific life skills of each patient advocate. That’s where a network like PAIR comes in. There are about 250 PAIR patient advocates who are also in other advocacy organizations. We share information about our various research interests, roles, and activities, and discuss ways that we can help accelerate better results for patients.

GW: So, as with other aspects of medicine and science, when it comes to patient advocacy, one size doesn’t fit all. It’s important to find the right patient advocates for the right setting.

DC: Absolutely. In a meeting or project setting, you may only hear from 1 or 2 people when there are multiple patient advocates present. Sometimes, there may be a leader, if they self-organize. Other times, each person may offer a unique perspective separately. It’s very difficult to represent the entire patient community, since many diseases, like cancers, affect an entire spectrum of ages, races, genders, and socioeconomic conditions.

GW: Deb, can you tell me a bit more about your experience helping new patient advocates? What messages do you share with them?

DC: I’ve trained hundreds of people to be research patient advocates through the years. I advise them to:

  • Represent as many people as you can. Being a patient advocate is very different than being a patient. Our focus is not personal. To advocate effectively, we have to remain grounded in patient communities. This means working with newly diagnosed patients, attending support groups, and keeping in touch with how today’s patients experience medical care and treatment.

  • Consider research advocacy a lifelong hobby you want to get good at. This means we need to constantly educate ourselves on emerging research and discuss the good, bad, and ugly sides of each field. Call me jaded, but I’ve done this way too long to take the “latest and greatest” research at face value! People want realistic answers, not hype.

  • Use your life skills in new ways. Many of us have expertise in other fields that can help bring innovative solutions to cancer research problems. This can include areas like communication, process management, training, ethics, or finance.

  • Remember that collaboration and communication are the secret ingredients. They are the glue that make efforts work better, and patient advocates often are the ones who bring the right people together to make things happen!

Resources for research patient advocates

GW: Are there online resources available for patient advocates interested in research?

DC: Like PAIR, there are groups that help train people to become patient advocates in research settings. In cancer, these include:

How patient advocates are seen by researchers

DC: George, I’d like to ask you a question. How are patient advocates viewed by health care providers and researchers? It’s important for patient advocates to know what’s working and what isn’t so we can be more effective. So, give it to me straight!

GW: I think the concept of “patient advocacy” is widely accepted and appreciated by the vast majority of providers and researchers. The problem is that sometimes research investigators don’t know the best way to make use of the expertise provided by patient advocates. That results in investigators not always appreciating the value of patient advocates. Discussing expectations ahead of time can go a long way in that regard, but I don’t think it’s done often enough. As with all good dialogs, the one we’re having right now raises the possibility of valuable next steps for both investigators and patient advocates, which should include having investigators and advocates discuss the best way to set expectations and goals ahead of time.