A Voice for Action and Change: The Patient Advocate’s Crucial Role in Cancer Research

The early roots of cancer patient advocacy could be traced back to Mary W. Lasker, a New York philanthropist and social citizen, who worked relentlessly behind the scenes of the 1971 National Cancer Act to increase awareness about the disease and lobby for more research and treatment funding to find a cure. She is credited with helping develop the monumental bill that  established the National Cancer Institute designation, giving cancer centers like Columbia Cancer access to funding still critical in advancing research and treatments today.

In 1972, Lasker participated in the first-ever meeting of the National Cancer Advisory Board, which was formed to advise and assist the NCI director on national cancer programs, solidifying the critical role advocates play in cancer research.

Carrying on that legacy, Desirée A.H. Walker and Anne Marie Mercurio, members of the Columbia Cancer Patient Advocacy Board, share insights about their experience in the field of advocacy and discuss the trajectory of the role of the patient advocate, here to stay.

Tell us how you got into patient advocacy work.

Desirée: For me, it started with the whole idea of advocacy, not necessarily patient advocacy. It’s all about saying there is something wrong with this, whatever that is, and then saying, you know what? I want to be a part of change. My advocacy started with self; really feeling like I have a right to have a voice about my care and experience.

Anne Marie: Someone once referred to me as an accidental advocate. They asked me how I got my start and I said that doors just started opening for me as I shared my experience with cancer, and I just kept walking through those doors. I was doing a number of things to get involved; volunteering at a hospital, doing rounds with patients and being someone they can speak to about what they’re going through, being a person they can see and someone to tell them there is a light at the end of the tunnel.

But that takes an emotional toll on you. I started getting more involved on the research side [of cancer as a patient advocate] and I felt like that's where I was getting the most fulfillment, so I sort of refined my path that way.

I’d like to get into the topic of research, but first, can you talk about the impact advocacy has made on patients?

Desirée:  Initially, I did self-advocacy. Then I realized that people in my community didn't really understand breast cancer. People didn't understand that young women could get breast cancer, and I felt like it was important for me to do outreach. Outreach in my community [Black community] became the thing I focused on, and spreading awareness that this is not something to be ashamed to talk about. I share my story of being diagnosed with breast cancer, what you need to know about the disease and about breast health. People I’ve come across, at meetings or speaking engagements, have contacted me subsequently and said I was the reason why they scheduled a mammogram or learned how to do a breast self-exam. That, to me, is a very powerful impact.

Anne Marie: Listening to Desirée talk about how advocacy starts with self, that’s very true. It does start with self. For me, that started with my own ambiguous diagnosis. I remember spending three months going down so many rabbit holes, anticipating every conceivable diagnosis because I was the same age as my mom when she was diagnosed with breast cancer. I remember going to the library at that time to research her diagnosis and finding very few medical resource books that could help me. Later when I was diagnosed in 2006, I was online quite a bit but there weren’t a lot of trusted resources, so I had to be cautious about the sites I visited. And, that experience really stayed with me—not having the resources or knowing what to do as a patient newly diagnosed. It became really evident that patients need the support and guidance when talking to their oncologists who often ask, “Do you have any questions for me?” It can be difficult to come up with good questions after being hit over the head with the words: You have cancer.

That’s a big part of how patient advocacy has made a huge impact and what I worked on early on. I always tried to help patients ask the right questions, and if you don’t understand the answers to your questions, ask for clarification. Don't be afraid to ask. Essentially most of advocacy has been about encouraging people to self-advocate in front of their own doctors

What other areas have been a huge emphasis for patient advocates?

Desirée: It wasn’t until I attended my first New York State Breast Cancer Network’s Lobby Day with SHARE in Albany that I really learned about what it is to be a patient advocate. Getting involved in legislative advocacy and trying to convince lawmakers to fund cancer research was an eye-opening experience.

The truth of the matter is research is what moves the needle. That's what helps us with our drug development, and if we're not part of the studies then we're going to continue dying at alarming rates from certain cancers. The reality is that researchers are not enrolling enough diverse participants in their trials, and sadly, do not know the effectiveness or efficacy of the drugs on these underrepresented groups.  It's clear that the Black community also has a high cancer burden. So I've spent a lot of time really focusing more on the research piece of the education. I felt like I really needed to shift. I’ve witnessed other peers also shift their attention to research because there is a huge need to have different communities understand why they need to be involved in clinical trials and research. It doesn't all have to be related to a drug intervention either. There are so many types of research that we need to be a part of, so that the knowledge is available. There is a huge opportunity, at the end of the day, to have treatments tailored for everyone.

Anne Marie: The lived experience of patients and caregivers can truly help the scientific community maintain rigor within their clinical trials and also then address, on a population level, how can we help the most people by introducing therapeutics. To Desirée’s point, if researchers and doctors are not testing drugs in the population that mirrors the condition or disease or cancer type that they are addressing, then what did they accomplish? We’re both very passionate about making sure that there's representation across the board, that people are understanding why it's important to participate in research and that cancer centers are embracing people in the community and making sure that their voices are being heard.

What does the future hold for patient advocacy?

Anne Marie: I hope that we can start using the word patient “partners” instead of patient “advocates” when we're talking about engaging a person with lived experience of a particular disease, in this case, a particular type of cancer, to a table where decisions are being made. Whether we’re discussing clinical trials or a new technology or other experience, a patient partner should be seated right there. I see us as partners going forward and matching the stature of everyone else around the room. Of all the stakeholders at the table, the patients are the ones who have the most to lose.

Desirée: I’d like to see a time and a place where there is an investment made in those individuals who are patient advocates, because I think that the way to be a patient partner, you need to be informed, you need to have the facts, you need to have the training and education to speak with the people in order to advocate for them. That goes beyond just going out there and sharing your own experience as a patient or caregiver. It really involves an investment in training and education.

The field of patient advocacy has really been elevated in recent years because government agencies and nonprofits, like the DoD [Department of Defense] and PCORI [Patient-Centered Outcomes Research Institute] for example, are making it a requirement that review teams must have patient advocates included. And it isn’t just a check-the-box requirement; patient advocates are being asked to review research proposals and invited to sit on review panels. And, we don’t need to know every scientific aspect but our role is to be a strong patient voice. At the end of the day it is important to understand how patients are going to be affected by the research or the new technology or the new innovation being proposed. Including the patient voice has really set the tone for where patient advocacy is going in the future.