Building a National Patient Advocacy Network in Oncology

February 2012, Vol 3, No 1

Formed in 2003, the Community Oncology Alliance (COA), led by Executive Director Ted Okon, has been well established nationally as the only nonprofit organization advocating solely for community oncologists and their patients. As a result, COA has a very strong presence on Capitol Hill, representing its physicians and community center practice administrators from all across the country. Yet even in this context of advocating for oncologists and patients, it took a few years before it was realized that the patient’s voice was missing, and that led to the formation of the Community Oncology Alliance Patient Advocacy Network (CPAN).

The Patient’s Voice

Although COA members had presented their concerns to Congress and the media about threats to cancer care in the community, they understood that what resonates best with people is the patient’s experience.

I was hired by COA in 2009 as the Director of Patient Advocacy. Although I joined COA with extensive local and national advocacy experience and a professional background in marketing and public relations, it was my experience as a cancer survivor (treated primarily in a community cancer setting) combined with advocacy program development, which lent an additional level of understanding of how CPAN could appeal to patients and survivors.

With the full support of COA’s board (physicians, nurses, and practice administrators) and the CPAN Medical Chairman, Rick Frame, MD (who initiated the idea of the patient voice and a patient advocacy network), we have successfully reenergized CPAN’s national presence.

Building a Patient Advocacy Network

I am often asked about how to develop a cancer advocacy program. One of the first things I would recommend to any cancer practice or a community group is to start with a market assessment. It is important to assess what is already in the community. Most likely, other patient advocacy programs are already in existence, which is good news for patients, but a challenge when trying to develop a new program.

One of our biggest tasks was to identify how to differentiate CPAN from other advocacy groups. What would distinguish CPAN, a new, small organization compared with well-established groups, such as the American Cancer Society, Susan G. Komen for the Cure, and Lance Armstrong, which are all wonderful organizations in their own right?

The answer was clear. Our strength was our unique membership: patients, survivors, nurses, practice administrators, and oncologists. Few patients will ever see their providers in a role outside the clinic. With CPAN, our advocate volunteers will partner with oncologists in advocating for cancer care.

Engaging the Cancer Community    
One of our goals at CPAN is to alert the cancer community about how policy changes in Washington, DC, can have a negative impact in our local communities. For example, a staggering number of community cancer clinics are closing across the country. This directly affects patients’ access to care.

In my case, for example, although it is 8 years after my primary diagnosis, I am still under the care of an oncologist; if my community practice closed, this would be devastating for me. I share this, because cancer survivors currently remain under an oncologist’s care longer as a result of increased survivorship. The continuum of care is long today, and we want to make sure that community cancer centers are there to treat newly diagnosed patients and long-term survivors.

Because CPAN represents all types of cancer, we can deal with legislative advocacy in broad terms. CPAN membership is open to all members of the cancer community: patients in active treatment, survivors, caregivers, family members, nurses, oncology professionals, and interested members of the general community.

After a primary treatment, many patients want to get involved in cancer advocacy. At CPAN we offer that opportunity. As a survivor, I am greatly concerned that all patients with cancer may lose access to cancer care in their communities. CPAN offers patients the ability to get involved in advocating for cancer care at the local and national level.

Nurses’ Unique Role
Patients often form close bonds with their nurses. This is what happened in my case, and this can happen in any practice. As a result of my extensive treatment period, I gradually developed a close bond with my community cancer center and with my nurse. In addition to the patient’s medical history, nurses often learn about the patient’s personal life, skills, and interests. As a result, nurses are among the best liaisons for alerting administrators or physicians to patients who may be ideal CPAN patient advocates. We are very interested in working with nurses, and I invite all nurses to reach out to me to discuss patient advocacy opportunities with CPAN.

Defining Patient Advocacy

The terms “patient” and “advocate” can have many different meanings. Most practices have staff members who are “patient advocates,” but they are often employed by practices to work on reimbursement or insurance issues, which is a form of advocacy. Other types of advocacy can include peer-to-peer support, and legislative advocacy.

CPAN’s focus is legislative advocacy. The first thing for the practice to understand is what type of advocacy they are seeking. If I ask administrators and oncologists to identify a patient advocate for CPAN, they will immediately think of a patient who is in treatment. This is fine, but a patient could also be someone who is 10 years out of treatment, a family member, or an active member of the community. It is therefore helpful to expand your line of thinking when using the term “patient.”

What CPAN Can Offer Practices and Patients

We are actively recruiting patients nationally, and we would love to have volunteers in every state. Community oncology practices have a great opportunity to contribute to CPAN growth. We have members in more than 15 states. Scott Parker, Executive Director of Northwest Georgia Oncology Centers, was one of the first practice administrators to step up and say, “I can help you develop this program.” Mr Parker introduced me to several potential volunteers. One of them, Susanne Johnson-Berns, now serves as our Georgia State Chapter President.

When an administrator such as Mr Parker is talking to other administrators, they are excited to get involved in CPAN. When an oncologist such as Dr Frame is serving as CPAN Medical Chairman, it inspires other oncologists to get involved in advocacy. And, of course, our advocate survivors inspire each other.

We introduce advocates gradually to policy issues, by bringing them to Capitol Hill and helping them understand that what happens in Congress is ultimately going to affect them in their local community. We ask our volunteers to alert the members in their communities about how national issues affect them locally. In turn, we invite them to stand side by side with an oncologist, a nurse, and a cancer practice administrator and share their concerns with their legislators.

With CPAN we give volunteers the opportunity to become cancer care advocates by assisting year round with our outreach and by joining us during our annual trips to Washington, DC, and special member events.

Join Our Annual Conference

On March 30-31, 2012, during COA’s 7th annual conference, we are offering a patient advocacy program, with several educational advocacy sessions planned. Nurses, practice administrations, volunteer advocates, and representatives from national organizations are featured speakers. Our distinguished guest is the Honorable Mark Shurtleff, Utah Attorney General, a colon cancer survivor.

I invite any advocates who may be interested in learning more about CPAN and/or attending our conference to visit www.coaAdvocacy.org or contact me by e-mail at This email address is being protected from spambots. You need JavaScript enabled to view it..

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