Rose Gerber: Introducing the Community Oncology Alliance (COA) Patient Advocacy Network
The Group Room sits down with Rose Gerber, Director of Patient Advocacy for the Community Oncology Alliance (COA) Patient Advocacy Network (CPAN), at the 2012 COA Annual Meeting. Rose talks about the mission of CPAN, how much it has evolved and what her vision is for the future of patient advocacy in the community oncology setting.
The Group Room interviews at the Community Oncology Alliance (COA) 2012 annual meeting in Las Vegas was made possible by the generous support of our members.
VIDEO TRANSCRIPT
Selma Schimmel, Founder & CEO, Vital Options International
This is Selma Schimmel in Las Vegas at the Community Oncology Alliance meeting. And joining me now is Rose Gerber. Rose is the Director of Patient Advocacy for the Community Oncology Alliance. But what also sets you apart, Rose, is that you are a survivor.
Rose Gerber, Director, Patient Advocacy, COA Patient Advocacy Network (CPAN)
That’s right, 9 years; happy to be a 9-year breast cancer survivor.
Selma Schimmel, Founder & CEO, Vital Options International
It has given you tremendous sensitivity and understanding of the importance of the work COA does.
Rose Gerber, Director, Patient Advocacy, COA Patient Advocacy Network (CPAN)
Oh, absolutely. That’s how I identify with the patients – I’m them, they’re me; we understand each other.
Selma Schimmel, Founder & CEO, Vital Options International
Very important. So, I share survivorship with you and I salute you on 9 years.
Rose Gerber, Director, Patient Advocacy, COA Patient Advocacy Network (CPAN)
Oh, thank you.
Selma Schimmel, Founder & CEO, Vital Options International
I’ve been most intrigued in speaking to your colleagues and the physicians involved in COA about the emergence of real patient advocacy within the community oncology setting. Let’s talk about how you perceive, in your role as the Director of Patient Advocacy for COA, where you’re at in your work right now, what you hope to achieve and what you want patients to know.
Rose Gerber, Director, Patient Advocacy, COA Patient Advocacy Network (CPAN)
Well, it’s very exciting. So, we’re very young- In fact, yesterday when we opened up the conference I let everyone know that, to put everything in a time line, COA as an organization is actually very young. If you think about some of the more well known organizations, COA was founded in 2003. The patient advocacy component as conceptualized in 2009, but it really didn’t become a full working program until 2010. And that was when we took the idea that the board had, which was a great idea, of having the patient advocacy component and actually laying out a working plan to develop it into a full program, moving beyond the great idea. And what we did, again with the support of the board and the doctors and all our practice administrators, is we said, ‘let’s add the patient voice.’ Because COA already had a lot of strength with the physicians and nurses advocating, but we needed to get the patients, the people like myself, people who have had the disease.
But here’s what is very distinctive about COA, when we bring in the advocates we’re not only asking them only to talk about their individual disease, so we’re saying your story about being a breast cancer survivor, or prostate or lymphoma, that’s critical, that’s part of the story, but we are trying to educate the advocates beyond their own disease state. So, teaching them about the broader national oncology landscape and how does their story tie into that.
So, now we’re basically, I consider us, in year-2. So, we laid down a foundation in 2010, last year was our very first patient advocacy conference. And again, to put it in perspective, COA had been doing an annual conference for 6 years, so we’re going back one year ago. So, we introduced our inaugural Patient Advocacy Program- so we laid out the agenda, got speakers and we brought in the advocates and had no idea how it was going to be received. The advocates loved it, it was well received by our pharma-partners, by other non-profits, and it’s just generated more and more excitement.
So, we’re definitely ready to take it to the next level and we see ourselves going nowhere but bigger and bigger and bigger. And it’s exciting and the advocates will help us grow.
Selma Schimmel, Founder & CEO, Vital Options International
When you say you brought in the advocates, are these the advocates that have been working with you in your leadership or are these the advocates from the existing, let’s say advocacy organizations throughout the country?
Rose Gerber, Director, Patient Advocacy, COA Patient Advocacy Network (CPAN)
Oh, that is such a good question. It’s a combination. Some of the advocates that are present are actually, were brought in by some of their physicians. So we went out and said, ‘do you, can you identify some patients for us that you feel would be a strong advocate?’ And I always clarify, a patient could be someone who is actually in treatment or it could be someone who is a 10-year survivor. I’m a 9-year survivor and much to people’s surprise, I’m still under the care of an oncologist; but you wouldn’t necessarily think of me as a patient. So I always ask people to think of that whole continuum of care.
We have individuals that have had a lot of advocacy experience, maybe they’ve been active with other national organizations and doing a lot of work. But what is exciting for me is, we have advocates that are here for the very first time. And this morning I actually led a session called ‘Introduction to Patient Advocacy’ where I talk about the very basics- what is advocacy? And most of the time, the patients, they only know about peer-to-peer advocacy, where you have like a patient support program. So we introduced them to all the different types. And that is exciting for me because it’s that balance of your very skilled advocates with the people who have never done advocacy before, and see that light bulb go off and go, ‘oh I’m excited about learning.’ And that’s where I get a lot of my energy from too, is seeing how you have these different groups of people with different skill levels excited about learning about advocacy.
Selma Schimmel, Founder & CEO, Vital Options International
Well, it’s almost fascinating to see people like us because we do something in common with our advocacy work that one begins by being their own advocate. You have to self-advocate.
Rose Gerber, Director, Patient Advocacy, COA Patient Advocacy Network (CPAN)
Right.
Selma Schimmel, Founder & CEO, Vital Options International
You’re diagnosed and it begins by you understanding your disease, having access to your pathology report, your surgical report, your medical records, your images… you know, all of that at your fingertips. So you begin to become much more in control advocating for your own awareness so you can make the best-informed choices. Or you may be advocating for your loved one with cancer. And then as you heal you’re able to maybe reach out and advocate for someone else or you start advocating on a local level. And then as your passion is fueled, which it always is once you start advocacy, then you may begin to reach out on a national level. But it always has to come back initially to the core of that human being.
Rose Gerber, Director, Patient Advocacy, COA Patient Advocacy Network (CPAN)
Right. Absolutely. Because that’s what starts it. And I’m so glad you said that because, again, that is something that I talked to the advocates about this morning is, ‘retain your story; your story is what brought you here. But now think of it larger- if one prostate cancer survivor’s story is important, how about 30 prostate survivors? surrounded by lymphoma survivors? And it’s really exciting.’ And you mentioned something that’s really critical and very important to me to talk about, is how you start locally and then you go on nationally. One of our speakers this morning was actually my former chemo nurse. We had a session that was titled ‘How Patients And Nurses Can Advocate And Collaborate For Patient Care.’ And she actually told the story of how we met locally and we started doing local advocacy stuff, because I had started a breast cancer mentoring program. And then, now, you know I asked her… I was her patient at one time and she lifted me up. And now that I am working on a national level I wanted to go back locally and bring in this local nurse and put her on a national platform so everybody can learn about what an oncology nurse does. And it was a, she was incredible.
Selma Schimmel, Founder & CEO, Vital Options International
Rose, how does COA work with the existing advocate community that’s out there? Some of them are disease specific, but let’s say the national, the known national organizations.
Rose Gerber, Director, Patient Advocacy, COA Patient Advocacy Network (CPAN)
Well actually, when I was hired by COA, that was one of the things that I talked to our Executive Director about and talked about collaboration, because I’m very interested in collaborating with our other organizations. So, I do not consider us competitive with other organizations. And again, this is something I spoke about with our advocates this morning- I’m looking to partner, we are looking to partner – when I say ‘I’ I am talking first-person as someone who is obviously representing COA and CPAN – I’m looking for collaboration and we do a lot of collaboration with some of the organizations that are out there. And again, being in the leadership role, I certainly get a lot of incoming requests for partnerships. And of course, we want to affiliate with organizations that are highly respected, highly reputable, so we were thrilled when we got your invitation.
Selma Schimmel, Founder & CEO, Vital Options International
I do have a question though, about value-based cancer care in a community setting. What does that mean exactly?
Rose Gerber, Director, Patient Advocacy, COA Patient Advocacy Network (CPAN)
I’m going to be perfectly honest, for the patient, I don’t think that is something the patients are thinking about. That’s something the oncologists are thinking about and the nurses and the doctors who are very conscious of it. The patient going in there, they’re not thinking, ‘is this a good setting for cost savings?’ They’re going to go in and they’re going to think, ‘does my receptionist say hello to me? Is my oncologist going to see me on time? Is my nurse kind to me? The value is the care, the care that you’re going to get in that community setting.
Selma Schimmel, Founder & CEO, Vital Options International
What pearls of wisdom do you want to leave our viewers with?
Rose Gerber, Director, Patient Advocacy, COA Patient Advocacy Network (CPAN)
That everybody has a story and everybody can be an advocate. I have actually had people say to me, ‘well Rose, you seem like a natural.’ And I say, ‘no, everybody’s story is different, you know. I have a different kind of way of getting engaged in advocacy but maybe you’re a behind the scenes person who can do a letter writing campaign. Maybe you can lend an ear to someone. Even if you come to our conference and you’re a person in the audience and you choose to be passive…’ Well, maybe passive is not the best word. Maybe you just want to be a listener; that’s a form of advocacy because you’re showing interest.
There are many different ways to become an advocate. People think being an advocate means having the microphone, or being videotaped, or having to get it out on YouTube or Facebook- absolutely; we do want that, we do live in the world where social media is big. I asked all our advocates this morning, ‘please talk about this on Facebook, say that you’re here’ because that’s how we promote our cause, but you can be an advocate in your own silent, quiet way. So, everybody who wants to… and I’m always very careful to also say, ‘and you know what if you don’t want to be an advocate, that’s okay.’
Some people want to and that’s fantastic. There are a lot of us, but some people say, you know, I processed my experience and maybe I’ll be ready and maybe some day they will; and maybe some day they won’t, and that’s okay. I just think that’s okay, whatever works for you. You have already gone through the disease, and you know, you go through the shock and the dismay and the fear and the years after where you’re petrified that you’re going to have a relapse, and then you just get to a place where that’s where you are at, and that is okay.
Selma Schimmel, Founder & CEO, Vital Options International
I think this is going to offer an added dimension and depth and communication between doctors and patients as COA deepens its’ role with patient advocacy.
Rose Gerber, Director, Patient Advocacy, COA Patient Advocacy Network (CPAN)
Yes, it’s exciting. It’s definitely exciting. I’ve been with COA now for 2 years and actually I reflect back and we’ve had a lot of successes, but you always have to be very honest with yourself and think, ‘What could we do better?’ And that’s definitely where we are, is ‘How can we now take what we have – this, we built the foundation, we really started from nothing in 2010, again, beyond an idea and we built a website, we created marketing brochures, we started developing presence in all the various cancer clinics, we’re recruiting volunteers and we’re really proud of that. But now we need to still go forward and we’re going to need all the volunteers to help us along the way. So I’m excited about meeting a lot of them here, and they have so much strength and power and great stories. They are open to direction and guidance, and that is important.
Selma Schimmel, Founder & CEO, Vital Options International
Well, hopefully this content on your website will help tweak the interest of patients who are not yet acting as advocates.
Thank you, Rose Gerber- Community Oncology Alliance Director of Patient Advocacy. I’m glad you spent some time with us.
Rose Gerber, Director, Patient Advocacy, COA Patient Advocacy Network (CPAN)
Thank you. Thanks so much. Thank you.
END OF VIDEO