Ahead of the 2017 American Society of Clinical Oncology (ASCO) Annual Meeting, Martha Orzechowski, Global Director, Oncology Patient Group Relations, met with Elisabeth Baugh, Chair of the World Ovarian Cancer Coalition and Chief Executive Officer of Ovarian Cancer Canada to discuss her work as a patient advocacy group leader at medical congresses. Below are excerpts of their conversation, which also discusses the award-winning Ladyballs campaign, an Ovarian Cancer Canada campaign that draws attention to the condition by asking "Do you have the ladyballs to do something about ovarian cancer?” This interview has been edited for length and clarity.
MARTHA ORZECHOWSKI: Elisabeth, thank you for taking the time to speak with me. We’re interested in better understanding how global patient advocacy groups, like World Ovarian Cancer Coalition, engage at medical congresses. Do you typically identify priorities for your time at the ASCO meeting?
ELISABETH BAUGH: I’ve only been to the ASCO meeting once, but many people have told me that it is an incredible opportunity to be with so many scientific and clinical leaders. So whether you want to talk to a researcher about a patient issue that you feel needs attention or another patient advocacy colleague or meeting the many people who support us from the pharmaceutical industry, it is a real networking opportunity. Scientific announcements are always going to be online, but I could never match that personal interaction of having the opportunity to speak to someone, get an answer to something that’s been a burning platform for us, or build a stronger relationship with our partners like AstraZeneca.
MARTHA ORZECHOWSKI: Is there a uniqueness about the ASCO meeting or do you approach all medical congresses in the same way?
ELISABETH BAUGH: I do try to scour the agenda and I do try to reach out to my network of people to find opportunities for us to get together. I’m hoping there will be some wonderful surprises at the ASCO meeting. Last year for example, I was able to meet with a colleague I’d never met in person before and together we found a solution to improve outcomes on a project collaboration.
MARTHA ORZECHOWSKI: Is there anything specific you are looking forward to at the ASCO meeting this year?
ELISABETH BAUGH: I’m looking forward to some of the sessions such as one on state-of-the-art treatment in high grade serous ovarian cancer. I’m also very interested in the AstraZeneca patient advocacy group meetings, which I think will be great because we all have a unique disease we’re focused on but there are so many similarities across the cancer network that can create synergy. And so I’m very excited about those.
MARTHA ORZECHOWSKI: On Sunday, we will convene the Women’s Cancer Patient Advocacy Engagement Series for the second time this year. Do you think the fact that AstraZeneca is bringing partner groups together to further discuss the latest in ovarian cancer science is valuable?
ELISABETH BAUGH: Yes, absolutely. That is hugely valuable. I really appreciate those focused meetings because we know how big the ASCO meeting is and it really helps to put those people in a room, look at the emerging science and the patient issues, and build relationships for the future. I’m very grateful to AstraZeneca for doing this.
The Ladyballs campaign
MARTHA ORZECHOWSKI: That’s great to hear. I’d also like to talk a little bit about Ovarian Cancer Canada’s Lady Balls campaign.
ELISABETH BAUGH: We started the Ladyballs campaign because we felt people didn’t know about ovarian cancer and we wanted to get it on the radar. We wanted something that was in peoples’ faces and edgy. I thought of some of the work that had been done on colorectal cancer, talking about bums and butts. And I said, I think we need to be in peoples’ faces.
Some people got hung up on the literality of “Do you have the lady balls to take action?” We found it was controversial, we knew it would be. But it was figurative, and it was about strength and power. We wanted to move away from campaign concepts that were very, very powerful but were also almost immobilizingly sad. The wife of one of our board members has ovarian cancer. When discussing the proposal via skype he was skeptical and his wife walked behind him and gave him the double thumbs up, and he said, “Oh wait a minute, I have to change my vote. Apparently, this is a go.”
We had over 60 million earned media impressions in three months, a value of about $12 million dollars. We didn’t put a cent towards it. And that’s a one-time thing. It was just incredible. People asking for help increased over 100 percent.
MARTHA ORZECHOWSKI: So you realized you needed to identify a disruptive campaign to really pivot from awareness to action, and ‘Ladyballs’ was just what was needed to increase the dialogue?
ELISABETH BAUGH: Yes. When we won the Gold Award in Canada for the CASSIES, one of the judges talked about the boldness of it. It was just the bold step that the disease needed to get the attention it deserved. People are now using it in their language, even at medical meetings.
MARTHA ORZECHOWSKI: It has empowered patients and families. That pivot from hope to action. It’s powerful.
ELISABETH BAUGH: In retrospect, it was probably a missed opportunity that we didn’t link it with a fundraising campaign. Everybody wanted to be the next ice bucket, right? Having said that, it has changed our voice forever. Women are saying to us “Enough with the hope already. I want action.” So we are developing Ladyballs 2.0, asking the Canadian federal government for more research money and demanding treatment access across the country.
Supporting Patient Groups
MARTHA ORZECHOWSKI: Thinking disruptively, in the same way you thought about Ladyballs, what can industry do better to support the work that patient groups are doing?
ELISABETH BAUGH: There are a few areas that patient groups struggle with, and it’s not just funding. Primarily, what are the things we can do together over multiple years? I know that most companies are bound by an annual cycle, but it’s really hard for charities to start a program and be sure it is sustainable.
I also wonder what other expertise you have that you could lend us? For example, offering translation services or communications support. Thinking beyond the funding to the bigger partnership, the opportunity to bring together patient groups is also a huge value add.
A strong example that comes to mind is the development of the BRCA section of an Italian patient group’s website. It was done with AstraZeneca support and I was so impressed with the breadth of the information - it is so well thought out, covering every moment of the patient journey, even answering questions such as “what will happen to my fertility if I have surgery?
MARTHA ORZECHOWSKI: Would you say that’s an example of us translating the science into practical implications for patients?
ELISABETH BAUGH: Yes. Very practical.
MARTHA ORZECHOWSKI: Thank you very much for your time, Elisabeth, and all the best for a successful 2017 ASCO annual meeting.