Advocacy Action is an annual publication put out by the POCRC advocacy group to share what advocates are doing around their communities. It also provides information on upcoming meetings and opportunities to learn with and about the advocates or help spread awareness to the public.

The POCRC Advocacy Group by Shannon Marsh
3rd SPORE Investigator’s Workshop by Susan Dearborn
A Rookie’s Perspective by Joyce McCallum

In the spring of 2004, I joined Nicole Urban’s research team at Fred Hutchinson Cancer Research Center and stopped practicing law.  Today I am a patient advocate.  This decision was not unexpected considering I am an ovarian cancer survivor, caregiver to a family member with metastatic esophageal cancer, and, at 39, the oldest living woman on my father’s side of the family.  The women in that line have all died of breast or ovarian cancer by the age of 45.  In my short time here, I have learned that the POCRC advocacy program is exceptional in the way that researchers value and integrate the patient’s voice in most aspects of their research studies.   

As an advocate, education is our priority.  We must not only learn the science of cancer, but we must learn what we can do to help researchers accelerate their progress against cancer.  With this goal in mind, some of us have attended national conferences where advocates and researchers come together to exchange information. 

In June, the American Association for Cancer Research sponsored an extraordinary conference entitled the Scientist/Survivor Educational Workshop where 50 advocates and 30 researchers from around the world gathered for four days of intensive information gathering.  Topics included: Introduction to Cancer Biology and Cancer Research, Cancer Drug Discovery and Development, Translational Research, and Challenges and Controversies in Clinical Research.  Each presentation was followed by a Question and Answer session where patient advocates and researchers asked each other tough questions.  At breakfast, lunch, and dinner the dialogue continued and we asked each other, “What can we do as a team to advance our progress against cancer?”  Advocates gained an understanding of fundamental topics in cancer research and were exposed to “cutting-edge science”.  Researchers learned how advocacy could be further integrated into their programs to hasten their results from bench to bedside.  This synergistic collaboration among scientists and advocates will result in improved study protocols, clinical trial design, and communication about research studies to the general public.

On a local level, the group is able to keep up to date on current POCRC projects by attending bi-monthly scientific discussion groups.  Over the summer, Kelly Thromodson, the Center’s librarian, presented on how to perform scientific research relating to ovarian cancer and Dr. Naomi Hunder spoke about immunotherapy and advanced ovarian cancer.  Annually, the group hosts a Winter Welcome where POCRC investigators provide an overview on current POCRC research projects and progress being made. We anticipate hosting the 5^th annual Winter Welcome February 2006. Maintaining an educated advocacy pool is crucial so that when called upon to review protocols, new project proposals, or perform community outreach, advocates are knowledgeable and effective. 

Advocates utilized their skills at the 11^th Annual Swedish SummeRun, held July 31, 2005 where they distributed study materials, explained the various POCRC research projects to the community, and even formed teams to raise funds for the Marsha Rivkin Center for Ovarian Cancer Research.  Allie Eisenbarth, daughter of Sheryl Eisenbarth who was formerly the POCRC Advocate Coordinator, led “Team Advocate” and helped contribute to the $295,000 that was raised for ovarian cancer research.  Sheryl recently passed away from Ovarian Cancer.  A tribute was made to ovarian cancer survivors including POCRC advocate Gail Stulberg, who was honored for her activity in the community and for her bravery and courage. 

Finally, advocates have been integral in creating recruitment materials such as brochures, consent forms, letters of approach, questionnaires, newsletters, and web pages.  This ensures that study materials are sensitive to the patient’s needs and are easily understood.  Protocol design is another area where advocates have played a key role.  After consulting on study protocols, I have been asked to attend IRB meetings in order to explain protocol from the patient’s perspective.       

This unique partnership has resulted in a “culture of collaboration” that will undoubtedly move new discoveries to the clinic faster.  The simple presence of advocates at scientific meetings helps to remind researchers of the urgency and importance of their jobs.  It is only by working together that we will stop the pain and suffering caused by this disease, which is what I dream about for my four-year-old daughter and six-year-old son.

In July 2005, Shannon Marsh, Joyce McCallum, and I had the opportunity to represent the POCRC as Patient Advocates at the 13^th annual SPORE Investigator’s Workshop in Washington, D.C. The workshop was filled with study presentations on a broad range of topics, including: the identification of biomarkers for the early detection of ovarian cancer, novel treatments for ovarian cancer that cross different cancer types, and the use of “natural“ products for the prevention and treatment of ovarian cancer.  NCI leadership and private industry also presented on programmatic changes, funding, and novel drug development.  Dr. Andrew von Eschenbach, NCI Director, indicated that the direction and future of the SPORE program is changing so that diseases which competed within their own categories for funding will now compete against other cancers.  Molecular targeted therapies were also highlighted along with the complex intellectual property issues that arise when different institutions collaborate, pool and share data.   

The SPORE program provides a practical and inspirational resource for new options to be shared and developed. The roles of patient advocates are many and include being actively engaged in efforts to keep this program or one with similar objectives going.  Dr. Nicole Urban, POCRC Principal Investigator, expressed confidence and hope that advances will continue during an uplifting speech that she delivered after receiving an Outstanding Leadership Award from the NCI-SPORE program in recognition of exemplary leadership in fostering interactions among SPORE investigators for the advancement of translational research. Throughout the workshop, patient advocate participation was respectfully included and cancer research isolated from patient care was not in evidence. The name of the program and what we are all “called” may change someday, but I’m confident that patient advocates will continue to play an important and critical role in advancing research. (For more specifics, contact: swdearborn@pobox.com)

Each year the Pacific Ovarian Cancer Research Consortium announces the availability of about $150,000 to fund translational ovarian cancer developmental research studies. The funding process begins with the release of a Request for Applications (RFA). Once the RFA is distributed then the grant application process moves toward submission of applications by interested investigators, scientific review of the applications, and finally funding of the top 2-3.  Over the last four years, patient advocates have been invited to participate in this important process by serving as consumer reviewers on the Application Review Committee. This year, Joyce McCallum, a new member of the POCRC Patient Advocacy group was asked to coordinate consumer reviewer participation.  Below is Joyce’s personal account of organizing and participating in this highly valuable patient advocacy activity.

Suddenly, I found myself organizing a project that I had absolutely no experience with.  It was fortunate that I had six willing and very capable partners, because success was our only option!  Thank you from the bottom of my heart!  Cynthia Becker, Susan Dearborn, Shirley Inveen, Judy Johnson, Shannon Marsh, Cindy Schroeder, and myself were the consumer reviewers invited to assess the POCRC Developmental Research Programs annual applications.  Together, we were a strong team, each bringing our own strengths, expertise, and opinions for a common goal.  Since we all have some personal reason for our involvement in the POCRC Advocacy Program, it was critical to us how the applicants were chosen to receive funding for their projects.

Many thanks go to Lisa Isozaki, for her suggestions of how to effectively evaluate this material.  We consumer advocates, used the same criteria that the Principal Investigators were to be evaluated on from their peers.  Several basic components and a scoring system that reflected an overall value…how hard could this be?  We were confident that our personal experiences were unique and that we brought valuable insight to the group of scientific reviewers.  Realistically, were we going to actually understand all the details of each proposal?  What we could do, was ask the ‘simple’ questions, which from our perspective, was paramount.  Did these studies offer any positive feedback to patients in the near future?  How would it affect their lives specifically?  Keeping in mind that these are one year studies, could they lead to more involved research?  Very simply, which of these applications offered the best translational potential for the patient?  We tried to evaluate the ‘idea’ in the proposal, not the details of the science. 

I was extremely fortunate to be able to read and study these proposals several weeks before anyone else.   It was very compelling reading…really.  Some of these proposals at first appeared to be written in another language, but after repeated readings, made a lot more sense to me.  My medical dictionary has become my close friend and my inquisitive nature leads me to look for answers and solutions in simple places.  We asked all the consumer reviewers to look over all the proposals, but they were assigned specific ones to evaluate as a primary or secondary reviewer.  This would facilitate a broad overview of each study.  We arranged an afternoon to get together where we could talk things over.  I expected lively discussion, and was not disappointed.  Each one of us had something to say about almost everything, even the reviewers that could not actually attend the meeting.  I give credit to those gals who faxed in their reviews from their family vacation or joined us by conference call.  I give much credit to those gals who took time out of their busy days, in some cases taking time off from work, driving quite a ways, much of it in rush hour traffic to attend this meeting.  Interestingly enough, we still all don’t know each other and have not all formally met.  This did not matter, for we had a common goal and we were all determined to see that the most deserving investigators and projects would get the awards.

On the day of the gathering of scientific and consumer reviewers, I will admit to being a little nervous.  Were we prepared adequately?  Were we going to be allowed to speak up and voice our opinions?  Was everyone who said they were coming, going to actually show up?  Were the medical professionals going to actually listen to what we had to say?  Well, the experience turned out much better than I could have possibly hoped.  We were welcomed into the room (Thank you Nicole Urban!) and received the summaries and scores given by the scientific reviewers.  As we read them and noted scores, we also couldn’t help but notice ‘we’ all had many similar comments of what we had read.  Each DRP proposal was discussed by the scientific reviewers and the discussion here was just as lively as ours was the day before.  The consumer reviewers were asked for comments, and we four present, spoke freely.  We knew that the more brief and direct we were, the more seriously we would be heard.  We had planned to have one spokesperson for each proposal who would speak for us as a group.  Did we make a difference?  I would like to think positively, yes, we did make a difference.

In retrospect, I think it was worth our time and energy to participate in the DRP proposal review.   I greatly appreciate the opportunity to speak for the patient/consumer/layperson, someone who can sometimes be overlooked.  I felt we were recognized as a valuable asset to the review process by the scientists and medical professionals.  There are some aspects that I would handle differently and hope that the opportunity will present itself.  Our group’s teamwork approach is similar to the collaborative efforts that the investigators use.  We are stronger working together, with more powerful results for everyone.  I can’t resist urging any potential investigators who apply for future funding, to please take note of the required parameters.  You are trying to persuade quite a few people to award you with money that is getting harder and harder to come by.  You should attempt to be as clear and organized as possible, for then it will be apparent that your research procedures are just as organized.  I would also like to encourage any potential consumer/advocate/patient reviewers to consider participating on a review panel, you bring a unique perspective with great value.  Thank you for the opportunity to be a part of the process.

Fall 2005 newsletter
Winter 2003 newsletter
Winter 2002 newsletter