Mendocino is one of America’s most beautiful counties. Regal redwood forests dot the majestic Pacific Coast mountain range and breathtaking beaches line the shore of an area also known for the nation’s greenest vineyards. It’s not surprising that people seldom associate poverty with this corner of northern California. Yet, says Robert Wood Johnson Foundation (RWJF) Community Health Leader (2007) Sara O’Donnell, “we have great disparities here, particularly when it comes to health care. We have a higher level of poverty than the California average and those problems are made worse by the fact that we have a population of roughly 90,000 people spread out over 3,500 square miles. Approximately 68 percent of our residents live outside of the county’s four incorporated towns.”
In this vast, open space, cancer patients also face significant barriers to accessing care. “There are only two medical oncologists—one on the west side of the county and one on the east, and one radiation oncology practice,” O’Donnell explains. “Just figuring out how to get to treatment can be too much for many people, especially with gas prices as high as they are today.”
RWJF Community Health All-Stars
Robert Wood Johnson Foundation scholars, fellows and grantees, along with the Community Health Leader award winners, address the health needs of the nation in unique and innovative ways. Whether they are creating healthier environments, bringing needed health resources to underserved communities, diversifying the local health care workforce or generating grassroots programs—they make a difference. This series tells their stories.
To help cancer patients plot a course of treatment in this environment, O’Donnell founded the Cancer Resource Centers of Mendocino County (CRCMC) with a group of volunteers, around a kitchen table in 1995. “In addition to my own diagnosis of cancer, I’ve lost all but one member of my family to cancer,” O’Donnell says. “Because of this, my passion for my work comes from the fact that I saw the need for CRCMC’s services in a community so geographically isolated.”
Offering Grassroots Support
“CRCMC is a patient-centered organization that offers support groups, advocacy services and a patient navigation program that teaches people about their disease, potential treatments, how to talk to their physicians and how to make decisions about care,” O’Donnell explains. When a patient comes to CRCMC, they sit down with a navigator who guides them through a list of potential issues and helps them prepare questions and discussion points to use during meetings with their physician. A CRCMC navigator also accompanies patients when they see the doctor and each consultation is audio-recorded. A written summary of the medical appointment is then given to patients for future use.
“When I was diagnosed breast cancer a year ago, I realized how absolutely essential it was to know what questions to ask,” recalls CRCMC client Veronica Casey. “With cancer, there was so much information; I don’t know how anyone gets through the system without help. At CRCMC, Carla Jupiter became my navigator,” says Casey, who lives high on a mountain ridge, 25 miles outside of the town of Mendocino with her husband.
“I had a herceptin positive tumor and I wouldn’t have understood what it was about without going through the CRCMC counseling,” Casey says. “They helped me work out my life plans and expectations and figure out how I wanted to handle treatment because I had my doubts. My physician wanted to put me on TCH [an arduous, three-drug regimen], but at first I didn’t see the point. I’m 73; I didn’t want to feel like 83. But I did try it for a year and eventually got the therapy tailored to my needs,” explains Casey who says she is now feeling great. “CRCMC helped me to feel clued in. I realized I knew my options,” she says, adding that she traveled 50 miles to get her lumpectomy and 35 miles for treatment.
An Award-Winning Model for Community-Based Participatory Research
The success of CRCMC’s straightforward decision-making support tool is one of the reasons the organization won the 2010 Faith Fancher Award from the California Breast Cancer Research Program. Working with Jeffrey Belkora, Ph.D., a researcher from the University of California at San Francisco, CRCMC’s patient decision support program is the subject of research looking at “how people store and share their CRCMC question lists, recordings and summaries. This is important because other agencies are adopting these communication aids as well. Our study will produce guidelines for assuring patient safety and privacy when people use these records to coordinate care,” Belkora says.
“We are also just finishing up a study comparing telephone delivery of decision support to the current standard, which is in person support. We presented at the International Shared Decision Making Conference on June 20, 2011,” Belkora adds. “Our preliminary findings suggest that telephone delivery is as effective, costs no more, and is valued as highly as in-person decision support. This is important because the resource center can use the telephone to reach isolated patients, confident that they are getting a quality service.”
The RWJF Connection
During her Community Health Leader (CHL) term, O’Donnell says she learned a great deal about succession and transition planning as a method for creating continuity in her program. She is also grateful for RWJF’s ongoing support. “The rich interconnectedness that exists because of the CHL annual meetings is a great help. And now that’s enhanced by the online Alumni Network. I watch it daily to see what comes up. It’s a wonderful resource where people give information to each other freely. I’m very thankful to the Foundation for its ongoing support of program members,” she says.
Going forward, O’Donnell says that CRCMC will not only continue its work for the community, it will be an ongoing site for community-based participatory research projects designed to improve rural health care.
RWJF created the Community Health Leaders program to recognize individuals who overcome daunting obstacles to improve health and health care in their communities. Since 1993, the CHL award has been presented to 187 individuals in 45 states and Puerto Rico. CHL program goals include: Increasing the visibility and exposure of the leaders and their work to the nation; enhancing and enriching leadership development skills for the leaders; and increasing opportunities for the leaders to establish new relationships and expand their influence to improve health outcomes in communities.