That was a conclusion reached by a unique coalition representing all five major health-care systems in the Birmingham area and published recently to coincide with October as Breast Cancer Awareness Month.
The community report by the Breast Cancer Survivorship Rehabilitation Initiative (BCSRI) is a comprehensive summary of a year-long survey conducted as part of a grant from The Women’s Breast Health Fund of the Community Foundation of Greater Birmingham to assess breast cancer survivorship services in the surrounding five-county area.
Working together in an unprecedented partnership, representatives from the University of Alabama at Birmingham (UAB) Health System, including the UAB School of Nursing, Baptist Health System, Brookwood Medical Center, St. Vincent’s Health System and Trinity Medical Center confirmed that cancer and other health-care providers need to be more aware of survivorship as a distinct phase of cancer care.
UAB School of Nursing Professor and Associate Dean for Research Karen Meneses, PhD, RN, FAAN, likens it to someone travelling down a busy highway until they reach an unfamiliar crossroad where they are unsure which way to turn.
“That is a very good analogy,” said Meneses, who serves on the BCSRI Leadership Team. “We say, ‘Go for your screening, detect it early, go for your treatment, here are the things we can do,’ but then we don’t tell them what to do after that. It’s like they reach that crossroad without a map that tells them where to go next.
“More than anything else, the basis of this was ‘Wow’ we have basically five programs that may offer services, but there still may be gaps.”
Over the first fours months of 2015, BCSRI representatives conducted an assessment of the breast cancer survivorship services available in Blount, Jefferson, Shelby, St. Clair and Walker counties through surveys and one-on-one discussions with respondents – including health-care professionals -- and later through focus groups. They also conducted interviews with the directors of 12 cancer survivorship programs across the country.
The collected data was then reviewed by a committee made up of community leaders and experts in the field of cancer survivorship which provided its feedback.
Women’s Breast Health Fund Director Madeline Harris RN, MSN, OCN, a graduate of the UAB School of Nursing who previously worked with Meneses on the Rural Breast Cancer Survivors Intervention study, was thrilled by the spirit of cooperation among the stakeholders which resulted in a second grant that will fund the program for an additional 16 months.
“What’s most exciting to our advisory committee for our fund is that all the health-care systems that represent the five counties that the Community Foundations covers plus the UAB School of Nursing actually agreed to work together to look at this comprehensive program or some kind of support system for breast cancer survivors and their loved ones,” Harris said.
“We only really had 10 months of hard assessment work trying to build those relationships among the hospitals and assess our breast cancer community (members) as to what they felt they needed so that we could have this document provided and have guidance as to where we are going with our program. So they all worked together and collaborated and have agreed to continue working together for the next 16 months, and that is wonderful to see.”
The key findings
After assessing the collected data, which included the survey responses from 168 survivors or co-survivors and 67 health-care professionals, the committee identified the following “cracks” in the collective system through which survivors seem to fall:
- Due to decreased funding, support services for survivors and their co-survivors are lacking.
- Where services do exist, there is a disconnect between services that are offered and communication to survivors about those services.
- Post diagnosis, survivors often do not know where to go for services even within the same health-care system.
- There is an overall need for better education and outreach, particularly to vulnerable populations, especially those in rural communities.
As early detection and treatment options for breast cancer patients continue to improve, it is estimated the number of survivors will increase by 30 percent in the next decade. Knowing that more people will need guidance in the future means that answers need to be found now, Meneses said.
“Breast cancer survivors constitute the largest percentage of women with cancer who are survivors, about 22 percent,” Meneses said. “They are out there. They are talking. It’s not like it’s a secret or kept in a closet.
“We’ve come from silence to discussion. Now we have to go from discussion to action.”
The Community Foundation of Greater Birmingham took action by approving funding for a second grant for an additional 16 months that will allow for continued collaboration by the five health-care systems on developing a shared services model to address the issues.
“Our dream is to have a fully functioning, integrated and accessible array of holistic services supported by all the area hospitals,” said Christopher Nanni, President and CEO of the Community Foundation. “As we develop this model, we will begin offering limited services in January of 2016. Our ultimate goal is that this program will serve as a model for other cancers and chronic illnesses.”
It all comes down to everyone involved in the BCSRI wanting to improve the healing process for those future survivors.
“The Women’s Breast Health Fund was set up by women who were survivors and who wanted other women to have a better outcome than they had or they didn’t want the other women to have as much suffering or maybe as much decreased quality of life as they did,” Meneses said. “The longer we have survivors, the more we learn about their experiences, and with those experiences they want others not to have to go through what they have gone through.
“It’s always about wanting to make things better for the next person who has this terrible disease.”
About the Community Foundation of Greater Birmingham
Founded in 1959, the Community Foundation is a permanent charitable endowment that serves Jefferson, Blount, Shelby, St. Clair and Walker counties and is the oldest and largest community foundation in Alabama. The foundation awards grants to area non-profits through a competitive process as well as from donor-advised funds. Through grant making, convening and leading, the Community Foundation works in partnership with donors, non-profits and the community to improve the life of the Greater Birmingham region.
About the Women’s Breast Health Fund (WBHF)
The WBHF was established as a Field of Interest Fund of the Community Foundation of Greater Birmingham in 2009. The purpose of the fund is to provide support for holistic breast cancer care for women and their loved ones from time of diagnosis for the rest of their lives. Recent grants have supported the creation of the Young Breast Cancer Survivors Network, the launch of a Cancer Resource App and UAB’s Harvest for Health Study supporting a gardening project for breast cancer survivors.