Power of the personal: Medical advocacy's lifesaving role for African-American cancer patients

New study demonstrates the impact of clear discussions, support from medical providers - and shows room for improvement
Bridgette Hempstead, founder of Cierra Sisters Inc.
Bridgette Hempstead is founder of Cierra Sisters Inc., a support organization for African-American breast cancer survivors. Photo by Robert Hood / Fred Hutch News Service

Bridgette Hempstead’s phone rang late one night. On the other end of the line was a distraught woman with breast cancer who’d been told by her oncologist to “get her things in order” because she likely had less than three months to live.

“She called me at 10 p.m., in despair and hopeless,” recalled Hempstead, president and founder of Cierra Sisters Inc., an African-American breast cancer survivor support organization based in Renton, Washington. “She told me she did not want to die.” Because of her doctor’s decree, however, this woman was faced with the possibility of giving up all hope.

Hempstead quickly helped secure an appointment with a second doctor for the woman, who was then able to ask more questions and get additional information about her condition. This doctor looked over her medical records and determined that there was, indeed, more that could be done for her.

“One year later,” said Hempstead, “and that woman is still living.”

New research suggests that this patient’s survival can be credited, in part, to the power of medical advocacy.

Hempstead is one of the authors of a Fred Hutchinson Cancer Research Center study published earlier this month that focuses on how medical advocacy also can improve outcomes for African-American women who face a potential breast cancer diagnosis after receiving abnormal mammogram results. For the study, published in the Journal of Cancer Education, authors defined medical advocacy as an individual’s “ability to seek, evaluate, and use information to promote one’s health”.

Previous studies have found that following an abnormal mammogram, African-American women have greater delays in receiving crucial follow-up care compared with non-Latina white women. Research has also shown that African-American women are less likely to obtain mammograms regularly, in part due to previous experiences with mammography.

"These disparities may be related to poor patient-physician communication, including discrimination, which African-American women tend to experience," said lead study author Dr. Yamile Molina, a postdoctoral researcher at Fred Hutch.

Negative experiences in medical settings, and resulting mistrust in health care, may lead to lower perceived ability to advocate for one's self in medical settings and a reluctance to adhere to recommendations for future medical care. Simultaneously, advocacy has impacts. Previous studies have shown when a woman feels able and encouraged to ask questions, make decisions and actively participate in her care, the likelihood of adherence to medical recommendations – including diagnostic follow-up after abnormal mammograms – is increased.

“Understanding the importance of advocacy for patients and what providers can do to support patient advocacy can be seen as a solution to this problem," Molina said.

Building on what works

For the study, funded by the National Cancer Institute, the researchers interviewed 28 African-American women between 30 and 74 years of age. The women were recruited by community-based groups, mobile mammography services and the local department of health. Each woman had received an abnormal mammogram result in the past four years.

The majority of women in the study described positive experiences relating to playing a role in their own care and emphasized the importance of medical advocacy for African-American women.

“Most of the existing literature on the topic of medical advocacy and African Americans focuses on barriers to care and negative experiences,” said Molina. “We wanted to look at improvements to care and find out what is already working for these patients.”

The reasons that advocacy is a factor in positive medical experiences for African-American women are twofold. First, study participants felt that engaging in medical advocacy helped address “historic and ongoing mistrust and experiences with racism in medical settings,” the authors wrote.

Second, participants expressed the concept of being accountable for their own bodies. “Patients want to be involved in decisions about care because they feel strongly that they know their bodies best, that they are accountable for their own systems,” said Molina. “Medical advocacy is a way to get your voice out there and be heard.”

The power of information and empathy

The current study's findings suggest a patient's ability to engage in advocacy is largely a function of the quality of communication she receives from her health care provider.

"The advocacy issue really is tied to satisfaction," said Molina. "It may be difficult for practitioners to 'become comfortable with the discomfort' that talking about cancer and cancer disparities entails, but honesty and empathy have extreme advantages in terms of patient satisfaction and adherence."

Notably, other work has indicated poorer communication between providers and African-American patients, including provider-dominated interactinos. This study emphasizes what can be done to improve communication and encourage medical advocacy in African-American patients:

  • Details matter. Patients benefit from receiving as much information about their condition and prognosis as possible, said Molina. Sharing honest details about test results, diagnosis, and next steps allow women to develop questions that draw from and build on their existing knowledge. Patients also appreciate being asked if they have any questions, preferences or concerns. Providing clear, detailed information and encouraging patients to indicate their points of view goes a long way to develop crucial trust between patients and practitioners.
  • Let empathy lead. A patient’s satisfaction with care and decision to obtain future care may depend on her practitioner’s tone and personal affect. Participants reported that providers who delivered information in a warm manner during diagnostic follow-up care instilled confidence and provided comfort during a period of uncertainty about a cancer diagnosis.

“Women in our study emphasized this,” said Molina. “Even with their limited time and resources, physicians need to deliver information while showing caring and empathy.”

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Joely Johnson Mork is a Seattle-based freelance health and science writer/editor whose work has appeared in numerous consumer health books, as well as in Prevention and TIME. Her personal essays have been heard on NPR. Mork has a master’s degree in community health education and is a certified yoga instructor. Reach her at jaycubed@earthlink.net.

Solid tumors, such as those of the breast, are the focus of Solid Tumor Translational Research, a network comprised of Fred Hutchinson Cancer Research Center, UW Medicine and Seattle Cancer Care Alliance. STTR is bridging laboratory sciences and patient care to provide the most precise treatment options for patients with solid tumor cancers.

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