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Patient advocate

Over the last two years, the UAB Breast SPORE has developed outstanding interactions with breast cancer survivors who are assisting the SPORE in its translational research efforts and are sharing their experiences with other breast cancer patients / survivors. These breast cancer survivors, Ms. Jan Bolla, Ms. Donna Cline, and Ms. Pat Tolbert, are advocates for the patients / survivors in all aspects of the UAB Breast SPORE. Their personal experiences and ongoing enthusiasm are encouraging the UAB Breast SPORE investigators in their translational research efforts.

Roles. The efforts of the patient advocates are initiated in concert with the needs of the UAB Breast SPORE investigators and directed by the Dr. K.I. Bland (P.I.). The patient advocates meet and interact with the UAB Breast SPORE investigators on a regular basis to stay acquainted with the ongoing translational research and to enable the education of other breast cancer patients / survivors regarding progress in the fight against breast cancer, especially, new preventative and therapeutic strategies. The UAB Breast SPORE patient advocates provide educational materials and supplementary information to breast cancer patients / survivors, community groups, and underserved populations. Since 20% of UAB and the UABCCC breast cancer patients are African-American, Ms. Pat Tolbert, who is also African-American, ensures there is the appropriate emphasis on minority populations in patient advocate planning and in all activities. An emphasis is also placed on providing careful explanations of breast cancer care to all patients, including rural populations and those with less education. An important additional role of the UAB Breast SPORE patient advocates is to assist in identification of barriers to ongoing translational research such as might occur in acquisition of breast tissues for the UAB Breast SPORE tissue bank or accrual of study subjects to clinical trials. The patient advocates encourage the UAB Breast SPORE investigators to utilize language that is easily understood by the lay public to engender increased participation in, and understanding of, translational research. Lay abstracts are provided below that describe the goals of the five major projects in the UAB Breast SPORE competing renewal application.

Goals. The UAB Breast SPORE patient advocates have delineated a clear set of goals for their ongoing activities, which include efforts to:

•  Transmit the inherent value of translational research in breast cancer to patients / survivors and communities

•  Provide comprehensive informed consent for translational studies

•  Raise awareness of the scope of UAB Breast SPORE activities such as tissue procurement and clinical studies, including intellectual property rights, patient safety, and the confidentiality of patient information

•  Participate in UAB Breast SPORE work in progress reviews and provide input regarding patient care, and minority issues

•  Review patient care and clinical studies protocols

•  Interface with the UAB IRB and activate community advocate networks as needed

•  Provide advice / consultation to all UAB Breast SPORE investigators

•  Facilitate discussions with visiting scientists, other institutions, corporations, and government organizations

•  Contribute to the design and implementation of clinical studies, including follow-up

•  Be inquisitive: “How does the proposed research improve care for breast cancer patients / survivors?”

An overriding objective of the UAB Breast SPORE patient advocates is to insure that common terminology is utilized in the conveyance of scientific information to breast cancer patients / advocates, which allows for improved comprehension when dealing with life threatening cancer and the inherent psychological and emotional stress. The patient advocates are participating in the development of the UAB Breast SPORE competitive renewal application. At their initiation, lay abstracts of the five major projects comprising the renewal application were developed.

Interactions. The UAB Breast SPORE patient advocates participate in the every sixth week work in progress reviews and in internal and external advisory meetings. Ms. D. Cline participated in the annual NCI-sponsored SPOREs workshop convened in Baltimore , MD this last July. She attended the luncheon for the principal investigators and participated in the patient advocate discussions that took place. Ms. D. Cline will participate in the Breast SPORE Round Table meeting that is scheduled in Boston , MA in November 2004. She is becoming more involved with the Patient Advocate Research Team (PART), a national patient advocate effort led by Deborah Collyar, former director of the UCSF Breast SPORE Advocacy Core. Among other things, this organization is focusing on tissue procurement processes, including the identification of problems and successes. An effort is underway to capitalize on successful strategies and to apply these nationally. Ms. D. Cline, who is a former IRB administrator, has been an active participant in this process. She and the other UAB Breast SPORE patient advocates have participated in conference calls to develop and implement strategies to speed the approval process.

Future Plans. The UAB Breast SPORE advocates are meeting with co-leaders of the major projects in the competitive renewal application to better understand the project goals and objectives and to assist in their implementation. They are creating a list of “best practices” regarding IRB and HIPPA regulations. They are building a larger pool of patient advocates to draw from for review of UAB Breast SPORE clinical studies, including consent forms, and to disseminate information regarding the SPORE. In addition to continuing their current activities, the UAB Breast SPORE patient advocates will:

•  Raise public awareness regarding Breast SPORE programs through participation in national activities, including interactions with patient advocates from other SPORE programs

•  Increase interactions with breast cancer support groups such as the Susan G. Komen Foundation, the American Cancer Society, The National Breast Cancer Coalition (NBCC), and PART

•  Develop innovative strategies for improving communication between basic investigator, clinical investigators, and breast cancer patients / survivors to take maximum advantage of the translational research opportunities provided by the national SPORE program.