Consultation Support for Diverse Rural Breast Patients

Institution: Humboldt Community Breast Health Project
Investigator(s): Dawn Elsbree, MBA - Jeffrey Belkora, Ph.D. -
Award Cycle: 2005 (Cycle 11) Grant #: 11AB-3601 Award: $40,790
Award Type: CRC Pilot Award
Research Priorities
Community Impact of Breast Cancer>Disparities: eliminating the unequal burden of breast cancer

This is a collaboration with: 11AB-3600 -

Initial Award Abstract (2005)
Introduction: In past work, our team has helped patients prepare a list of questions (or Consultation Plan) before their meetings with breast care specialists. Now we understand that patients need help “drinking from the fire hose” when their doctors actually try to address all the issues raised. We discovered this when we conducted 6 focus groups and 5 interviews with 45 physicians, community health leaders, and survivors. These community representatives directed us to support patients during and after specialist consultations. They specifically identified audiorecording, note-taking, and debriefing as promising interventions to explore.

Hypotheses: Our research question is “how can we help patients absorb, remember, and act upon the information and advice they get from breast specialists?” This question applies to patients at any stage of breast health, from prevention to metastatic follow-up. We are particularly focused on answering this question with regard to the significant Native American and Latina minorities in our counties, who may face cultural and language barriers in addition to the common rural challenges of poverty, geographic isolation, and health literacy. Our hypotheses are that we can successfully assess what key stakeholders would like to see by way of Consultation Support; design interventions that meet these requirements and that our health system can deliver; and test the acceptability of Consultation Support to doctors and patients.

Methodology: First, we will interview 12 doctors, 12 patients, and 8 community health agency staff members. We will probe for very specific examples of what doctors, patients, or other people have said or done that helped or hindered patient understanding, recall, and decision-making. We expect that audiorecording, note-taking, and debriefing will emerge as critical success factors, but we hope to surface many others. We will circulate a summary Requirements Document for feedback and revision, and draft program specifications that address each requirement. Finally, we will test the resulting Consultation Support service with 18 diverse breast patients and their doctors to determine its acceptability.

Innovative elements: Recently, breast patients are increasingly advised to “take a tape recorder” and “bring a friend along to take notes for you.” This common-sense advice has even been evaluated in urban teaching hospitals and cancer centers, and has proven effective in increasing patient satisfaction and knowledge. However, no one has evaluated and implemented such Consultation Support in rural areas with diverse populations. Our project also stands out in its focus on Native American and Latina minorities, and our ability to leverage our existing Consultation Planning study.

Community involvement: 45 community members provided input to the development of this proposal, as well as 60 resource center board members, advisers, staff, and volunteers. We will also carry over from our existing grant the 24-member, bi-county Advisory Board that helps us with outreach and community relations. In general, our two resource centers serve as clearing-houses for information and support to breast patients and are fully integrated into the county health systems. We have established formal or informal relationships with primary care networks and specialty clinics, and with minority-focused agencies such as United Indian Health Services and Latino Net in Humboldt, and Consolidated Tribal Health Project and Nuestra Casa in Mendocino. We have secured 43 letters from community representatives pledging their collaboration.

Final Report (2007)
The topic under consideration in this study was the question, "How can patients, their accompaniers, and their doctors make the most of consultations leading to major treatment decisions in breast cancer." Our aim was to uncover stakeholder needs and document the implied requirements for supportive interventions, particularly those provided by the resource centers conducting this study. We were successful in collecting interview data from 12 doctors, 10 community health agency staff, and 12 diverse (4 Native American, 4 Latina, and 4 White) breast cancer survivors. We successfully analyzed this data to reveal stakeholder needs and design ways of meeting them. The main barriers we had to overcome related to the difficulty of scheduling and conducting interviews with busy and sometimes hard to reach key informants; and to identifying themes in the interview that were agreed upon by all 8 members of our research team, including 6 resource center staff.

The purpose of the interviews was to determine critical success factors and barriers promoting or inhibiting productive patient-physician consultations. These semi-structured interviews were based on the Critical Incident Technique, a focused method that allows data to be collected from the participant’s perspective and in his or her own words. Interviews were recorded and critical incidents were extracted to a data outline.

We uncovered 33 themes in the data leading to specific requests made by patients, accompaniers, and doctors of each other. We developed a summary of these requests and are in the process of presenting them to each audience, e.g. showing doctors what patients request of them.

The requests, addressed to patients, doctors, and accompaniers, included:

The most surprising and interesting finding was the paucity of unprompted references to audio-recording appointments. This is surprising because academic studies suggest audio-recording is highly beneficial as a way of capturing detailed information that can be reviewed later, and we expected informants to raise it as an effective practice. Instead, it did not register as a theme. Only one person made reference to it unprompted. In the last phase of each interview, when we prompted informants about audio recording, informants did in fact have reactions, ranging from most patients and accompaniers seeing it as effective or potentially effective, to specialists who were divided as to its effectiveness. We have identified this as an area for further investigation.

Consultation support for rural women with breast cancer: Results of a community-based participatory research study.
Periodical:Patient Education and Counseling
Index Medicus: Patient Educ Couns
Authors: Franklin, L., J. Belkora, S. O'Donnell, D. Elsbree, J. Hardin, B. Ingle, and N. Johnson
Yr: 2010 Vol: 80 Nbr: Abs: Pg:80-87

Using the critical incident technique in community-based participatory research: a case study.
Periodical:Progress in Community Health Partnerships
Index Medicus: PCHP
Authors: Belkora, J., L. Stupar, and S. O'Donnell
Yr: 2011 Vol: 5 Nbr: 4 Abs: Pg:443-51