A Blueprint for Advancing Quality in Breast Cancer

Institution: University of California, San Francisco
Investigator(s): Laura Esserman, M.D. -
Award Cycle: 2005 (Cycle 11) Grant #: 11MB-0181 Award: $24,586
Award Type: Joining Forces Conference Award
Research Priorities
Community Impact of Breast Cancer>Health Policy and Health Services: better serving women's needs

Initial Award Abstract (2005)
Introduction: There is a growing consensus around both the need to address issues relating to the quality of healthcare in America and the importance of measurement and feedback on performance as tools to promote quality. In breast cancer, system barriers often prevent the coordination over time and between specialties that quality care requires, practice varies widely between providers, expensive technologies are used inefficiently, and disparities persist in women’s access to cutting-edge treatment. While a number of efforts seek to use measurement to drive improvement in breast cancer care, all are hampered by the inadequacy of current information systems to capture and report on the processes and outcomes most relevant to quality.

Hypotheses: The aim of the proposed conference series to develop a “Blueprint for Advancing Quality in Breast Cancer Care" is to build consensus around a strategy for creating systems capable of surmounting the barrier to measurement in one disease area as a model for system-wide change. The blueprint would address three questions: 1) What data must information systems of the future be able to collect in order to enable more robust measurement of breast cancer care quality and better understand variation in care? 2) How can feedback on quality be most effectively used to drive change on the level of the clinic and practitioner? 3) What design principles should guide the creation of systems capable of capturing information related to quality as a routine byproduct of care?

Methodology: To investigate these questions and develop the blueprint, we propose to conduct three workshops attended by invited experts in measurement science, health policy, health disparities, information technology, quality improvement and the practice of breast cancer care as well as patient representatives. We further propose to develop findings from these one day workshops as publishable papers and to present these papers at a national summary conference we will plan for June 2006. Speakers for this public meeting will be chosen to catalyze efforts to implement the quality blueprint. We are asking CBCRP to support the conduct of, and participant travel to the first workshop, "Toward a Quality Blueprint: Measurement in Breast Cancer," planned for October 28, 2005 at Harvard Business School.

Innovative elements: While there has been important work to survey, standardize, and develop quality measures in breast cancer care, all of these efforts have been limited to what it is feasible to collect with today’s information systems. The proposed workshop is about envisioning what we would measure and what data we would collect if systems had the capacity to capture quality-related information at the point of care. In doing so we would be creating a blueprint to spur the creation of these systems. The conference series is designed to create tangible work product and to generate a national consensus around the proposed blueprint.

Advocacy involvement and human issues: Improving the quality of care is one of the six elements of the National Breast Cancer Coalition’s vision for breast cancer care, and the development and use of new quality measures is a principle objective of the organization’s Quality Initiative. Advocates and patient representatives will be involved at every level in planning for and conducting this conference series: on the Steering Committee to refine focus and select participants, as pre-workshop consultants helping to refine the survey of measures and data elements that describe quality, and as workshop participants to present on what quality means to women facing breast cancer. The creation of new information systems will help ensure that every woman receives care that is as safe, effective, efficient, timely, equitable and patient-centered as possible.

Final Report (2006)
There is growing consensus around the need to address quality improvement in US healthcare and the importance of measurement and performance feedback as tools to promote quality. In breast cancer, system barriers prevent coordination over time and between specialties that quality care requires, practice varies widely, expensive technologies are used inefficiently and disparities persist in women's access to cutting-edge treatment.

This project supported research about critical measures in breast cancer care that can inform innovations to facilitate data collection and improve feedback at the point of care. This was accomplished by convening leaders across disciplines and industries to review needs and outline next steps around building consensus for a strategy to create systems and processes to overcome these barriers in a single disease area (breast cancer) as a model for system wide change.

Output of this research and convening was used to create a broad collaborative network (team) of professionals to support and produce recommended improvements.

A literature search and review of key points and major initiatives nationally allowed the team to identify key informants to interview about the topics of interest and to develop an interview protocol. Twenty-three interviews were conducted with stakeholders associated with quality improvement in breast cancer care and in IT development around patient data. Respondents were primarily (over 35%) providers, researchers and clinical program administrators, in addition to payors/purchasers, advocates/survivors, policy makers, IT innovators (about 10% for each group). Many respondents crossed categories of expertise.

Outcomes: Two major barriers emerged from the interviews: data availability and interoperable systems, and standardization of data elements. Additional barriers mentioned were: accuracy of available data, lack of financial support for efforts, time to develop, HIPAA and other liability concerns, fragmentation of care and how to manage legacy systems (including paper medical records). An interesting barrier mentioned was "cultural change and perceptions:"

The work done during the funded period enabled project staff to establish meaningful relationships with collaborators across the US to respond to areas of change outlined in the findings. Major activities included: •Planning for the national quality summit (conference) which will be open to invited participants and registrants interested in pursuing quality improvement in IT and clinical areas as recommended by the project; anticipated Fall 2007.
•Ongoing work to determine a satisfactory publication method for professional articles/book sections arising out of this project. The goal is to publish prior to the national summit to increase interest in participation by a broader audience. CBCRP will be acknowledged for its support of this work regardless of final publication date.
•Based on outputs of the first of three workshops (January 2006) conference staff members worked with the UCSF Center of Excellence for Breast Cancer Care (COE/BCC) to design and pilot a customizable pathology data collection and storage application which, as of October 2006, shows promise as a tool to support physician clinical decision making in breast cancer treatment (staging). Pilot work on this project will continue through Spring 2007 at which time, determination will be made by UCSF Comprehensive Cancer Center as to instituting this application in clinical processes across departments.
•Participants at the 3rd workshop in Mountain View CA, May 2006, suggested that effective patient-entered data processes (such as that in Personal Health Records (PHR)) could help overcome certain issues in data consistency and sharing across treatment locations, thus improving of care for patients receiving care at multiple sites and the care providers working with them. The involvement of CHCF in the workshops prompted them to involve COE/BCC staff in the development of PHR projects in California through an advisory panel they have convened for 17 meetings over the next 12-18 months (Sept 2006 – March 2008).
•COE/BCC submitted an application to participate in nationwide PHR development sponsored by the Robert Wood Johnson Foundation (selection pending). Both efforts will enable further experimentation with the effectiveness of this approach.
•Nearly all Steering Committee members and over 40 percent of conference series participants continue to be involved with ongoing program development and coalition/network building activities related to the workshops and their outputs. Members of this group are working with each other and with Dr. Esserman and related UCSF program staff to build on the work done as a result of this CBCRP-funded project.