To determine which factors affect quality care for women with ovarian cancer, the Alliance convened a Report Card Advisory Committee consisting of experts in policy, women’s health and oncology; ovarian cancer survivors; medical professionals; and state legislators. The committee identified four major categories that influence care: Access, Education and Awareness, Quality of Life and Research Support. Within each category, committee members selected basic criteria, such as access to gynecologic oncologists or provider education, that are crucial for providing quality care to women with ovarian cancer. For each criterion there was at least one element that we evaluated as part of the state’s overall score.
Based on the Advisory Committee’s recommendations, and staff experience and expertise, we reviewed specific laws and programs in all 50 states and the District of Columbia. Data sources included Lexis Nexis as a primary source (for access to relevant legislation) and secondary sources, such as reports from other organizations with subject-area expertise (see Data Sources by Element). For example, we referenced a report card from the Center to Advance Palliatiave Care in order to determine the number of palliative care programs available in each state.
Once this research was complete, we worked with Advisory Committee members to rank each element in terms of its importance for the provision of quality care to women with ovarian cancer. We assigned a number of points to each element and ranked each state based on the number of points it earned.
The findings and recommendations in this report were reviewed by the Report Card Advisory Committee, and the findings have been shared with state governors’ offices and Partner Members of the Alliance.
This is a first-time examination of the opportunities states take to create an environment within which women can access quality care for ovarian cancer. To accomplish this task, with the assistance of the Report Card Advisory Committee, project staff sought to identify state laws and regulations that facilitate provision of quality care. Staff also identified ovarian cancer programs that illustrate a state’s commitment to providing support for women with this disease.
For this initial look at the access women have to quality care for ovarian cancer in all the states, we selected a limited number of criteria and elements. These criteria and elements provide an overall look at various aspects of care that can be influenced by a state. We did not look in depth at any single aspect of care, nor were data available for many elements we would have liked to look at—or to look at in more detail. We may not have included criteria that are particularly important to you and your constituency.
In addition to the limited selection of criteria and elements, the scoring system we used provides only a snapshot of the state’s approach to providing a framework for and supporting the delivery of quality care for women with ovarian cancer. A later repeat of this project will include, for example, selected case studies that will add depth to our analyses of specific states’ approaches. We welcome input on how we can refine our methodology to improve future editions of this report card.
We also welcome input about sources for the following data:
- Support for Clinical Trial Participants: States, or programs existing in the states, that provide access to support services like transportation for patients enrolled in clinical trials.
- Continuing Medical Education: States that require Continuing Medical Education hours for physicians or other health providers specifically focused on ovarian cancer.
- Tumor Banks: Number and location of tumor banks that hold samples of tumors, which can be accessed by researchers throughout the United States for study. While there are tumor and cancer registries in every state, and a few private tumor banks, we were unable to find public tumor banks that would share information with researchers.
- Research Funding: While the research dollars included in this report represent a majority of nonprofit research spending, this component lacks some richness that including other nonprofit and for-profit research funds would have provided.
- State Appropriations: States that appropriate money for ovarian cancer research. We found that many states did not create a budget with sufficient detail to determine whether any state money was dedicated to ovarian cancer research. Some of the money that was appropriated for the university systems may have been allocated to ovarian cancer research, but since it was not within the state appropriations budget we could not confirm that. Also, many states’ budgets could not be searched by keyword, which made it difficult to find cancer-related appropriations.
- Cancer Plans: Many plans were unavailable or out-of-date.
- Survivorship Programs: The only reliable measure we could find for survivorship programs was the LiveStrong Survivorship Centers of Excellence, which are present in only eight states.
Our research for this report was completed in July 2011. Between the publication of this report and data collection for the next edition, we will engage in additional discussions with state administrations and legislatures, Alliance Partner Members, other local ovarian cancer groups and members of the Report Card Advisory Committee to review and refine the data collected to date, identify additional data and data sources, and refine the scoring system.
Every state has room to improve based on the elements in this Report Card—even the best performing state only addressed 60 percent of the elements we included. The states varied greatly in their level of access to care for women, education/awareness, support and the amount of research implemented. Some states, for example, have a tax check off to support research or fund ovarian cancer research with state monies; some states receive no federal research funds and do not fund any research with state monies.
The majority of states had laws related to direct access to gynecologists, coverage of routine costs of care for clinical trials and had some genetic discrimination provisions.
Most states scored poorly on education and awareness. Just over half of states had cancer plans that were out-of-date or did not address ovarian cancer, and only half of the states offered the STS educational program. Few states had survivorship programs or the number of hospice programs considered adequate by the National Hospice and Palliative Care Organization, or legislated caps on co-payments.
A note on state rankings: states with the same score are considered to have the same rank. For instance, Illinois and Oregon are both ranked fourth. Since two states received that rank, the states with the next highest score were ranked sixth.