A.1 Prototype Indicator Set: Breast and Cervical Cancers

BACKGROUND

Breast and cervical cancers are major causes of death and suffering among women in the United States. Although each disease has a distinct etiology, screening currently is the principal preventive intervention for both. Communities may want to develop an integrated approach to diseases such as these that are of concern to a specific segment of the population.

Breast Cancer

Breast cancer is the second leading cause of cancer death among women. It accounts for 31 percent of all newly diagnosed cancers in women and 17 percent of women's cancer deaths (American Cancer Society, 1996). It is estimated that over a lifetime one out of nine women is affected by breast cancer (American Cancer Society, 1995). Screening procedures such as clinical breast examination and mammography can help detect breast cancer at an early stage, which significantly increases chances for successful treatment and cure. Use of mammography screening and clinical breast examination have been associated with reductions of 20–30 percent in breast cancer mortality in women over age 50 (Kerlikowske et al., 1995). In general, cancers are detected



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Improving Health in the Community: A Role for Performance Monitoring A.1 Prototype Indicator Set: Breast and Cervical Cancers BACKGROUND Breast and cervical cancers are major causes of death and suffering among women in the United States. Although each disease has a distinct etiology, screening currently is the principal preventive intervention for both. Communities may want to develop an integrated approach to diseases such as these that are of concern to a specific segment of the population. Breast Cancer Breast cancer is the second leading cause of cancer death among women. It accounts for 31 percent of all newly diagnosed cancers in women and 17 percent of women's cancer deaths (American Cancer Society, 1996). It is estimated that over a lifetime one out of nine women is affected by breast cancer (American Cancer Society, 1995). Screening procedures such as clinical breast examination and mammography can help detect breast cancer at an early stage, which significantly increases chances for successful treatment and cure. Use of mammography screening and clinical breast examination have been associated with reductions of 20–30 percent in breast cancer mortality in women over age 50 (Kerlikowske et al., 1995). In general, cancers are detected

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Improving Health in the Community: A Role for Performance Monitoring at more advanced stages among minority and poor women, and these women also have higher mortality rates. Major risk factors for breast cancer include older age, Caucasian race, higher socioeconomic status, and never marrying. Early onset of menstruation, late menopause, no full-term pregnancies before age 30, and never having given birth are additional risk factors. A family history of breast cancer in a woman's mother or sister is an important risk factor for about 5–10 percent of total cases (Colditz et al., 1993; Slattery and Kerber, 1993). In general, these risk factors are not easily modifiable, but two behavioral factors, alcohol consumption and breast feeding, may offer opportunities to reduce risk. Consuming more than two alcoholic beverages a day appears to increase the risk of developing breast cancer (Longnecker et al., 1995), and breast feeding appears to have a protective effect (Newcomb et al., 1994). Identifying risk factors for breast cancer can provide some guidance for prioritizing screening and early intervention programs, but current screening guidelines rely primarily on age. Cervical Cancer Cervical cancer is one of the most curable cancers in women, if caught in time through early screening and intervention. Cervical cancer carries a five-year survival rate of about 90 percent if localized, but only 40 percent of women with invasive disease survive five years (Ries et al., 1994). Of concern is evidence that since 1986 the previous downturn in the incidence of cervical cancer in women over age 50 has reversed and that it is now increasing about 3 percent each year (Washington State Department of Health, 1994). Early intervention through effective screening is critical for influencing health and survival. Attention should also be given to the opportunities for prevention of cervical cancer. Risk factors include early age of sexual intercourse, multiple sex partners, human papilloma virus (HPV) infection (i.e., genital warts), lower socioeconomic status, and non-white race (Kjaer et al., 1992). Use of barrier methods of contraception appears to have a protective effect, perhaps due to decreasing exposure to HPV and other viruses (Slattery et al., 1989a). In addition, there may be an association between cigarette smoking and cervical cancer (Slattery et al., 1989b). An understanding of the risk factors for cervical cancer can point to interventions that can promote prevention. It can also help prioritize screening and early intervention programs, but efforts might also focus on

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Improving Health in the Community: A Role for Performance Monitoring increasing the proportion of women screened regardless of specific risk factors. ''FIELD" SET OF PERFORMANCE INDICATORS The field model encourages a shift from a focus on individuals to the community as a whole. The potential stakeholders for such an effort include all segments of the community. By using the domains of the field model, it is possible to identify a variety of measures that might serve as performance indicators for a community's efforts to improve the health of women by reducing the toll of breast and cervical cancers. Disease and Health Care Falling under the disease and health care domains of the field model are essential tasks for addressing breast and cervical cancer prevention. Currently, principal focus is on secondary prevention through screening programs. These programs require patient-provider interactions, support from the social environment, and cooperation of individuals. Possible indicators include the following: 1. Number of cases and rates (incidence and mortality) for breast and cervical cancers, including stage at diagnosis. Data on incidence are an important indicator of overall system-wide performance, however, this indicator is not likely to be sensitive to small changes or to small-area improvements. Nevertheless, incidence remains an essential indicator because it allows comparisons over time and over large populations. The collection and analysis of these data tend to be the responsibility of the public health system. Examples of more specific performance indicators that could be used in communities include the following: For each managed care organization (MCO) and the community as a whole, the number of cases and the incidence of breast and cervical cancers, by stage at diagnosis. For the community as a whole, the number of deaths and the death rate from breast and cervical cancers, by stage at diagnosis. 2. Access to affordable and quality-controlled mammography

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Improving Health in the Community: A Role for Performance Monitoring screening, clinical breast examination, cervical cancer screening (Pap test), and pelvic examination. Access to these four primary screening services is essential for utilization and follow-up to occur. Access is the first step in an effective early intervention breast and cervical cancer program. The qualifiers "affordable" and "quality controlled" were included to indicate that access is defined by certain expectations. Major stakeholders include health care providers, health plans, state health agencies, environmental health agencies, and community-based organizations. Health care providers and health plans are responsible for developing and offering screening programs. There is consensus that mammography should be performed every one to two years for women between the ages of 50 and 69 (U.S. Preventive Services Task Force, 1996), but consensus has not emerged regarding guidelines for women under age 50 or over age 69. A Pap test is suggested at least every three years for sexually active women (U.S. Preventive Services Task Force, 1996). Health care providers are also responsible for following quality standards established for breast and cervical cancer screening. The state public health system usually participates in setting regulatory standards such as mammography screening and laboratory standards. The state health department may also be involved in programs to reduce barriers to accessing services and to identify women who do not use services and the reasons why. Environmental health agencies may be involved in inspections regarding the safety of facilities and equipment. Community-based organizations such as community clinics and voluntary organizations such as the American Cancer Society may also be involved in identifying women in need of screening and in the standard-setting process. Although this indicator is primarily related to disease and health care, it also involves the social environment and prosperity. Barriers related to access, geography, and safety can be overcome by working with stakeholders from the social environment. Prosperity may dictate whether communities offer services at sufficient sites and whether women can afford to take advantage of the services. More specific performance indicators that could be used by communities include the following: Proportion and number of facilities offering mammography and Pap tests that meet federal and state regulatory standards.

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Improving Health in the Community: A Role for Performance Monitoring Proportion of health plans or insurers that cover 80 percent or more of the cost of breast and cervical cancer screening. 3. Referral and follow-up rates on results from positive mammography and Pap test screening. For women who have been screened, follow-up by health care providers and health plans of the results and recommendations from screening programs is essential to early intervention in the event of disease or evidence of high risk of disease. Local public health agencies are another important stakeholder; they may coordinate tracking programs that remind women about screening or may follow up women who are in need of care and lost to the system. An example of a performance indicator that could be used in communities is the following: For each health plan or insurer, the proportion of enrolled women with positive results for mammography or Pap testing who receive appropriate and timely follow-up care. 4. Rates at which physicians refer women for screening mammograms. Physicians are in a good position to educate, counsel, and refer women for mammography screening. This indicator engages individual providers as well as health plans, which must encourage physicians to make this a routine part of counseling for women in targeted populations. The advice of a primary care physician can be a strong incentive for women to seek preventive screening (American Cancer Society, 1993). The data for this indicator would be contained in medical records. Examples of performance indicators that could be used in communities are the following: For each MCO, family practitioner, internist, and obstetrician-gynecologist, the proportion of women served who should have mammography who were referred for mammography in the past 12 months. For each MCO, family practitioner, internist, and obstetrician-gynecologist, the proportion of referred women who received mammography within 30 days of referral.

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Improving Health in the Community: A Role for Performance Monitoring Behavior and Genetic Endowment A number of risk factors for cervical cancer are behavioral in nature and potentially modifiable. For example, age at first sexual intercourse, number of sex partners, cigarette smoking and contraceptive methods are modifiable if communities can effectively translate health promotion messages into behavior changes. Benefits conferred by changing these behaviors will extend well beyond a decreased risk of cervical cancer; risks of sexually transmitted diseases, lung disease, and unwanted pregnancy will also be reduced. Fewer of the risk factors for breast cancer are modifiable. Alcohol consumption and breast feeding are factors that can be modified; to an extent, age at first pregnancy may be modified. The influence of family history on the occurrence of breast cancer represents a potential focus for community activities. Women with a family history of breast cancer should be encouraged to modify their risk of disease, to the extent possible, through behavior changes. Another aspect of behavior that can change is seeking and using preventive and screening services. Potential indicators include the following: 1. Rates of tobacco use and alcohol consumption among women. Cigarette smoking and alcohol consumption (of two or more drinks per day) are especially important lifestyle factors. To date, evidence of their relationship to cervical and breast cancers remains only suggestive of an association (Slattery et al., 1989b; Longnecker et al., 1995), but cigarette smoking and alcohol consumption are known to be linked to numerous other causes of morbidity and mortality. 2. Proportion of sexually active women who use barrier methods of contraception. Epidemiologic data indicating that barrier methods of contraception (i.e., condoms or diaphragms) reduce a woman's risk of cervical cancer are consistent with researchers' understanding of the viral etiology of the disease. Studies reviewed by the U.S. Preventive Services Task Force (1996) showed substantial reductions in risk for both condom users (20–60 percent) and diaphragm users (30–80 percent). It has also been suggested that spermicides have antiviral properties that can contribute a protective effect.

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Improving Health in the Community: A Role for Performance Monitoring 3. Utilization of screening programs by women at risk for breast and cervical cancer. Access is only the first step in an effective program. Women must use the services once access is established; therefore, their individual behavior and response are important. The following are examples of performance indicators that could be used in communities: For each health plan or insurer, the proportion of enrolled women who should have breast and cervical cancer screening who received appropriate screening services in the past 12 months. For women who are not enrolled in a health plan or insurance group, the proportion who should have breast and cervical cancer screening who received appropriate screening services in the past 12 months. Social Environment The social environment is an important domain of the field model and has a role to play in reducing the burden of breast and cervical cancers in a community. Stakeholders in the social environment may provide (1) information to make women aware of the need for and availability of screening activities and (2) supportive services that enable women to use screening services. 1. Availability of breast and cervical cancer public education programs for target populations that include information on breast self-exam, the importance and availability of screening programs, and the value of screening as a tool to protect health and well-being. Public education programs involve all stakeholders. Health care providers and health plans often are a source of education for patients. State and local public health agencies, including environmental health agencies, are involved in public education campaigns at the population level. Local government may provide financial support for public education programs. Educational programs can be offered at the work site, in providers' offices, and at sites used by education organizations and institutions. Populations at risk for the diseases are responsible for receiving the information and subsequently putting it to use. Patient or disease organizations often contribute data and information for inclusion in educational programs. Thus, many segments of the commu-

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Improving Health in the Community: A Role for Performance Monitoring nity share responsibility for this aspect of efforts to improve the health status of women at risk for breast and cervical cancers. Some of these data are tracked by state health departments and health plans. Overall, however, the ability to collect and analyze data for this indicator is somewhat troublesome, and therefore, it may be weak when standing alone. This indicator also may have limited sensitivity to changes in the performance of the system and may be difficult to track given the array of individuals, organizations, and institutions involved in educational programs. Examples of performance indicators that could be used in communities are the following: Proportion of employers, community-based organizations, school parent-teacher associations (PTAs), or faith organizations that provided in the past 12 months health promotion programs in the community about the value of screening, breast self-exam, and the availability of screening programs to prevent breast and cervical cancer among women. For each health plan or insurer and the community as a whole, the proportion of women who have a risk factor for breast or cervical cancer that can be modified through lifestyle changes. 2. Availability of effective patient and family support programs. In response to the American Cancer Society (1989) report Cancer and the Poor, hospitals that serve poor patients began to respond to their special needs (e.g., diagnosis at a later stage of disease, lack of insurance, unfamiliarity with negotiating the health care system) by developing expanded inner-city screening programs and innovative "patient navigator" programs. The patient navigator programs have proven effective as a mechanism for helping patients who receive an abnormal screening result complete a confirming biopsy and treatment in a timely manner (Freeman et al., 1995). Communities may want to duplicate such programs as a way of responding to the special needs of their medically underserved populations. Communities also may want to monitor the number of support programs for women and the utilization rate of such programs. SAMPLE INDICATOR SET A proposed set of performance indicators is listed below. The

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Improving Health in the Community: A Role for Performance Monitoring set was derived by combining similar indicators and selecting those that are relevant at the community level and for which data are available. Some data may be available through the National Breast and Cervical Cancer Early Detection Program, which is now established in at least 35 states and for nine American Indian Tribes (CDC, 1996). The program was created to improve access to screening services for underserved women. 1. Number of cases and rates (incidence and mortality) for breast and cervical cancers, including stage at diagnosis. This information is available, often for the county level, from cancer registries and statistics offices at the state health agency. Examples of performance indicators that could be used in communities are the following: For each MCO and the community as a whole, the number of cases and the incidence of breast and cervical cancer, by stage at diagnosis. For the community as a whole, the number of deaths and the death rate from breast and cervical cancer, by stage at diagnosis. 2. Access to affordable and quality-controlled mammography screening, clinical breast examination, cervical cancer screening (Pap test), and pelvic examination. This indicator requires a new source of data. Measuring access, quality, and barriers will require cooperation among health care providers including health plans, hospitals, and individual clinicians, public health agencies, and the insurance industry. Questions about access are available in the Behavioral Risk Factor Surveillance System (BRFSS), for which surveys are conducted in 50 states, the District of Columbia, and three territories. Examples of performance indicators that could be used by communities include: Proportion and number of facilities offering mammography and Pap tests that meet federal and state regulatory standards. Proportion of health plans or insurers that cover 80 percent or more of the cost of breast and cervical cancer screening. 3. Referral and follow-up rates on results from positive mammography and Pap test screening. This measure requires a survey or a review of medical records.

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Improving Health in the Community: A Role for Performance Monitoring The following is an example of a performance indicator that could be used in communities: For each health plan or insurer, the proportion of enrolled women with positive test results for mammography or Pap testing who received appropriate and timely follow-up care. 4. Rates at which physicians refer women for screening mammograms. This measure requires a survey or a review of medical records. Examples of performance indicators that could be used in communities are the following: For each MCO, family practitioner, internist, and obstetrician-gynecologist, the proportion of women who should have mammography who were actually referred for mammograms in the past 12 months. For each MCO, family practitioner, internist, and obstetrician-gynecologist, the proportion of referred women who received mammography within 30 days of referral. 5. Rates of tobacco use and alcohol consumption among women. This information might be obtained by modifying state BRFSS surveys to produce community-level data. 6. Proportion of sexually active women who use barrier methods of contraception. This measure requires a survey or a review of medical records. 7. Utilization of screening programs by women at risk for breast and cervical cancer. Health plans may be able to rely on HEDIS (Health Plan Employer Data and Information Set) measures for these data (NCQA, 1993, 1996). Data on women without health plan or insurance coverage might be available from the BRFSS. Examples of performance indicators that could be used in communities include the following: For each health plan or insurer, the proportion of enrolled women who should have breast and cervical cancer screening who received appropriate screening services in the past 12 months. For women who are not enrolled in a health plan or insur-

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Improving Health in the Community: A Role for Performance Monitoring ance group, the proportion who should have breast and cervical cancer screening who received appropriate screening services in the past 12 months. 8. Availability of breast and cervical cancer public education programs for target populations that include information on breast self-exam, the importance and availability of screening programs, and the value of screening as a tool for health and well-being. The ability to collect and analyze data for this indicator is somewhat troublesome; therefore, it may be weak when standing alone. This indicator is less sensitive to changes in the performance of the system and somewhat more difficult to track given the array of individuals, organizations, and institutions involved in educational programs. Some of these data are tracked by state health departments and health plans. The following are examples of performance indicators that could be used in communities: Proportion of employers, community-based organizations, school PTAS, or faith organizations that provided in the past 12 months health promotion programs in the community about the value of screening, breast self-exam, and the availability of screening programs to prevent breast and cervical cancer among women. For each health plan or insurer and the community as a whole, the proportion of women who have a risk factor for breast or cervical cancer that can be modified through lifestyle changes. 9. Availability of effective patient and family support programs. Communities may want to monitor the number of support programs for women and the utilization rate of such programs. These data may not be available to communities unless they conduct a survey of provider sites (e.g., managed care organizations, public and private hospitals and clinics). The proposed indicators on breast and cervical cancers address the potentially modifiable risk factors of tobacco use and barrier contraception methods, as well as behaviors that promote early detection (utilization of screening programs). The proposed set also includes measures related to the development and implementation of screening programs (indicators 2–4), utilization of

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Improving Health in the Community: A Role for Performance Monitoring screening programs, and social supports for screening programs. In addition, the direct effects of disease are included. REFERENCES American Cancer Society. 1989. Cancer and the Poor: A Report to the Nation. Atlanta, Ga.: American Cancer Society. American Cancer Society. 1993. Breast and Cervical Cancer Screening: Barriers and Use Among Specific Populations. AMC Cancer Research Center, Literature Review Supplement (Oct. 1991-May 1992) Supplement 2 (June 1992-May 1993). American Cancer Society. 1995. Cancer Facts and Figures 1995. Atlanta, Ga.: American Cancer Society. American Cancer Society. 1996. Cancer Facts and Figures 1996. Atlanta, Ga.: American Cancer Society. CDC (Centers for Disease Control and Prevention). 1996. Update: National Breast and Cervical Cancer Early Detection Program—July 1991-September 1995. Morbidity and Mortality Weekly Report 45:484–487. Colditz, G.A., Willett, W.C., Hunter, D.J., et al. 1993. Family History, Age, and Risk of Breast Cancer: Prospective Data from the Nurses' Health Study. Journal of the American Medical Association 270:338–343. (published correction in Journal of the American Medical Association 1993; 270:1548) Freeman, H.P., Muth, B.J., and Kerner, J.F. 1995. Expanding Access to Cancer Screening and Clinical Follow-up Among the Medically Underserved. Cancer Practice 3(1):19–30. Kerlikowske, K., Grady, D., Rubin, S.M., Sandrock, C., and Ernster, V.L. 1995. Efficacy of Screening Mammography: A Meta-Analysis. Journal of the American Medical Association 273:149–154. Kjaer, S.K., Dahl, C., Engholm, G., Bock, J.E., Lynge, E., and Jensen, O.M. 1992. Case-Control Study of Risk Factors for Cervical Neoplasia in Denmark. II. Role of Sexual Activity, Reproductive Factors, and Venereal Infections. Cancer Causes and Control 3:339–348. Longnecker, M.P., Newcomb, P.A., Mittendorf, R., et al. 1995. Risk of Breast Cancer in Relation to Lifetime Alcohol Consumption . Journal of the National Cancer Institute 87:923–929. NCQA (National Committee for Quality Assurance). 1993. Health Plan Employer Data and Information Set and Users Manual, Version 2.0 (HEDIS 2.0). Washington, D.C.: NCQA. NCQA. 1996. HEDIS 3.0 Draft for Public Comment. Washington, D.C.: NCQA. Newcomb, P.A., Storer, B.E., Longnecker, M.P., et al. 1994. Lactation and a Reduced Risk of Premenopausal Breast Cancer. New England Journal of Medicine 330:81–87. Ries, L.A.G., Miller, B.A., Hankey, B.F., Kosary, C.L., Harras, A., and Edwards, B.K., eds. 1994. SEER Cancer Statistics Review, 1973–1991: Tables and Graphs. NIH Pub. No. 94-2789. Bethesda, Md.: National Cancer Institute. Slattery, M.L., and Kerber, R.A. 1993. A Comprehensive Evaluation of Family History and Breast Cancer Risk: The Utah Population Database. Journal of the American Medical Association 270:1563–1568.

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Improving Health in the Community: A Role for Performance Monitoring Slattery, M.L., Overall, J.C., Jr., Abbott, T.M., French, T.K., Robinson, L.M., and Gardner, J. 1989a. Sexual Activity, Contraception, Genital Infections, and Cervical Cancer: Support for a Sexually Transmitted Disease Hypothesis. American Journal of Epidemiology 130:248–258. Slattery, M.L., Robinson, L.M., Schuman, K.L., et al. 1989b. Cigarette Smoking and Exposure to Passive Smoke Are Risk Factors for Cervical Cancer. Journal of the American Medical Association 261:1593–1598. U.S. Preventive Services Task Force. 1996. Guide to Clinical Preventive Services. 2nd ed. Baltimore: Williams and Wilkens. Washington State Department of Health. 1994. The Washington State Public Health Improvement Plan. Olympia: Washington State Department of Health.

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Improving Health in the Community: A Role for Performance Monitoring TABLE A.1-1 Field Model Mapping for Sample Indicator Set: Breast and Cervical Cancers Field Model Domain Construct Sample Indicators Data Sources Disease, Health Care Impact of disease on the community Number of cases and rates (incidence and mortality) for breast and cervical cancers, including stage at diagnosis: For each MCO and the community as a whole, number of cases and incidence of breast and cervical cancers, by stage at diagnosis. For the community as a whole, number of deaths and death rate from breast and cervical cancers, by stage at diagnosis. Cancer registries, state health department   Screening programs for early detection of disease Access to affordable and quality controlled mammography screening, clinical breast examination, cervical cancer screening (Pap test), and pelvic examination: Proportion and number of facilities offering mammography and Pap tests that meet federal and state regulatory standards. Proportion of health plans or insurers that cover 80 percent or more of the cost of breast and cervical cancer screening. BRFSS, surveys, medical records review   Follow-up services for screening tests Referral and follow-up rates on results from positive mammography and Pap test screening: For each health plan or insurer, proportion of enrolled women with positive test results for mammography or Pap testing who received appropriate and timely follow-up care. Community or provider survey, review of medical records

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Improving Health in the Community: A Role for Performance Monitoring     Rates at which physicians refer women for screening mammograms: For each MCO, family practitioner, internist, and obstetrician-gynecologist, proportion of women who should have mammography who were referred for mammograms in past 12 months For each MCO, family practitioner, internist, and obstetrician-gynecologist, proportion of referred women who received mammography within 30 days of referral. Community or provider survey, review of medical records Behavior, Genetic Endowment Behaviors that reduce risk and promote health Rates of tobacco use and alcohol consumption among women BRFSS     Proportion of sexually active women who use barrier methods of contraception Community survey, review of medical records     Utilization of screening programs by women at risk for breast and cervical cancer: For each health plan or insurer, proportion of enrolled women who should have breast and cervical cancer screening who received appropriate services in the past 12 months. For women who are not enrolled in a health plan or insurance group, proportion who should have breast and cervical cancer screening who received appropriate screening services in the past 12 months. HEDIS or BRFSS

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Improving Health in the Community: A Role for Performance Monitoring Field Model Domain Construct Sample Indicators Data Sources Social Environment Social support that enables activities that reduce risk, detect disease early, and promote health Availability of breast and cervical cancer public education programs for target populations that include information on breast-self exam, importance and availability of screening programs, and value of screening as tool for health and well-being: Proportion of employers, community-based organizations, school PTAs, faith organizations that provided in the past 12 months health promotion programs in the community about the value of screening, breast self-exam and availability of screening programs to prevent breast and cervical cancer among women. For each health plan or insurer and the community as a whole, proportion of women who have a risk factor for breast or cervical cancer that can be modified through lifestyle changes. Community survey, state health departments, health plans     Availability of effective patient and family support programs: Number of support programs. Utilization rate for such programs. Survey needed NOTE: BRFSS, Behavioral Risk Factor Surveillance System; HEDIS, Health Plan Employer Data and Information Set; MCO, managed care organization; PTA, parent-teacher association.