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APPROACH TO DEVELOPMENT OF LEADING HEALTH INDICATOR SETS 17 2 Approach to Development of Leading Health Indicator Sets To undertake the study requested by the U.S. Department of Health and Human Services, the Institute of Medicine appointed a ten-member committee in May 1998. Members were selected for their expertise and experience in multiple disciplines, including public health and health policy, health communications, epidemiology, health care access, health behavior change, and clinical care. The committee met five times between May 1998 and March 1999. The first meeting of the committee included a workshop involving participants from many of the state and local government agencies who had been involved with Healthy People since its inception in 1979. In conjunction with its fourth meeting in January 1999, the committee convened a public hearing to elicit comments and recommendations from the public and private health care communities concerning leading health indicators for Healthy People 2010. In addition, the committee prepared two interim reports which were published in August 1998 and December 1998, respectively and which provided updates on the committee's progress. As a result of its work, the committee developed three candidate sets of leading health indicators for consideration by the U.S. Department of Health and Human Services. This process had three major phases: 1. Development of criteria for suitable indicators, 2. Development of potential conceptual organizing frameworks and indicator categories, and 3. Selection of final candidate indicator sets. The committee completed a number of activities to support the process of reaching consensus on the recommendations for three candidate sets of leading health indicators. Briefly, these activities included: 1. clarification and acceptance of the charge to the committee, 2. review of relevant literature, especially alternative efforts focused on health report cards and indicators considered to be representative of the health and well-being of communities, 3. development of a set(s) of essential criteria against which selection of potential leading health indicators could be assessed, 4. participation in regional meetings convened by the U.S. Department of Health and Human Services to elicit commentary on the selection of leading health indicators for Healthy People 2010, 5. consideration of public comments submitted to the Institute of Medicine and the Department of Health and Human Services concerning leading health indicators, 6. evaluation of 11 conceptual frameworks to guide the development of leading health indicator sets, 7. preparation of two interim reports describing the committee's process and efforts,
APPROACH TO DEVELOPMENT OF LEADING HEALTH INDICATOR SETS 18 8. conduct of a public hearing during July 1998 and January 1999, respectively, to elicit further comments on leading health indicator sets, and 9. final selection of conceptual frameworks and candidate indicator sets. A brief description of each of these activities is provided in the following narrative. CHARGE TO COMMITTEE The committee received its charge from the U.S. Department of Health and Human Services and had several opportunities for periodic review and clarification. The initial charge emphasized that candidate leading health indicator sets should (1) elicit interest and awareness among the general population and diverse population groups, (2) motivate these diverse population groups to undertake activities to improve the status of specific indicators and thereby improving the overall health of the nation, (3) provide ongoing feedback to these populations and the members of the public and private health care communities concerning progress toward achieving sustained improvements in the indicators. In subsequent discussions with staff from the U.S. Department of Health and Human Services, the committee came to understand that the charge also included the development of suggestions for communications and dissemination strategies to promote awareness of the leading health indicators and galvanize actions to improve the status of those indicators. It was also established that clear linkages should be demonstrated between the proposed indicator sets and the full draft of Healthy People 2010, including the two overarching goals, four enabling goals and 26 focus areas. Finally, additional clarification about the committee charge included the recommendation that the candidate indicator sets should contain no more than 10 indicators and that any proposed indicator set should be supported by a conceptual framework around which the specific indicators could be organized. REVIEW OF RELEVANT LITERATURE The committee reviewed and discussed a wide array of previous work related to the concept of leading health indicators and suggested candidate indicators for inclusion in a set of such indicators. Prominent among these was work from the two previous decades of Healthy People and the March 1998 report from the Working Group on Sentinel Health Objectives (U.S. Public Health Service, 1979; U.S. Department of Health and Human Services, 1980, 1986, 1998a; National Center for Health Statistics, 1992, 1994, 1995, 1996, 1997) Included in the Working Group report were five organizing frameworks for leading health indicators, suggestions of specific indicators, and a proposal for nine criteria to be used to guide the committee's final selection of indicators. In addition, the committee gave careful consideration to the Healthy Communities 2000 project in which communities across the nation developed indicators to monitor the health of their populations and provided feedback concerning progress toward achieving indicator objectives (American Public Health Association, 1991). Another source used by the committee was the work of the Coalition for Healthier Cities, and Communities, and particularly the publication of Community Indicators: An Inventory (1997). The committee also familiarized itself with the literature on community health report cards.
APPROACH TO DEVELOPMENT OF LEADING HEALTH INDICATOR SETS 19 DEVELOPMENT OF CRITERIA TO GUIDE SELECTION OF SPECIFIC LEADING HEALTH INDICATORS The development of criteria that could be used to guide the committee in its selection of leading health indicators was a critical aspect of the process of determining which indicators should be considered for inclusion in the candidate pool of leading health indicators. These criteria would provide a means of "filtering" the many candidate indicators considered by the committee by providing a threshold standard that each indicator must meet as a prerequisite for inclusion in the final set of potential leading health indicators. Such criteria would need to be clearly stated and understandable to the public and the public and private health care communities as well as feasible to implement. The committee's selection of criteria followed an iterative process in which multiple sources of information and recommendations were considered. The committee first considered the criteria outlined by the Health and Human Services Working Group on Sentinel Health Objectives (U.S. Department of Health and Human Services, 1998a). The efforts of this Working Group resulted in identification of nine criteria. Indicators that failed to meet one or more of these nonweighted criteria would be excluded from a final set of indicators. The nine criteria are displayed in Table 2.1. After extensive deliberation among the committee, the nine criteria suggested by the Working Group were accepted and five new criteria were added. The five new criteria for inclusion of an indicator were (1) a feasible dissemination plan to ensure that messages would be appropriate and understandable by diverse populations; delivery of these messages would be of sufficient frequency to provoke changes in knowledge and behaviors; and use of messages would rely on multicultural and multidisciplinary strategies for communication, (2) a focus on either primary, secondary, and tertiary prevention issues or environmental and sociocultural determinants of health, (3) a focus on the Healthy People 2010 visions of eliminating health disparities and improving the number and quality of years of healthy life, (4) an ability to promote positive changes in behaviors by encouraging and supporting the general public and diverse population groups to develop interventions that will result in significant and sustained changes in the status of that indicators and (5) a level of credibility with and support from individuals, groups, organizations, health professionals, and others involved in the delivery of health care education and services to the general population and select population groups. The revised list of 14 criteria were published in the second Institute of Medicine interim report released by the committee in December 1998 and public comment on these criteria was solicited through electronic and standard mail communications, participation in five regional meetings convened by the U.S. Department of Health and Human Services, and the January 1999 public hearing convened by the Institute of Medicine. The committee completed a thorough review of all public comments and then engaged in further deliberations to finalize the set of criteria. Based on feedback from these various sources and the reasonable judgments of the committee members, there was consensus that nine criteria, much less fourteen, were too cumbersome and would result in undue restrictions on the final selection of indicators for proposed indicator sets. Members then collaborated to refine the set of criteria that would become prerequisites for inclusion of leading health indicators in a candidate set. The committee reduced the number of criteria to six, which were then stated in easy to understand terms for public and professional use. An indicator was required to fulfill all six criteria before the committee would accept it as a potential indicator for inclusion in a set. The six criteria were of equal importance and weight and are presented in Table 2.2.
APPROACH TO DEVELOPMENT OF LEADING HEALTH INDICATOR SETS 20 Table 2.1 Original Set of Criteria for Leading Health Indicators 1. the general public, opinion leaders, and the health and medical communities can easily interpret and understand the indicators 2. they reflect topics that affect the health profile of the nation's populations in important ways 3. they address problems that are sensitive to change and have a substantial impact on prospects for the health of the nation's population 4. they can be linked to one or more of the full set of Healthy People 2010 objectives; 5. they are generally reliable measures of the state of the nation's health (or that of a select population groups) to ensure that the problem is reflective of a broad scope perspective for a significant proportion of the population; 6. data on the indicators are available from established sources on a regular (at least biennial) basis; 7. they have multilevel trackability to ensure that data can be anticipated at multiple levels (national, state, local, and community) and for diverse select populations; 8. they are reflective of a balance in the selection of targets that does not overemphasize any one group or health condition; and 9. they have utility in directing public policy and operational initiatives. Table 2.2: Final Criteria Guiding Selection of Leading Health Indicators 1. Worth measuringâthe indicators represent an important and salient aspect of the public's health 2. Can be measured for diverse populations - the indicators are valid and reliable for the general population and diverse population groups 3. Understood by people who need to act - people who need to act on their own behalf or that of others should be able to readily comprehend the indicators and what can be done to improve the status of those indicators; 4. Information will galvanize action - the indicators are of such a nature that action can be taken at the national, state, local and community levels by individuals as well as organized groups and public and private agencies; 5. Actions that can lead to improvement are known and feasible - there are proven actions (e.g., personal behaviors, implementation of new policies, etc.) that can alter the course of the indicators when widely applied; and 6. Measurement over time will reflect results of action - if action is taken, tangible results will be seen indicating improvements in various aspects of the nation's health. REGIONAL MEETINGS Institute of Medicine staff and some committee members had the opportunity to attend one or more of five regional meetings convened by the U.S. Department of Health and Human Services during the fall of 1998. These meetings provided opportunities for the Department to receive comments from the public and private health care communities on the proposed content of the full Healthy People 2010 plan as well as the concept of leading health indicators. Many of the comments generated by these meetings focused on clarification of the 26 focus areas, suggestions to add or delete specific objectives within a focus area and suggestions for changes in wording of the objectives and developmental objectives associated with the 26 focus areas. These discussions were also enhanced by comments concerning methods for setting targets for the objectives and ensuring representation of diverse population groups. The comments were of general relevance to the efforts of the Institute of Medicine committee to develop candidate sets of leading health indicators. In addition, a number of comments were directed specifically to the leading health indicator component of Healthy People 2010. These included the comments summarized in Table 2.3. As the
APPROACH TO DEVELOPMENT OF LEADING HEALTH INDICATOR SETS 21 committee continued its work, these suggestions provided guidance for its consideration of conceptual frameworks underlying indicator sets and specific indicators to be included within a set. Table 2.3 Recommendations Concerning Leading Health Indicators 1. Keep the indicators within a set few in number 2. Elicit public awareness and galvanize action among diverse populations 3. Establish link between leading health indicators and objectives in overall Healthy People 2010 plan 4. Involve major stakeholders from the government and the private sectors 5. Consider broader models of health determinants 6. Emphasize elimination of health disparities 7. Emphasize cultural competency of health care providers 8. Suggested indicators might include: socioeconomic status, breastfeeding, access to health care, injury, violence, disability, risk reduction behaviors, diabetes, end stage renal disease, mental health, obesity, substance abuse, arthritis, osteoporosis, asthma, cardiovascular disease, hypertension, infant mortality, low birth weight, health insurance 9. Ensure trackability at state and local levels 10. Monitor patterns of health care utilization 11. Address quality of health care services 12. Include work place interventions 13. Provide instructions for application 14. Provide incentives for partnerships with business, communities, groups, and individuals 15. Increase the number of minority health care providers SELECTION OF CONCEPTUAL FRAMEWORKS FOR INDICATOR SETS The committee began the process of determining candidate leading health indicator sets by reviewing those suggested in the report of the Working Group on Sentinel Health Objectives (U.S. Department of Health and Human Services, 1998a). These included: (1) health status model with 29 indicators; (2) health disparities model with 32 indicators; (3) summary measures/leading contributors approach with 20 indicators; (4) monthly report approach with 12 indicators; and (5) quarterly/semi-annual report approach with 19 indicators. The committee also considered six additional conceptual frameworks including (1) health behavior and access to services model with three primary indicator categories, (2) physical health, mental health, disability, social factors, and ecological factors approach with eight indicators, (3) ecological factors approach with nine indicators, (4) primary, secondary, and tertiary prevention model with four primary indicator categories, (5) personal behavior, occupational issues, indicators of disease, services, and environment approach with five indicator categories, and (6) enabling goals for Healthy People 2010 model with four main indicator categories. Multiple measures were suggested for each of the indicator categories defined by these eleven conceptual frameworks. The committee suggested indicators and measures for each of these frameworks and invited the private and public health care communities to comment on the frameworks and the suggested indicators and measures following their publication in a second interim report from the Institute of Medicine (Institute of Medicine, 1998). Following publication of the second interim report, the committee identified two additional conceptual frameworks to support the development of indicator sets. These were the Health Determinants and Health Outcomes model and the Life Course Determinants model. The total number of conceptual frameworks
APPROACH TO DEVELOPMENT OF LEADING HEALTH INDICATOR SETS 22 considered by the committee thus grew to 13 and ranged from as few as four primary categories per indicator set to as many as 32 specific indicators within a set. INTERIM REPORTS The committee prepared two interim reports which were published in August 1998 and December 1998, respectively. The two provided a historical overview of Healthy People; a discussion of potential criteria that could be used to guide in the selection of indicators; descriptions of possible conceptual frameworks for indicator sets; a discussion of issues related to data collection, analysis and reporting; and consideration of issues relevant to dissemination strategies for the leading health indicator sets. The availability of both reports was announced by the Institute of Medicine and the U.S. Department of Health and Human Services and printed copies of the reports were available from the U.S. Department of Health and Human Services. In addition, both the U.S. Department of Health and Human Services, and the Institute of Medicine published the two reports on their websites, which also encouraged those accessing the reports through the web to submit electronic or paper comments on the reports. These comments were summarized and made available to committee members for their use in all committee deliberations and decision-making. PUBLIC HEARING The committee and project staff held a public hearing on January 27, 1999 in Washington, DC to discuss the activities of the committee and the two interim reports. Approximately 35 individuals representative of a number of federal agencies and other national organizations attended the hearing. A number of individuals offered comments at the meeting, and there was also the opportunity for a dialogue between committee members and hearing participants. Many of the comments reflected those expressed at the regional meetings convened by the U.S. Department of Health and Human Services and at an earlier workshop convened by the Institute of Medicine in September, 1998. In addition, participants in an earlier workshop sponsored by the National Center for Health Statistics reported to the committee during the public hearing. That group recommended that infant mortality, health insurance, immunization, smoking, and preventable deaths be key leading health indicators. They also suggested that cancer screening behaviors, environmental issues, teen pregnancy, cardiovascular disease and physical activity be considered for inclusion in a leading health indicator set. Project staff summarized information from the public hearing for use in further committee deliberations to select the final set of criteria guiding the process of selecting specific indicators, conceptual frameworks, and candidate indicator sets and measures to be recommended to the U.S. Department of Health and Human Services. SELECTION OF CANDIDATE INDICATOR SETS The committee proposed three sets of leading health indicators for consideration by the U.S. Department of Health and Human Services. These include: (1) Health Determinants and Health Outcomes Set, (2) Life Course Determinants Set, (3) Prevention-Oriented Set. The committee selected conceptual frameworks for each of the three proposed sets and identified issues relevant to the design, implementation, and evaluation
APPROACH TO DEVELOPMENT OF LEADING HEALTH INDICATOR SETS 23 of the three sets. Table 2.4 provides a comparative overview of the 3 proposed sets and their specific indicators. Table 2.4 Proposed Leading Health Indicator Sets Health Determinants and Health Outcomes Life Course Determinants Prevention Physical environment Substance abuse Poverty Poverty Poverty Tobacco use High school graduation Physical activity Childhood immunization Tobacco use Health care access Cancer screening Weight Cognitive development Hypertension screening Physical activity Violence Diabetic eye exam Health insurance Disability Health care access Cancer detection Tobacco use Disability Preventable deaths Low birth weight Preventable deaths Disability NOTE: Key: Bold = Unique to the set, Italic = Common to two sets, Underline = Common to three sets
APPROACH TO DEVELOPMENT OF LEADING HEALTH INDICATOR SETS 24
