Perinatal Periods of Risk: A Community Approach for Using Data
to Improve Women and Infants’ Health
Magda G. Peck • Willia...
has been hampered in part by insufficient community
engagement, limitations of available data, and complexity
of the proble...
enhance local perinatal assessment and planning in three
US cities [18, 19].
Between 2000 and 2002, learning teams from 14...
mortality and the promotion of women’s and infants’
health. Stage 1 begins when diverse stakeholders are
brought together ...
Analytic Preparation
Assuring the completeness and quality of data to be used in
PPOR analysis is essential for generating...
mortality rates are the differences between the low
mortality rates in the reference group and higher rates in
the study p...
strengthen an existing one, such as the federal Healthy
Start program’s Local Action Plans. Current and/or plan-
ned inter...
periods of risk. Phase 1 PPOR mapping can be done
annually to track trends such as reductions in mortality
rates, disparit...
PPOR’s Strengths and Benefits
The PPOR approach’s sequential stages chart a course for
moving from information to intervent...
Governmental public health agencies are charged with
protecting, preserving, and promoting the public’s health
20. Thompson, B., Peck, M., & Brandert, K. (2008). Integrating
preconception health into public health practice: A tale of...
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  1. 1. Perinatal Periods of Risk: A Community Approach for Using Data to Improve Women and Infants’ Health Magda G. Peck • William M. Sappenfield • Jennifer Skala Published online: 3 July 2010 Ó US Government 2010 Abstract This paper provides an overview of the origins, purpose, and methods of the Perinatal Periods of Risk (PPOR) approach to community-based planning for action to improve maternal and infant health outcomes. PPOR includes a new analytic framework that enables urban communities to better understand and address fetal and infant mortality. This article serves as the core reference for accompanying specific PPOR methods and practice articles. PPOR is based on core principles of full commu- nity engagement and equity and follows a six stage com- munity-based planning process. In Stage 1, communities are mobilized and engaged, related planning efforts aligned, and community and analytic readiness assessed. In Stage 2, feto-infant mortality is mapped, excess mortality is estimated, likely causes of feto-infant mortality are deter- mined, and appropriate actions are suggested. Stage 3 produces action plans for targeted prevention strategies. Stages 4 and 5 include implementation, monitoring, and evaluation. Stage 6 fosters political will to sustain efforts. PPOR can be used in local maternal child health (MCH) practice for improving perinatal outcomes. MCH programs can use PPOR to integrate health assessments, initiate planning, identify significant gaps, target more in-depth inquiry, and suggest clear interventions for lowering feto- infant mortality. PPOR enables greater cooperation in improving MCH through more effective data use, strengthened data capacity, and greater shared under- standing of complex infant mortality issues. PPOR offers local health departments and their community partners a comprehensive approach to address the health of women and infants in their jurisdictions. Keywords Perinatal periods of risk (PPOR) Á Community health planning Á Feto-infant mortality Á Preconception health Á Health disparities Purpose Background Urban communities in the United States, compared to the nation as a whole, experience a disproportionate burden of adverse health risks, outcomes, and disparities [1, 2]. Specifically, urban communities suffer higher rates of maternal mortality [3], infant mortality, and low birth- weight [4–6]. Urban public health agencies are charged with transforming information into strategic actions to address urban problems [7, 8]. To carry out core public health functions, maternal and child health programs need health assessment and planning approaches that help identify significant gaps, target more in-depth inquiry, and suggest interventions [9]. Moving from data and analysis to measurably improving perinatal outcomes in urban areas The findings and conclusions in this article are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention. M. G. Peck (&) CityMatCH and the Department of Pediatrics, University of Nebraska Medical Center, Nebraska Medical Center, Omaha, NE 68198-2175, USA e-mail: W. M. Sappenfield Division of Reproductive Health, Centers for Disease Control and Prevention, Atlanta, GA, USA J. Skala Nebraska Children and Families Foundation (Formerly with the CityMatCH and the Department of Pediatrics, University of Nebraska Medical Center), Omaha, NE, USA 123 Matern Child Health J (2010) 14:864–874 DOI 10.1007/s10995-010-0626-3
  2. 2. has been hampered in part by insufficient community engagement, limitations of available data, and complexity of the problems being addressed. It can be difficult for some community partners to understand complex public health problems like infant mortality. Traditional data analyses can yield pages of arcane technical tables and graphs displaying perinatal mortality and morbidity by a long series of risk factors [10]. Fetal Infant Mortality Review (FIMR) and other case review approaches provide additional information to better understand health care gaps and failures [11]. However, which strategic actions best follow from the data may be unclear to the diverse partners who have come together to improve perinatal services and systems. Public health approaches to reducing infant mortality historically have not involved community-based partners fully in the process of data collection, analysis, interpre- tation and dissemination. Although community-based par- ticipatory research is becoming more common [12], in many urban communities specialists from public health agencies and/or academic institutions customarily have defined the research agenda, and assumed primary responsibility for data interpretation. Given the intensity of the urban political environment, approaches that do not fully engage a broad range of community partners may not generate sufficient political will for evidence-based solutions. Urban communities’ efforts to address perinatal out- comes are hindered by having access only to the standard surveillance statistics such as rates of infant mortality and low birthweight. Analysis of linked birth and infant death datasets permits the use of information from the birth certificate to construct more detailed analyses of infant mortality patterns. Birth certificates can often be linked to other local data to provide even more information [13]. Fetal deaths can be a source of valuable information. However, most states do not routinely furnish their local- ities with electronic vital records data files, and many localities have not had the capacity to utilize them. Fresh approaches are needed in urban areas to overcome the inherent complexity of infant mortality and engage and mobilize diverse stakeholders to engineer data-driven improvements in perinatal services and systems. In this paper, we describe the history, purpose, and methods of a comprehensive community approach for using data to improve women and infants’ health, Perinatal Periods of Risk (PPOR). We outline the six stages of the PPOR approach, describe opportunities for its use at the local level, and explore potential contributions of PPOR to maternal and child health (MCH) practice. We also provide links to Internet-based tools developed to facilitate imple- mentation of PPOR in the field. Accompanying articles detail PPOR analytic methods and provide examples of their use and local impact. Origins of PPOR CityMatCH, a national public health organization dedi- cated to improving the health and well-being of urban women, children and families [14], convened a national working group of local and state MCH practitioners and public health scientists in 1997 to find ways to improve local MCH data and assessment capacity. The expert working group reviewed a range of assessment methods and tools, including the Periods of Risk (POR) approach developed more than a decade earlier by Dr. Brian McCarthy and colleagues at the World Health Organization (WHO) Collaborating Center in Reproductive Health at the Centers for Disease Control and Prevention (CDC) [15, 16]. McCarthy’s approach included a framework for peri- natal surveillance and newborn health information man- agement designed to better inform health programs and policies in developing countries. The original POR analytic framework included both fetal and infant deaths, and it encouraged ‘‘thinking in two dimensions’’ by classifying fetal and infant deaths according to both birthweight and age of death. McCarthy’s approach also identified ‘‘opportunity gaps,’’ differences between actual and expected mortality rates that could be aligned with pre- vention strategies. The POR approach had been used pri- marily in developing countries, where its application to health planning and policy development at the national and regional levels was promising [9, 16, 17]. The CityMatCH working group concluded that, with modification, McCarthy’s two dimensional framework, concept of opportunity gap, and corresponding categori- zation of prevention strategies, held strong potential for use by US urban health departments and their community partners to better address local challenges of fetal and infant mortality. Scientific and funding support from CDC (1998–2002), plus additional support from the March of Dimes, enabled CityMatCH to apply POR methods to US fetal and infant birth and death data. Using US national data from the years 1995–1997, CityMatCH combined similar periods of risk, developed a national reference group for calculating excess deaths, verified that most large cities would have enough deaths for analysis, and assessed data quality. This process led to the development of a matrix reduced to four periods of risk based on birthweight and age at death parameters for use in US urban commu- nities. The overall framework was renamed Perinatal Periods of Risk (PPOR) and the modified periods of risk were labeled to suggest primary prevention areas (Fig. 3.) CityMatCH then explored how periods of risk could Matern Child Health J (2010) 14:864–874 865 123
  3. 3. enhance local perinatal assessment and planning in three US cities [18, 19]. Between 2000 and 2002, learning teams from 14 US pilot cities field tested PPOR in their communities as part of a ‘‘practice collaborative.’’ The urban practice collaborative model uses team-based, facilitated action learning within and across cities to strengthen capacity, foster innovation and promote strategic problem-solving [20]. The 14 teams worked together with CityMatCH to transform PPOR from a mainly analytic tool into a comprehensive community planning approach which emphasizes community-driven translation of data into action. Problems with acquiring vital records data from their states and poor data quality emerged as challenges in all pilot cities, leading to the development of specific recommendations and a checklist for analytic readiness. Lessons learned within and across participating communities led to further refinements in the PPOR approach to maximize local impact. In a second stage of initial implementation (2002–2004) supported in part by CDC and the Federal Healthy Start Program (MCHB/HRSA), CityMatCH developed an array of tools to help communities implement the approach, conducted training workshops to advance the appropriate use of PPOR, worked with other national organizations to disseminate widely the findings of the pilot cities, fostered the integration of PPOR and Healthy Start, and provided technical assistance for broader adoption of PPOR by sev- eral states. With state March of Dimes funding in 2003– 2004, the urban practice collaborative model was used in Florida to expand capacity and extend the use of PPOR to all of its seven metropolitan areas. In a third stage of initial implementation (2005–2008) CityMatCH advanced the integration of PPOR with broader MCH practice at the state and local levels, continued to provide training and technical assistance, and prepared professional publications. Description Overview of the PPOR Approach The PPOR approach has six stages (Table 1) that generally follow the public health planning cycle: problem-oriented, community-based needs assessment; data-driven strategic planning; targeted program and policy development and implementation; and monitoring and evaluation (e.g. National Association of County and City Health Official’s Mobilizing for Action through Planning and Partnerships ‘‘MAPP’’ [21]). The PPOR approach augments the MCH planning cycle outlined by Peoples-Sheps et al. [22] by adding two components: (1) readiness at the beginning of the cycle to assure early community engagement and partici- pation, and (2) investment at the end of the cycle to foster sustainable support and political will for systems change (Fig. 1). In communities with few initiatives underway to address infant mortality and other adverse perinatal out- comes, PPOR’s comprehensive approach may be adopted in full. Alternatively,PPOR may become integratedwith recent or ongoing MCH assessment and strategic planning activi- ties for women and infants’ health. The PPOR approach assumes a continuous, iterative interactive process between a community and its data at all stages. With sufficient com- munity and analytic readiness and resources, a community can progress through Stages 1–6 in one to 2 years. Stage 1: Readiness Community Engagement, Mobilization and Alignment An engaged, cohesive, community-based partnership is essential to support the prevention of fetal and infant Table 1 Six stages of the perinatal periods of risk approach Stage 1: Readiness Community engagement, mobilization, and alignment Community readiness Analytic readiness Stage 2: Data and assessment Analytic preparation Phase 1 PPOR analysis—Feto-infant mortality map and gaps Phase 2 PPOR analyses—further epidemiologic investigations Stage 3: Strategy and planning Strategic action plans Targeted prevention Stage 4: Implementation Communication and coordination Re-assessment of community readiness Stage 5: Monitoring and evaluation Monitor local indicators Assess impact of approach Stage 6: Investment Unity of stakeholder efforts Political will achievement Fig. 1 Expanded MCH planning cycle with corresponding stages of PPOR 866 Matern Child Health J (2010) 14:864–874 123
  4. 4. mortality and the promotion of women’s and infants’ health. Stage 1 begins when diverse stakeholders are brought together for comprehensive perinatal health plan- ning. Community partners identify and assess problems, prioritize prevention efforts, develop effective strategies, implement strategic actions, evaluate prevention efforts, and champion change. In localities where a functioning community-based MCH group does not exist, public health leaders may need to mobilize a new entity. PPOR also can be a catalyst for renewing, strengthening and/or augment- ing an existing group (e.g. an Infant Mortality Task Force, Healthy Start Consortium, Fetal Infant Mortality Review Team) which can become the strategic base from which the PPOR process is mounted. In that case, alignment of vision, leadership, and resources is critical to avoid dupli- cation of effort and maximize political will. Community Readiness We recommend that the community stakeholder group planning to utilize the PPOR approach and assume accountability for its results assess its readiness for carry- ing out the full six stage approach. This assessment of shared vision, current capacity, and expected impact is done collectively at the outset using a tool adapted for PPOR, the Community Readiness Tent (Fig. 2). The Tent helps planning groups to reach clarity and consensus on core dimensions of organizational change: their reasoning for doing PPOR, results they expect to achieve from its use, the roles of key participants, risks and rewards of partici- pation, and resources needed to carry out the approach fully. (The Community Readiness Toolkit is available at [23]). This process should be repeated about every 6–9 months during subsequent stages, and whenever a community experiences sustained barriers. Periodic assessment enables the community to understand collectively the factors promoting or impeding progress and to translate that understanding into more effective collaboration. Analytic Readiness A community also must be ready, willing and able to gen- erate and use PPOR data for decision-making. A parallel assessment of readiness to carry out all analytic components of PPOR is essential to assure local capacity and identify potential barriers. MCH leaders and their community part- ners should explore together several key questions (Fig. 2), including: Is there adequately trained staff with dedicated time available to prepare the data, complete the analyses and interpret results? Are there diverse stakeholders willing to work closely with the analytic team to provide clinical, program, and communication expertise, and community perspectives? Assuring analytic readiness up front will increase the likelihood of success. When significant barriers are identified, public health agencies and their partners can use their shared understanding of limitations to leverage solutions and work together to strengthen the community’s MCH data infrastructure. Stage 2: Data and Assessment Stage 2 PPOR analytic methods have three major parts that include 11 defined steps. In the first part—Analytic Prep- aration—data needed for conducting PPOR analyses are acquired, prepared and assessed. The second and third parts correspond to PPOR Phases 1 and 2, which together transform the complexity of feto-infant mortality into clearer, more specific problems amenable to interventions. A complete explanation of Stage 2 PPOR analytic methods can be found in two accompanying articles [18, 19]. A general overview follows. Strong leadership agreement & support Adequately trained analytic staff Adequately trained communication staff Analysis team including program staff Sufficient staff hours Data access/quality Minimum number of events Community Readiness Tent Analytic Readiness Checklist Fig. 2 PPOR Readiness Tools Matern Child Health J (2010) 14:864–874 867 123
  5. 5. Analytic Preparation Assuring the completeness and quality of data to be used in PPOR analysis is essential for generating accurate and meaningful community results. Stage 2 PPOR begins with obtaining and preparing the three electronic vital records files needed to conduct PPOR analyses: fetal death certif- icate, live birth certificate, and linked infant death certifi- cate files. The infant deaths must be linked (individually matched) to the birth certificate so that required data ele- ments such as birthweight are available. Obtaining these files can take considerable time since most states do not routinely make them available to localities. Once these files are acquired, they are assessed for comparability with published totals, and for missing data, missing values, and unmatched records. The need to improve the quality of vital records reports is a common PPOR finding. Because of reporting inconsistencies for extremely premature births, PPOR analyses are restricted to fetal deaths with gesta- tional age of 24 weeks or more and birthweight of 500 g or more, and infant deaths of 500 g or more [18]. After data files are prepared, it must be determined whether there are sufficient feto-infant deaths in the population and sub populations of interest to conduct statistically reliable PPOR analyses; we recommend that a community have a minimum of 60 feto-infant deaths within a 5 year period, to undertake PPOR Analysis. The PPOR community stake- holder group identified in Stage 1 should be informed of progress, and engaged in overcoming identified barriers. Phase 1 PPOR Analysis: Feto-Infant Mortality Map and Gaps Phase 1 analysis starts with defining the community or study population, in collaboration with the PPOR com- munity stakeholder group. Next, the overall problem of feto-infant mortality is partitioned into its component periods of risk, and opportunity gaps are identified. PPOR Feto-Infant Mortality Map In Phase 1 Analysis, the fetal and infant deaths are sorted and displayed using the PPOR framework which defines four ‘‘periods of risk’’ by age at death and weight at birth (see Fig. 3). Three categories for age at death are used: fetal death ([24 weeks gestation), neonatal death (birth to less than 28 days) and postneonatal death (28–364 days) Two birthweight cate- gories are used: very low birthweight (500–1,499 g) and higher birthweight (C1,500 g). To ‘‘map’’ feto-infant mortality, the four periods of risk have been color-coded for consistency across communities and labeled by primary prevention area as follows: Maternal Health/Prematurity (blue), Maternal Care (pink), Newborn Care (yellow), and Infant Health (green). Each period of risk corresponds to a set of potential prevention strategies to reduce the likeli- hood of fetal or infant death (Fig. 4). Once deaths are mapped, the overall and period-specific feto-infant mor- tality rates are calculated and can be displayed in the same map format. Mortality rates in the four periods sum to the overall mortality rate. Feto-infant mortality numbers and rates are mapped by different time periods to identify trends. Additional mapping by subpopulations (e.g. geo- graphic area, race, ethnicity, mother’s age) will reveal differences in underlying risks and disparities in perinatal outcomes. PPOR Gaps Analysis PPOR methods are grounded in the core public health value of social justice [24]. In PPOR’s Phase 1 analytic methods, a central question of equity is asked: ‘‘If some mothers and babies in our community or elsewhere in the nation already are achieving optimal birth outcomes in terms of lower feto-infant mortality, why should not all mothers and babies experience similar levels of lower mortality?’’ The underlying assumption is if one population can experience low feto-infant mortality rates, then other populations should be able to attain the same low rates. In this step of PPOR Phase 1 analysis, feto-infant mor- tality rates in the study population are compared overall and in each period of risk with corresponding rates in a reference group that has near-optimal outcomes. Excess 500-1499 g 1500+ g Fetal Death Neonatal Post- neonatal Maternal Health/ Prematurity Maternal Care Newborn Care Infant Health Birthweight Age at death Fig. 3 Perinatal periods of risk fetal-infant mortality map Maternal Health/ Prematurity Preconception Health Health Behaviors Perinatal Care Maternal Care Prenatal Care High Risk Referral Obstetric Care Newborn Care Perinatal Management Neonatal Care Pediatric Surgery Infant Health Safe Sleep Breast Feeding Injury Prevention Fig. 4 From perinatal periods of risk to potential actions 868 Matern Child Health J (2010) 14:864–874 123
  6. 6. mortality rates are the differences between the low mortality rates in the reference group and higher rates in the study population, and are found by subtraction. These differences are termed opportunity gaps because they measure the potential for mortality reduction and identify populations and periods of risk most likely to benefit from prevention efforts. Reference groups for the PPOR gaps analysis should be chosen strategically by the community for use in the planning process. Having local involvement in reference group selection empowers the community to set and use its own benchmarks. Communities choosing an internal ref- erence group from within their local population benchmark themselves against the best possible outcomes already achieved within their community. Communities also may choose to compare their observed rates with an external reference group that has near optimal rates. A national reference group based upon available data from the National Center for Health Statistics is available from CityMatCH (see [11, 25]. The peri- od(s) of risk identified in Phase 1 as having the largest opportunity gaps are targeted for further investigation in Phase 2. Phase 2 Analyses: Further Epidemiologic Investigations Phase 2 PPOR analyses help communities understand which causes and factors contribute the most to gaps and disparities revealed in Phase 1. Investigations of the gaps may include further community health assessments, Fetal and Infant Mortality Reviews, and/or further epidemiologic studies. Phase 2 Analytic methods for further epidemiologic studies are described in an accompanying article [19]. Guidelines (available at php) outline ways to examine causes of death in the Infant Health period of risk, to differentiate between birthweight distribution and birthweight-specific mortality in the Maternal Health/Prematurity period of risk (using Kitagawa [26] analyses), and to estimate the prevalence and impact of risk and preventive factors by type of mechanism. Stakeholders consider Phase 2 PPOR analytic findings and other qualitative and quantitative information to achieve greater understanding of MCH issues in the community. In particular, examining FIMR [12, 27] case review results by period of risk can increase the informative power of this qualitative data by providing a quantitative, population- based context. FIMR can help the PPOR stakeholders group examine their health system’s delivery, capacity and pre- vention efforts by providing insight into events and cir- cumstances that have led to deaths in the community but are not recorded on birth or death certificates. A synthetic example drawn from the combined experi- ences of several PPOR Practice Collaborative cities illustrates how Stage 2 steps combine PPOR analytic methods. The local perinatal coalition for an urban com- munity of about 500,000 people agrees that the PPOR study population is defined as all of the county’s resident fetal and infant deaths meeting birthweight and gestational age restrictions described above. In Phase 1 analysis, the Maternal Health and Prematurity (MH/P) period of risk is shown to have the highest numbers and rates of feto-infant deaths overall, and within both the black and white popu- lations this pattern has remained constant for almost a decade. The widest observed racial disparity is the black- white gap in the Infant Health period of risk; the post- neonatal mortality rate among infants born at over 1,500 g had dropped steadily during the decade for white infants while the corresponding black rate had declined only slightly. Using the national external reference group, excess fetal and infant mortality rates are calculated overall and in each period of risk. The greatest estimated excess mortality is in the MH/P period of risk, especially among blacks. In Phase 2 Analyses, the coalition uses both further epidemiologic studies and case reviews to examine the Maternal Health/Prematurity and Infant Health periods of risk. Following MH/P guidelines, Kitagawa analysis shows that over 90% of the estimated excess feto-infant deaths in that period were attributable to birthweight distribution, not birthweight-specific mortality. Concerned about prematu- rity, the community coalition decides to tailor its FIMR case selection process to oversample very low birthweight fetal and infant deaths. Key FIMR findings include a pat- tern of limited utilization of family planning before or between pregnancies, little or no preconception health care, and many unintended pregnancies. Following Infant Health Phase 2 guidelines, analysis of death certificate data shows higher than expected numbers of sudden unexplained infant deaths (SUID) among black infants. Published studies indicating that unsafe infant sleep practices can increase SUID rates, combined with media reports of a cluster of co-sleeping related deaths of black infants in the community, indicate that unsafe sleep practices might account for much of the observed disparity. Follow up planning for action is driven by these PPOR findings. Stage 3: Strategy and Planning: Strategic Action Plans In Stage 3, Phase 1 and Phase 2 analytic results, combined with other information such as case review results, com- munity needs assessments, and published research, are used by the community stakeholder group to determine the most strategic combined response. Together these data serve to inform and drive the coalition’s development of a detailed action plan for perinatal health. They also may serve to Matern Child Health J (2010) 14:864–874 869 123
  7. 7. strengthen an existing one, such as the federal Healthy Start program’s Local Action Plans. Current and/or plan- ned interventions may increase in priority or be expanded to address the factors revealed in Stage 2 as important contributors to excess mortality. New programs and poli- cies may be developed or adapted based on PPOR findings. The action plan should indicate who within the coalition has lead responsibility for implementation and evaluation of planned strategies. It should reflect community con- sensus on the necessary human and fiscal resources, key activities and milestones, and expected community participation. Targeted Prevention The range of possible interventions to address the many antecedents of feto-infant mortality is broad. At the same time, resources to address the problem are limited. There- fore, targeting prevention efforts based on data is key. PPOR analyses identify underlying reasons for excess deaths in specific periods of risk, often for specific sub- populations. This allows a community to prioritize evi- dence-based actions to address the specific drivers of feto- infant mortality most likely to affect their community (See Fig. 3). For each prevention strategy to be carried out, an accompanying evaluation plan will allow questions of utility, effectiveness and impact to be answered. Continuing with the example described in Stage 2, Phase 1 and 2 PPOR results highlighted the need to shift attention to preconception health—women’s health before and between pregnancies. They also underscored the need to better understand SIDS and cultural patterns of infant sleep practices, including co-sleeping in specific racial and ethnic communities. As a result of integrated data and planning, the county’s MCH Action Plan and the Healthy Start project’s Local Action Plan are aligned. Both are expanded to address preconception health, expand access to family planning, and increase education and awareness among providers and consumers about the importance of every individual having a reproductive health plan. The coordinated action plans also delineate a timetable for implementation and agreed upon milestones to monitor progress. Public and private payers engaged in the stake- holder group agree to expand coverage to include one preconception care visit in accordance with professional recommendations [13, 28, 29]. A demonstration project targeting the most affected neighborhoods is proposed to assure interconception care—including family planning— for all high risk resident women, with special focus on those with previous poor birth outcomes. In addition, the Healthy Start Project in partnership with the local Minis- terial Alliance agrees to take the lead in a culturally sen- sitive safe-sleep campaign designed to reach populations at risk. PPOR has set the stage for data-driven, focused intervention. Stage 4: Implementation In Stage 4, the community stakeholder group fosters movement from data-driven planning to implementation of planned actions. MCH assessment and planning processes often can become ends in themselves, rather than means for launching and sustaining interventions. Stakeholder understanding of PPOR findings from Stage 2 and broad support for the plan of action crafted together in Stage 3 can fuel momentum and support for implementing peri- natal health strategies and services. Communication and Coordination It is important to communicate and coordinate across multiple efforts so that enhanced and/or new prevention efforts stimulated by PPOR findings become integrated into the broader maternal and child health landscape. Effective public health leadership is needed to foster collaboration between public sector agencies and community partners in the implementation of targeted prevention strategies. Re-Assessment of Community Readiness (described in Stage 1) prior to implementation in Stage 4 may provide essential insights about current resources, roles and per- ceived risk at this critical transition point in the PPOR pro- cess. A fresh assessment may indicate the need to prioritize further among the planned steps of implementation to align better with actual resources and to seize opportunities. Stage 5: Monitoring and Evaluation In Stage 5, the activities agreed upon in Stage 3 and implemented in Stage 4 are monitored, and answers to key evaluation questions generated in Stage 3 are sought. Evaluation of PPOR has several possible levels. Each prevention strategy implemented must be evaluated to determine how well it achieved its stated goals and objectives using standard methods that correspond with evidence-based approaches, such as CDC’s evaluation framework [30]. The overall action plan also may be evaluated to ascertain the interaction among multiple strategies, the relative contribution of each intervention to achieving improved perinatal outcomes, and the impact of combined prevention strategies on reducing feto-infant mortality and narrowing gaps. Monitor Local Indicators To monitor local indicators, the PPOR map (Fig. 3) can be used to track feto-infant mortality overall and within 870 Matern Child Health J (2010) 14:864–874 123
  8. 8. periods of risk. Phase 1 PPOR mapping can be done annually to track trends such as reductions in mortality rates, disparities or gaps. It may take several years to show significant changes in feto-infant mortality. Repeating selected Phase 2 PPOR analyses such as disparities in prevalence of key risk and preventive factors can allow stakeholders and program staff to assess the impact of community-wide interventions. Assess Impact of the PPOR Approach A parallel line of inquiry is about the impact of imple- menting the PPOR approach on MCH practice in the community. The more PPOR is integrated into larger MCH programs, planning and implementation, the more difficult it can be to attribute the specific contribution of the PPOR approach on targeted MCH outcomes. However, docu- menting stakeholder participation in and satisfaction with the collaborative process, their knowledge and under- standing of PPOR and feto-infant mortality, and changes in MCH data infrastructure and capacity will yield useful information for improving MCH practice. In addition, periodic community readiness assessments provide quali- tative information about community perceptions of the conditions needed for systems change. Stage 6: Investment Effective community leadership, shared vision, and broad- based ownership of solutions drive renewed mobilization and investment. After the initial cycle of data, planning, implementation and early evaluation, special attention must be given to unifying stakeholders’ efforts to chart a common course and assuring their willingness to invest in the long term for better birth outcomes. Unity of Stakeholder Efforts Following more than a year of continuous work, it is not uncommon that fatigue, turnover in participants or leaders, and/or competing external forces begin to undermine the cohesion of the stakeholder group. Cohesive MCH lead- ership is essential at this critical juncture to champion the shared vision for preventing death and disabilities among the most vulnerable, and to foster unity of commitment among diverse stakeholders to keep working together toward common goals. It also is important to reassess the relationship between PPOR and other related community efforts. Have they truly become integrated and synergistic, or are they fragmented and siloed? How well do PPOR strategies align with the National March of Dimes Pre- maturity Campaign or the emerging emphasis on precon- ception health? Using the community readiness tool with all individuals who were ever involved as stakeholders (i.e., not only those who remained present and active) may yield insights about changing dynamics that can help the coalition adapt. Political Will Achievement Public health responses to complex conditions like feto- infant mortality often fall short, fade out, or fail. One common pitfall is reducing comprehensive, data-driven plans to a series of limited projects with terminal funding. Another is the premature interruption or cessation of promising or effective interventions which need several years, not months, to yield significant impact on health outcomes. Political will for longer-term investment is necessary for sustainable systems change [31]. Shorter term positive results of using the PPOR approach— improved community collaboration, strengthened MCH data infrastructure, and increased public health capacity, increasing awareness of safe sleep or preconception health—can be leveraged to sustain broader efforts until measurable health outcomes can be demonstrated. Another investment strategy is to convene periodically a summit on women and infant’s health to increase public awareness of the issues, promote accountability for PPOR among its stakeholders, celebrate successes, and rekindle a sense of urgency to prevent feto-infant mortality and prematurity. Assessment Infant mortality rates in the US are no longer decreasing appreciably [32, 33]. Persistent racial and ethnic dispar- ities in perinatal outcomes underscore that further improvement is necessary [34, 35]. Newer Life Course approaches to maternal and child health underscore the complexity of infant mortality as part of a larger, mul- tifaceted continuum [34]. Perinatal Periods of Risk offers a comprehensive community-based approach for trans- lating data into strategic actions to improve women and infants’ health. Since its introduction to US urban com- munities a decade ago, the PPOR approach has become an important component of local MCH practice for improving MCH outcomes. CityMatCH has worked directly with over 100 urban public health agencies and most Healthy Start sites to build their readiness and capacity to utilize the PPOR approach and integrate it into local MCH practice. Some urban communities have reported their experiences and successes in using the approach [36, 37]. In addition, a growing number of states are using PPOR as part of statewide surveillance and perinatal systems planning. Matern Child Health J (2010) 14:864–874 871 123
  9. 9. PPOR’s Strengths and Benefits The PPOR approach’s sequential stages chart a course for moving from information to intervention. Placing readiness as the first stage positions communities to know up front their collective strengths and limitations for taking on this comprehensive approach and to shore up their capacity to make it work. The process of assuring analytic readiness can identify opportunities to strengthen existing perinatal data, systems and partnerships. Community mobilization tools, such as the community readiness tent, serve to improve partners’ understanding of the current situation and sustain their engagement. PPOR also may increase the likelihood of greater and broader based investment at the end of the MCH planning cycle to generate the political will for sustainable systems change. The PPOR framework of feto-infant mortality, displayed as a standard four color map, makes the data and the underlying complex concepts of feto-infant mortality more accessible. A broad range of community partners, from consumers to researchers, can grasp in common language the leading preconception and perinatal issues in their community. PPOR’s analytic methods challenge tradition in several ways, not the least of which is the continuous involvement of diverse community members. Phase 1 analytic methods require local stakeholders to decide which reference groups are used to estimate the ‘‘oppor- tunity gap’’ of excess feto-infant mortality. This means answering together the questions: Which mothers and infants already experience the lowest rates of death? And why cannot all of our mothers and infants have outcomes as good as those mothers and infants already experience? Grounded in the public health value of social justice, PPOR empowers local communities to reframe perinatal health disparities in terms of equity. Convening partners and fostering collaboration are essential MCH functions at the local level [9]. Effective leadership for PPOR may enhance the credibility of urban MCH leaders and their public health organizations. Suc- cessful community-based collaborations around PPOR can inspire other collaborative projects to advance the health and well-being of women and children in urban areas. Utilization of the PPOR approach also can have the secondary benefit of improving MCH data and assessment capacity. More communities are initiating, re-utilizing or targeting Fetal and Infant Mortality Reviews following Phase 1 PPOR analysis to obtain qualitative data for community-based decision-making. Others have leveraged the promise and practice of PPOR to strengthen their data infrastructure with new staff and computing support plus local MCH epidemiologists. Local health department demand for linked birth–death vital statistics in some of the pilot cities stimulated their state public health agencies to increase data capacity and strengthened state-local partnerships for better data access and quality. PPOR’s Limitations Implementation of PPOR in urban communities has dis- tinct challenges. The PPOR approach requires sufficient community readiness, capacity and multi-institutional support for effective collaboration to address infant mor- tality. Community partners and stakeholders must be willing to learn about PPOR together and to integrate it into ongoing MCH improvement activities. Reinvigorating an existing stakeholders group or creating a new collab- orative requires dedicated time and resources, and politi- cal acumen to navigate the local environment. Financially challenging times and an environment of multiple com- peting priorities make it difficult to muster the commit- ment needed to see the process through. Frequent leadership and/or organizational transitions make it hard to create a sustainable environment in which PPOR can succeed. PPOR is more than data analysis. It is designed as a comprehensive approach to be integrated with larger MCH practice in which data analysis is one part of an engaged community-based planning process. Though the colorful Phase 1 feto-infant mortality can serve as a stand alone surveillance tool, the map and gap analysis is insufficient for guiding community action. Phase 2 analyses are essential for understanding the underlying reasons and conditions which drive feto-infant mortality. Community involvement is essential for implementing and sustaining strategic responses. PPOR analysis requires at least 60 feto-infant deaths, and this limits its relevance and impact in local MCH practice outside urban areas. Communities with an insuf- ficient number of events should not undertake PPOR analysis, although the PPOR conceptual framework and some specific tools developed for community engagement and mobilization may still be of use to smaller cities and counties. Even with the minimum number of deaths, a complete Phase 2 analysis may not be possible, in which case a community will need to rely on other types of evi- dence to select appropriate action. Though anecdotal evidence and the popularity of the PPOR approach indicate that many communities are finding it useful, formal evaluation has been limited. Some cities have published PPOR analytic findings [17, 36–38], however, few have reported how the compre- hensive PPOR approach has led to lower rates and nar- rowed disparities in feto-infant mortality. The broader contributions of PPOR to improving MCH outcomes may become clearer as more cities report longer term results of the six stage approach. 872 Matern Child Health J (2010) 14:864–874 123
  10. 10. Conclusion Governmental public health agencies are charged with protecting, preserving, and promoting the public’s health and safety [8, 21]. The Perinatal Periods of Risk approach offers local health departments and their community part- ners a comprehensive approach for carrying out this charge for the women and infants in their jurisdictions. Its con- ceptual framework, staged approach, and accompanying tools provide local public health practitioners in more populous jurisdictions new ways to engage their commu- nities in lowering feto-infant mortality and improving women and infant’s health. Its optimal utilization may foster more effective MCH collaborations, extend tradi- tional infant mortality investigations to include precon- ception health, and enhance data and analytic capacity for state and local MCH practice. Perinatal Periods of Risk is a value-add approach that is showing a growing number of US urban communities how to translate data into strategic action for improved maternal and infant health through the life course. Acknowledgments We extend our gratitude to Dr. Brian McCarthy for developing and sharing his original methods and encouraging us to expand and adapt the approach for use in the United States. Thanks to Kathy Carson (Seattle WA) and others in the original pilot cities (Seattle, Boston and Honolulu) for giving us the green light to move ahead. Kudos to the Perinatal Periods of Risk Practice Collaborative (PPOR-PC) and Practice Advancement Collaborative (PPOR-PAC) teams for shaping best practices and harvesting lessons learned. Patrick Simpson and Dr. Vera Haynatzka at CityMatCH were instrumental in assuring strong foundations for developing the approach, and Carol Gilbert and Dr. Laurin Kasehagen provided critical expertise to finalize publication. And special thanks to Dr. Milton Kotelchuck for lending enduring expert editorial advice in shaping this keystone article. This work was supported in part by the following Cooperative Agreements: Merging Research and Practice for Urban Child Health—TS-283-14/16 (under CDC Cooperative Agreement U50/CCU300860); Building Urban MCH Capacity—TS 0922 (under CDC Cooperative Agreement U50/CCU300860); Toward Greater Science Use in Urban Health Agencies—TS-1337 (under CDC Cooperative Agreement U50/CCU300860); and the Maternal, Infant, and Reproductive Health: Science-Based Capacity Building for Major Urban Public Health Agencies (5 U65 DP724969- 05) between CityMatCH at the University of Nebraska Medical Center and the Centers for Disease Control and Prevention, National Center for Chronic Disease Prevention and Health Promotion, Divi- sion of Reproductive Health, with supplemental support from the National Center for Birth Defects and Developmental Disabilities, and the Health Resources and Services Administration, Maternal and Child Health Bureau. 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