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Adolescent Health - Indicators for Measurement and Accountability—A Necessary Step Towards Achieving Global Goals

      See Related Article on p.365
      The Global Action for Measurement of Adolescent Health (GAMA) Advisory Group was convened in 2018 by the World Health Organization (WHO) to establish agreement across UN agencies and other stakeholders on priority indicators to monitor adolescent health. Effective monitoring requires good measures, and one of the persistent challenges in adolescent health has been wide variability on the definition of adolescence, and on the ways to measure health. Establishing how to measure process and outcomes for young people is an important step in making progress toward better health and healthcare delivery. Accurate, comparable measures also allow for needed accountability in assessing national and sub-national progress toward the United Nations Sustainable Developmental Goal, as well as toward other health goals.
      In a recent issue of the Journal, GAMA reported on their work to identify 33 core domains from six priority areas for measurement: policies, programs, laws; systems performance, and interventions; health determinants; health and risk behaviors; subjective well-being; and health outcomes and conditions [
      • Guthold R.
      • Moller A.B.
      • Adebayo E.
      • et al.
      Priority areas for adolescent health measurement.
      ]. In this issue of the Journal, GAMA reports on a scoping review which mapped the landscape of existing adolescent health indicators that are being used (or have been used) to measure one or more of these 33 domains [
      • Newby H.
      • Marsh A.D.
      • Moller A.-B.
      • et al.
      A scoping review of adolescent health indicators.
      ]. The mapping exercise resulted in identification of 413 indicators from 16 different initiatives, which, after eliminating those without adequate specification and combining similar measures, resulted in 236 distinct indicators. This list provides an important starting point for selecting indicators for specific measurement and accountability tasks. And the process has strong validity, both with the numerous expert processes that generated these lists, and with the inclusion of youth representatives in the scoping work that defined the measurement domains.
      The authors appropriately note the limitations of their mapping exercise. They found many indicators that measure health outcomes and health behaviors, but found relatively few measures that assess policies and laws, systems performance and interventions, or younger adolescents. This is not surprising, as the scoping review relied on existing summary reports, and thus is likely to have been biased toward existing indicators drawn from domains that are intrinsically easier to measure. Measuring disease, and behaviors, rather than health systems and their performance, is a kind of observational bias which occurs when people search for things where it is easiest to look for them. This is the health service researcher’s version of the “streetlight” effect—looking under the streetlight for the lost keys, not because you lost them there, but because it is easier to see under the light [
      • Freedman D.H.
      Wrong: Why experts keep failing us.
      ].
      There is little doubt, especially for readers of the Journal of Adolescent Health, that many adolescents face significant barriers to achieving optimal health. Most preventable adult morbidity and mortality starts with behavioral choices made during childhood and adolescence. Institutionalized racism, discrimination, and other societal challenges are compounded by poor access to care and resource-limited health systems, affecting acute and chronic diseases, and physical and mental health. The COVID-19 pandemic has only made these disparities within countries and communities worse, and further constrains the ability of health systems to meet adolescents’ needs.
      The indicators that are least available are exactly the ones that are needed to assess whether policies are appropriate, whether health systems have capacity, and whether quality care has been delivered. This matters because clinicians and health systems can directly change or modify many of the measurable domains of adolescents’ access—availability, confidentiality, costs, convenience, utilization, and quality [
      • Klein J.D.
      • Slap G.B.
      • Elster A.B.
      • Schonberg S.K.
      Access to health care for adolescents. A position paper of the Society for Adolescent Medicine.
      ]—much more easily than we can change health outcomes. It is harder to hold government or private sector stakeholders accountable for ensuring appropriate care for adolescents if we do not have ways to track the services and systems young people need. Thus it will be critical to include system indicators in implementation efforts, even if they are not the most easily or reliably measured. The best available indicators in a domain should be used, rather than selecting only the most common or prevalent indicators for ongoing use.
      Another reason it is important for adolescent health stakeholders to understand the observational biases and advocate for these indicators is the history of resistance to some valid and reliable measures of system performance in the past. For example, measurement and quality improvement initiatives have identified valid and reliable measures for asking adolescents directly about the care they have received [
      Child and Adolescent Health Measurement Initiative
      The young adult health care survey.
      ,
      • Klein J.D.
      • Handwerker L.
      • Sesselberg T.S.
      • et al.
      Measuring quality of adolescent preventive services of health plan enrollees and school-based health center users.
      ,
      • Klein J.D.
      • Sesselberg T.S.
      • Gawronski B.
      • et al.
      Improving adolescent preventive services through state, managed care, and community partnerships.
      ]. (Short of direct observation, this is one of the best ways to assess whether confidentiality was part of the care delivered.) But implementation feasibility and the costs of directly asking adolescents about their experiences with care resulted in substantial resistance from health insurers, and led to this measure not being adopted into the Healthcare Effectiveness Data and Information Set by the U.S. National Committee on Quality Assurance.
      Similarly, effective measurement of preventive services has been able to identify opportunities for care improvement across large, state-wide populations [
      • Adams S.H.
      • Husting S.
      • Zahnd E.
      • Ozer E.M.
      Adolescent preventive services: Rates and disparities in preventive health topics covered during routine medical care in a California sample.
      ]. But most national and global surveillance systems focus only or primarily on behaviors, rather than on the health services potentially able to impact the behaviors of concern. For example, the U.S. Centers for Disease Control Youth Risk Behavior Surviellance System (YRBSS) and the WHO Global School Health Survey transiently included questions about positive youth development, and the YRBSS transiently included items on access and utilization of care; but these additions were transient, and were subsequently removed. Regardless of their accuracy, or the potential for identification of needed services, they were deemed less relevant compared to behavioral surveillance priorities. In selecting the domains that will be brought forward, it will be important for GAMA to consider measures that help countries and communities improve delivery systems. This will be essential if national governments and other measurement stakeholders hope to implement changes in care systems that will improve adolescents’ health and well-being.
      Although many reports have addressed adolescent health and well-being, most of them focus on young people’s behaviors and health status, rather than what policymakers or clinicians can actually do to affect process and outcome. GAMA’s ongoing work-plan is to address how priority indicators should be collected and reported and to provide technical assistance to encourage implementation of measurement and surveillance [
      • Guthold R.
      • Moller A.B.
      • Azzopardi P.
      • et al.
      The Global Action for Measurement of Adolescent health (GAMA) initiative—rethinking adolescent metrics.
      ]. Measuring these indicators does not necessarily provide the resources to act to address the underlying disparities and justice issues affecting young people. The factors affecting the social determinants of health will not change without underlying commitments and accountability by government. However, measuring the appropriate indicators can help show whether we are making progress. As the authors note, quoting former WHO Director General Margaret Chan, “what gets measured, gets done.” (Note: The phrase “what gets measured, gets done” is variably attributed to Austrian management theorist Peter Drucker [
      • Greenwood R.G.
      Management by objectives: As developed by Peter Drucker, assisted by Harold Smiddy.
      ] and to mathematical physicist and philosopher The Lord Kelvin in the 1,800 seconds (namesake for the temperature scale) [
      • Thomson W.
      1st Baron Kelvin > Quotes > Quotable Quote.
      ]. The phrase became ubiquitous in modern public health and quality improvement circles in the 1980s thanks to Donald Berwick and the Institute for Health Care Improvement (IHI). In the late 1990s, IHI expanded into numerous global health partnerships [
      Institute for Health Care Improvement
      More than 25 years of driving improvement.
      ], many of which were active projects during Dr. Chan’s tenure at WHO.)
      The Partnership for Maternal, Newborn and Child Health Call to Action for Adolescent Wellbeing [
      Child Health InitiativePMNCHPlan InternationalUNFPAUNICEFWHOUN Major Group for Children and Youth
      Adolescents 2030: A call to action for adolescent well-being.
      ] includes efforts to strengthen political commitment and funding for adolescent well-being and provide funding for services to comprehensively address the needs of all adolescents [
      Child Health InitiativePMNCHPlan InternationalUNFPAUNICEFWHOUN Major Group for Children and Youth
      Adolescents 2030: A call to action for adolescent well-being.
      ]. Harmonized measures are one step forward toward helping ensure the accountability of these commitments, so long as they lead to strategies that address meaningful system issues. Combined with new investments to address the needs of youth, these indicators will allow tracking of implementation and improvement of care systems for youth as part of nations’ commitments to improving the lives of young people.

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      Linked Article

      • A Scoping Review of Adolescent Health Indicators
        Journal of Adolescent HealthVol. 69Issue 3
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          A host of recent initiatives relating to adolescent health have been accompanied by varying indicator recommendations, with little stakeholder coordination. We assessed currently included adolescent health–related indicators for their measurement focus, identified overlap across initiatives, and determined measurement gaps.
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