“It is easier to build strong children than to repair broken men.” Promoting Early and Lifelong Health: A Roadmap from Adverse Childhood Experiences (ACEs) to the Promise of Resilience and Well-Being (Visit the CAHMI Data Resource Center Exhibit to Participate in Collective Insight process) Christina Bethell, PhD, MBA, MPH Lisa Simpson, MB, MPH, FAAP Michele Solloway, PhD, MPA AcademyHealth Annual Research Meeting June 2015 “It is easier to build strong children than to repair broken men.” Frederick Douglass (1817–1895)

Agenda for Our Time Engage you in this project and share about its background, motivation scope & outcomes Learn about your goals, perspectives and efforts Identify specific priorities for research and action that the child health services research community should be focused on

When our science, lived experience and policies meet We Are the Medicine When our science, lived experience and policies meet http://www.cahmi.org/projects/adverse-childhood-experiences-aces/

Project Goal (Spring 2014-Spring 2015) This goal of this project is to optimize the role and capacity of children’s health services to promote child and family wellbeing by further catalyzing awareness, knowledge and innovation to prevent, recognize and heal the impacts of adverse childhood experiences. Prevalence of 2+ (of 9) ACES: 16.3% (UT) – 32.9% (OK) Funding for this project has come from The Child and Adolescent Health Measurement Initiative (CAHMI) and the Robert Wood Johnson Foundation, with in-kind contributions from the California Endowment and our many research, family, policy and practice partners.

Four Pronged Project Scope (Spring 2014-Spring 2016) Build a coordinated child health services and policy research and action agenda Finalize Fall 2015 for open review Complete and disseminate early 2016 Agenda Publish a set of applied research papers to assess current knowledge, practice and translational research priorities Publications expected early 2016 Build Shared Knowledge

Four Pronged Project Scope (Spring 2014-Spring 2016) Assemble and develop resources to embed awareness and support the development of capacity, advocacy and innovation at three levels: – The clinician and family level – The healthcare organization level, including hospitals, clinics, and health plans – The health policy level, including system financing, organization, capacity and research support Capacity and Resources Promote the community-wide partnerships essential to promote health and address ACEs by strengthening the presence of children’s health services research, policy and practice in these larger child well-being and ACEs collective impact efforts Participation and Collective Action 1. American Academy of Pediatrics (2014) Addressing Adverse Childhood Experiences and Other Types of Trauma in the Primary Care Setting. Find: www.aap.org/en-us/Documents/ttb_addressing_aces.pdf. 2. Adverse childhood experiences: assessing the impact on health and school engagement and the mitigating role of resilience. (2014) Bethell, C, Newacheck, P, Hawes, E, Halfon, N. Health Affairs Dec; 33(12);210-2016 3. Short project meeting video: http://www.acesconnection.com/clip/we-are-the-medicine-5-min?reply=410425417487175152 4. Robert Wood Johnson Foundation: http://www.rwjf.org/en/about-rwjf/newsroom/features-and-articles/ACEs.html

Project Approach Emphasizes Legitimizes Calls Out Recognizes Concludes cross-cutting role of safe, stable, nurturing relationships to healthy child brain development and health across life the known impact of embedded and chronic stress on child development and well-being and adult health the syndemic of adverse childhood experiences, links to early & lifelong health and the possibility of healing and prevention that child development depends on adult development and the urgency to promote greater research and policy action that the health of children and our nation calls us to squarely address trauma and promote positive health—and the foundational role of safe, stable, nurturing relationships and neuro-repair to healing

“Social and emotional skills—also known as non-cognitive skills, soft skills or character skills-are the kind of skills involved in achieving goals, working with other and managing emotions. As such they manifest themselves in countless everyday life situations.” “Skills for Social Progress: The Power of Social and Emotional Skills” OECD, March 10, 2015

Overview of Adverse Childhood Experiences (ACES)

http://acestoohigh.com/got-your-ace-score/

Prevalence Among US Children (2011-12 National Survey of Children’s Health) Prevalence of 2+ (of 9) ACES: 16.3% (UT) – 32.9% (OK) Bethell, C, Newacheck, P, Hawes, E, Halfon, N. Adverse childhood experiences: assessing the impact on health and school engagement and the mitigating role of resilience. (2014) Health Affairs Dec; 33(12);210-2016

Almost half of US children have had at least one of 9 key adverse childhood experiences – an estimated 34.8 million children nationwide National Prevalence State Range Child had ≥ 1 ACEs 47.9% 40.6% (CT) - 57.5% (AZ)s Extreme economic hardship 25.7% 20.1% (MD) - 34.3% (AZ) Family discord leading to divorce or separation 20.1% 15.2% (DC) - 29.5% (OK) Has lived with someone who had an alcohol/drug problem 10.7% 6.4% (NY) - 18.5% (MT) Has been a victim or witness of neighborhood violence 8.6% 5.2% (NJ) - 16.6% (DC) Has lived with someone who was mentally ill or suicidal 5.4% (CA) - 14.1% (MT) Witnessed domestic violence in the home 7.3% 5.0% (CT) - 11.1% (OK) Parent served time in jail 6.9% 3.2% (NJ) - 13.2% (KY) Treated or judged unfairly due to race/ethnicity 4.1% 1.8% (VT) - 6.5% (AZ) Death of parent 3.1% 1.4% (CT) - 7.1% (DC) Bethell, C, Newacheck, P, Hawes, E, Halfon, N. Adverse childhood experiences: assessing the impact on health and school engagement and the mitigating role of resilience. (2014) Health Affairs Dec; 33(12);210-2016

ACEs Data and Reports Available Online: www.childhealthdata.org

ACEs Impact Multiple Outcomes General Health and Social Functioning Relationship Problems Married to an Alcoholic Poor Self-Rated Health Smoking Alcoholism High perceived stress Difficulty in job performance Hallucinations Promiscuity High Perceived Risk of HIV Depression Obesity General Health and Social Functioning Sleep Disturbances Risk Factors for Common Diseases Mental Health Memory Disturbances Poor Perceived Health ACEs Illicit Drugs Anxiety IV Drugs Panic Reactions 5 categories are… Examples of these categories are… But wait, there’s more… It is easy to look at this slide and to be overwhelmed, but I see potential because if all of these diverse outcomes are associated with ACEs, there’s at least the potential to impact upon all of these public health crises by preventing and addressing childhood toxic stress. Another way to breakdown this slide is to look at these 6 risk factors, which are essentially unhealthy lifestyles that are known to be maladaptive stress reduction techniques. THEY ARE ALL WAYS TO ESCAPE, even if only temporarily, THE STRESS OF LIFE. And most of the rest of these adverse outcomes can be attributed, at least in part, to these unhealthy lifestyles. So, this forces us to look at adolescent and adult health in a completely different manner. Are we going to continue treating all of these unhealthy lifestyles and symptoms of unmanaged stress, or are we going to pro-actively address the childhood antecedents – the root or distal causes? Which reminds me of the following public health parable… Prevalent Diseases Sexual Health Multiple Somatic Symptoms Poor Anger Control Cancer Liver Disease Teen Paternity Fetal Death Skeletal Fractures Chronic Lung Disease Teen Pregnancy Unintended Pregnancy Sexually Transmitted Diseases Early Age of First Intercourse Ischemic Heart Disease Sexual Dissatisfaction 15

Multiple Impact Pathways Graphic: Sandra Bloom

Impacts on chronic condition status appear early in life. Bethell, C, Newacheck, P, Hawes, E, Halfon, N. Adverse childhood experiences: assessing the impact on health and school engagement and the mitigating role of resilience. (2014) Health Affairs Dec; 33(12);210-2016

Bethell, C, Newacheck, P, Hawes, E, Halfon, N Bethell, C, Newacheck, P, Hawes, E, Halfon, N. Adverse childhood experiences: assessing the impact on health and school engagement and the mitigating role of resilience. (2014) Health Affairs Dec; 33(12);210-2016

Bethell, C, Newacheck, P, Hawes, E, Halfon, N Bethell, C, Newacheck, P, Hawes, E, Halfon, N. Adverse childhood experiences: assessing the impact on health and school engagement and the mitigating role of resilience. (2014) Health Affairs Dec; 33(12);210-2016

AOR: .26s AOR: 1.66s Bethell, C, Newacheck, P, Hawes, E, Halfon, N. Adverse childhood experiences: assessing the impact on health and school engagement and the mitigating role of resilience. (2014) Health Affairs Dec; 33(12);210-2016

We Know Resilience Matters—Need for Continuous Learning and Relearning of Resilience (“every stress an ‘n of 1’ self- study”) Bethell, C, Newacheck, P, Hawes, E, Halfon, N. Adverse childhood experiences: assessing the impact on health and school engagement and the mitigating role of resilience. (2014) Health Affairs Dec; 33(12);210-2016

Research and Action Agenda Methods and Status of Research and Action Agenda Collective Insight/CrowdSourcing Process (June 2014 and again June 2015) National 2-day meeting (AcademyHealth 2014) Living environmental and literature scan Ongoing key informant and small group interviews Ongoing input forums (PAS, AcademyHealth, APHA, NCPHC, AMCHP, etc.)

Join Out Collective Insight Delphi Process Give Us Your E-Mail to Participate in an Online Collective Insight/Delphi Process (sign up sheet; email us at info@cahmi.org or here or go to CAHMI/Data Resource Center Exhibit) Using an online tool (CoDigital), we are collecting and cultivating group insights on research, policy and action priorities to prevent and mitigate the impact of ACEs Key audiences: researchers, fed/state policymakers, pediatric providers, family leaders, private/public sector payers, health systems, community-based health program leaders, researchers

Phase I Collective Insight Questions Question 1: What should the specific goals of our community be related to ACEs and resilience? (e.g. the child health services research and policy community? Question 2: What research and policy domains and questions are highest priority? Questions 3: What are the research questions, policy actions and existing efforts to consider as priorities in an agenda?

Starting Point Child HSR/P Domains Organization and financing of health systems and services Access & coordination and services and resources Practitioner & family engagement, communication & behavior Measurement, informatics and clinical decision making Clinical evaluation and outcomes research Health professions work force capacity, training and support Six Fundamental Health Services and Policy Research Domains (embedded in larger community systems required to achieve impact)

Emerging Agenda Components Three interlocking components comprise the emerging research and action agenda:   Component #1:  Functions and Types of Research Component #2:  Priority Topics and Focal Areas Component #3:  Short Term Collaborative Actions

Component #1: Functions and Types of Research Design & Develop: synthesize existing knowledge and design and develop new translational knowledge, methods, and tools Implement & Evaluate: adapt, implement, and evaluate existing and emerging strategies to prevent and buffer impact of ACEs to promote well-being Educate & Communicate: assess existing awareness and contribute to public, provider and stakeholder education and awareness, knowledge and action. Disseminate & Support: develop methods and capacity to scale, spread and support effective prevention, intervention, and training models in the field

Component #2: Priority Topics and Focal Areas Meanings and Measures: Advance standardization of definitions, measures, Core Science:  Promote research to address gaps in science especially pertinent to policy and practice Primary Care and Public Health: Understand public health impact and opportunities for translation of knowledge into primary care and public health practice Communities: Know what a healthy community is and how to address ACEs through community based collaborations and efforts Economics: Define and measure economic impact of ACEs and return on investment through effectively addressing ACEs  

Component #3: Short Term Collaborative Actions Move the Game Board: Define a conceptual map and model to clarify definitions and foster shifts in mindset and norms to facilitate collective action Continuous Translation and Improvement: Synthesis, dissemination, translation, and ongoing assessment of existing models, methods, and practices Training and Capacity Building: Provider, community, and family education and training Policy Platform and Demonstration: Define recommendations to align health reform and systems design with needs and health improvement opportunities

Questions to Consider Today What should be the goals of the child health services, research and policies communities related to ACEs and resilience and positive health development? What research questions, program and policy actions and current programs should be considered as priorities in an agenda? Why is now a good time for a broader focus on ACES in health policy? What will it take for the health care delivery system, research and policy communities to respond to ACES? What do health policymakers, program leaders, pediatricians and the public need to know about ACES?  What are the most significant barriers to an improved policy response to ACES?  If there is one thing you could change in health policy to make progress on ACES, what would it be?

Connect with Us to Join the Conversation! info@cahmi.org Email us: Lisa.Simpson@academyhealth.org cbethell@cahmi.org Visit the CAHMI/Data Resources Center Exhibit Websites http://www.academyhealth.org/aces http://www.cahmi.org/projects/adverse-childhood-experiences-aces

Additional Slides

AcademyHealth AcademyHealth is a leading national organization serving the fields of health services and policy research and the professionals who produce and use this important work. Together with our members, we offer programs and services that support the development and use of rigorous, relevant and timely evidence to: Increase the quality, accessibility and value of health care, Reduce disparities, and Improve health. A trusted broker of information, AcademyHealth brings stakeholders together to address the current and future needs of an evolving health system, inform health policy, and translate evidence into action. 34

We are the medicine

This seems an important slide as Eliza thought our focus on adults would ring ‘new’ or ‘different’ for the investment committee, but I don’t know where to put it. I keep moving it around. I’ve had it here, but I’ve also had it after the cluster slides, before we get into the global work. After discussion with Al, this is where it ended up. Thoughts welcome. 37

“The free market is not very good at distributing compassion, nor is it particularly good at deciding whose suffering deserves recognition” Gary Greenberg The Book of Woe: The DSM and the Unmaking of Psychiatry (May, 2015)

There is no greater agony than bearing an untold story inside you Maya Angelou 5/13/13 Christina Bethell, PhD, MPH. ACES & Resilience CAHMI AH Project Overview