Living Well with Chronic Illness: A Call for Public Health Action

1. Living Well with Chronic Illness: A Call for Public Health Action IOM Committee on Living Well with Chronic Illness

2. Background Information Chronic Illnesses have emerged as major health burden: Increasing in prevalence and incidence Great impact on quality of life Major cost implications In 2010, the CDC and the Arthritis Foundation sought assistance from the IOM to: Identify population-based, public health actions that can help reduce disability Improve functioning and quality of life among individuals who are at high risk of developing a chronic illness and those with one or more chronic illnesses.

3. Statement of Task The sponsors advised the 17 member committee to focus the deliberations and recommendations in the report to: • Identify the consequences of chronic diseases that are most important to the nation’s health and economic well-being. • Identify which chronic diseases and populations should be the focus of public health efforts to reduce disability and improve quality of life. • Identify which population-based interventions can help achieve outcomes that maintain or improve quality of life, functioning, and disability. • Identify ways to highlight the morbidity of arthritis and influence systematic change to improve the lives of those living with arthritis. • Recommend population-based public health actions and strategies for implementation.

4. Committee Approach The committee’s work: 5 in-person meetings; Extensive literature reviews and internet searches regarding an array of topics areas related to chronic illness; Meetings related to public health and chronic disease prevention as part of the information-gathering process; Two public workshops; and Commissioned two experts to develop papers on specific topics to supplement the report.

5. Overall Intent The report Living Well with Chronic Illness: A Call for Public Action is a guide for immediate and precise action to reduce the burden of all forms of chronic illness through the development and implementation of cross-cutting and coordinated strategies to help Americans live well. The report and its recommendations are rooted in a population-based approach to support living well, with emphasis on the importance of public health action and leadership in the management of chronic disease.

6. LWWCI: Some Underlying Themes • An inclusive definition of “chronic illness” • Including illnesses of all causes and multiple chronic conditions • Attention to disadvantaged and minority populations • The need to understand the natural history of chronic illnesses across the lifecourse • The complex interface of public health and clinical chronic disease management programs • Improved national surveillance • The need for a new round of strategic planning with between federal and state public health agencies • Greater inclusion of quality-of-life measures

7. Multiple Chronic Conditions • MCCs woven into the report in many places • Current literature just beginning to deal with the complexity (biologic; taxonomic; therapeutic) • The need for research on optimal public health interventions • Distinguishing between disease variation, natural history and long-term consequences

8. Where Public Health Interventions Can Occur(And the Issue of MCCs) Other Int’ns Primary Prevention Secondary Prevention Secondary Outcomes Chronic Illness Lifecourse

9. The Approach to Selecting Illnesses for Control: A Menu, Not a List • Rationale: • CDC/state programs have addressed most common and severe problems • Objective criteria for public health import often orthogonal • Disability, QALYs, DALYs, YLLs, Morbidity, Economic Cost, Morbidity, Mortality, etc. • Desire for inclusiveness of a broad range of conditions • Cross-cutting symptoms as well as named conditions • Living with the fear/prospects of disease • Economic considerations • Attention to social consequences of illness • Programmatic discretion in chronic illness control programs • Proceed where proven program effectiveness (Winnable Battles)

10. Priority Pyramid Intervention Targets High-intensity interventions designed specifically to address the unequal burden of chronic disease in high-priority groups Intensive strategies aligning health care & and nonhealth care sectors to maximize quality of life & reduce complications Refinement guided by coordinated surveillance of living well outcome metrics Community-wide strategies that link with health care to support self-care, provide risk factor treatment, & prevention complications Environmental & Population-based policy interventions to support healthy living and primary prevention

11. An Exemplar (Natural History) Approach to Chronic Illness Management Presents an alternative approach to public health chronic disease control Validates the notion that all chronic illnesses have the potential to limit functional status, productivity and quality of life of people who live with them Avoids the trap of pitting one disease against another Looks at a broad set of clinical manifestations and other important consequences experienced by individuals living with chronic illness Allows for surveillance efforts, populations-based interventions and policies to be developed to capture and address a wide range of illnesses

12. The “Exemplars:” A Disease History Approach(See details in Chapter 2) • Arthritis (degenerative and rheumatoid) • Cancer survivorship • Chronic pain • Dementia • Depression • Type 2 diabetes • Post-traumatic disabling conditions • Schizophrenia • Vision and hearing loss

13. An Elaborated Model for Chronic Disease Care

14. A Renewed Emphasis on Community-Based Interventions in Public Health Lifestyle: Physical activity Tobacco Diet Screening & Vaccines Self-health management Weight control Disease management Respite care Treatment adherence Peer support CAM Caregiver support Cognitive training/ literacy Access and mobility The need for monitoring, evaluation and research

15. Extending Public Health Interventions: the Critical Role of the Workplace • Implementation of pilot health promotion programs to various types of workplaces for those with chronic illnesses • Provision of incentives to employers • Emphasis on: • Low wage employers • Small businesses

16. The Importance of Policy • See other reports from IOM and elsewhere (e.g., Law and Public Health) • Defining “policy” and its barriers • The role of values in policy formulation • Policies of great current interest: • Socio-economic status • Access to care • Transportation • Independent living • Mobility (e.g., ADA) • Care quality initiatives • Affordable Care Act: Implications for public health and prevention

17. New Imperatives for Surveillance of Chronic Illnesses • Expand the clinical dimensions of illness • Symptoms • Function • Health-related quality of life • Survivorship • Adverse effects of public health and clinical interventions • Longitudinal assessment of individuals and groups • Patient participation in chronic care management • Care models; self-management • Public health and prevention programs and venues

18. Greater Use of Newer Economic Methods for Supporting Public Health Interventions • Cost benefit and cost effectiveness methods • Emphasize long term outcomes • For selected illnesses of public health importance: methods used for national health accounts • Opportunity costs of various public health programs • Interventions addressing multiple chronic interventions

19. Collaboration among Public Health, Prevention and Community Sectors • Structures/approaches that support population health • Maintaining public health indicators • Responding to emerging population health threats • Alignment of public health and clinical interventions • System design • Incentives • Fuller and more innovative use of community venues for LWWCI

20. Recommendations The secretary of HHS should support the states in developing comprehensive population-based strategic plans with specific goals, objectives, actions, time frames, and resources that focus on the management of chronic illness among their residents, including community-based efforts to address the health and social needs of people living with chronic illness and experiencing disparities in health outcomes. Such strategic plans should also include steps to collaborate with community-based organizations, the health care delivery system, employers and businesses, the media, and the academic community to improve living well for all residents with chronic illness, including those experiencing disparities in health outcomes.

21. Recommendations, con’t The committee recommends that the Secretary of HHS and the CDC should explore and test a Health in All Policies approach with Health Impact Assessments as a promising practice on a select set of major federal legislation, regulations, and policies, and evaluate its impact on health related quality of life, functional status, and relevant efficiencies over time.

22. Recommendations, con’t The committee recommends that CDC: 1. Continue to review the scientific literature to monitor for potential MCC taxonomies that are useful for planning, executing and evaluating disease control programs of MCC occurrences. 2. Explore surveillance techniques that are more likely to capture MCCs effectively. This should include not merely counting the co-occurrence of diseases and conditions, but also the order of occurrence and the impact on quality of life and personal function. 3. Emphasize MCC prevention by testing and evaluating a set of public health interventions aimed at preventing or altering the course of new disease occurrences in individuals with MCC, or who are at risk for them. This might include established approaches, such as tobacco control or experimental approaches such as metabolic or genetic screening. 4. Increase demonstration chronic disease control programs that cut across specific diseases or multiple chronic conditions and emphasize mitigating the secondary consequences of a variety of chronic conditions, such as falls, immobility, sleep disorders and depression.

23. IOM Committee Members ROBERT B. WALLACE (Chair),University of Iowa, Iowa City RONALD T. ACKERMANN, Northwestern University Feinberg School of Medicine, Chicago, IL KAREN BASEN-ENGQUIST, The University of Texas, MD Anderson Cancer Center, Houston BOBBIE A. BERKOWITZ, Columbia University School of Nursing, New York, NY LEIGH F. CALLAHAN, The University of North Carolina at Chapel Hill RONNI CHERNOFF, Geriatric Research Education and Clinical Center, Central Arkansas Veterans Healthcare System and Arkansas Geriatric Education Center, University of Arkansas for Medical Sciences, Little Rock DAVID B. COULTAS, The University of Texas Health Science Center at Tyler SHERITA HILL GOLDEN, Johns Hopkins University School of Medicine, Baltimore, MD

24. IOM Committee Members, cont. JEFFREY R. HARRIS, University of Washington School of Public Health, Seattle RUSSELL HARRIS, University of North Carolina at Chapel Hill KATIE B. HORTON, The George Washington University School of Public Health and Health Services, Washington, DC M. JEANNE MIRANDA, Center for Health Services Research, University of California, Los Angeles MARCIA NIELSEN, Patient Centered Primary Care Collaborative, Washington, DC OLUGBENGA G. OGEDEGBE, New York University Lagone Medical Center, New York City PATRICK REMINGTON, University of WisconsinSchool of Medicine and Public Health,Madison DAVID B. REUBEN, David Geffen School of Medicine University of California, Los Angeles MICHAEL SCHOENBAUM, National Institute of Mental Health, Bethesda, MD

25. IOM Study Staff E. LORRAINE BELL, Senior Study Director PAMELA LIGHTER, Research Assistant CHELSEA FRAKES, Senior Program Assistant ANDREW LEMERISE, Research Associate HOPE HARE, Administrative Assistant AMY PRYZBOCKI, Financial Associate ROSE MARIE MARTINEZ, Senior Director, Board on Population Health and Public Health Practice