COPD National Action Plan

1. COPD National ActionPlan

2. What isCOPD? • Chronic obstructive pulmonary disease (COPD) is a progressive lung disease that over time makes it hard tobreathe. • Less air flows in and out of the airways because of one or more of thefollowing: • The airways and airsacs lose their elasticquality. • The walls betweenmanyof the air sacs aredestroyed. • The airway walls becomethick,and airways are narrowed byinflammation. • The airways make more mucus than usual, which can also clogthem. • Left untreated, people with COPD gradually lose their stamina and ability to perform dailyactivities.

3. Common Symptoms ofCOPD CONSTANTCOUGHING, sometimes called a “smoker’scough” SHORTNESS OFBREATH while doing everydayactivities INABILITY TO BREATHEEASILY or take a deepbreath EXCESS MUCUSPRODUCTION coughed up assputum WHEEZING

4. Who HasCOPD? • 16 million peoplearediagnosed, but millions more may have it and not knowit1,2 • It is estimated that 1 in 5 Americans age 45 years and older has COPD1,2 16 MillionDiagnosed BYGENDER3 56% WOMEN BY SMOKINGHISTORY1 38% CURRENT 37% FORMER OTHER1 25% OF CASES ARE NOTASSOCIATED WITH DIRECT CIGARETTE SMOKING 44% MEN

5. COPD:Challenges • Public Health Burden isLarge • A leading cause of death in theU.S. • Causes serious, long-termdisability. • Kills >150,000 Americans eachyear.4 • Available Treatments areInadequate Self-Management Education and SmokingCessation Bronchodilators InhaledCorticosteroids PulmonaryRehabilitation Oxygen Surgery INCREASINGSEVERITY

6. What is the COPD National ActionPlan? • The first-ever blueprint fora multi-faceted, unified fight against thedisease. • Developed at the request of Congress with input fromthe broad COPDcommunity. • Provides a comprehensive framework for action by those affected by thedisease and those who care about reducing itsburden.

7. COPD Town HallMeeting Set the foundation for the COPD National Action Plan More than 200attendees – including patients,caregivers, health care providers, industry leaders, academic leaders,and 14federal partners –participated Attendees separated into six breakout groupsbased on the original ActionPlan goals and developed 18 recommendations February 29 and March 1,2016

8. COPD National Action PlanDevelopment Developed first draftof Action Plan based on suggestions from COPD Town Hall Meeting May 2016 Solicited feedbackon first draft Action Plan from COPD Town Hall attendees Revisedthe Action Plan and submitted for public comment Reviewed more than 200 public comments andupdated ActionPlan ActionPlan underwent finalreview anddesign June2016 Sept.2016 Dec.2016 April2017 Released: May2017

9. COPD National Action PlanGoals Empower people with COPD, their families, and caregivers to recognize and reduce the burden ofCOPD. Improve the prevention, diagnosis, treatment, and management of COPD by improving the quality of care delivered across the health carecontinuum. Collect, analyze, report, and disseminate COPD-related public health data that drive change and trackprogress. Increase and sustain research to better understand the prevention,pathogenesis, diagnosis, treatment, and management ofCOPD. Translate national policy, educational, and program recommendations into research and public health careactions.

10. GOAL 1 Empower people with COPD, their families, and caregivers to recognize and reduce the burden ofCOPD.

11. GOAL 1: OPPORTUNITIESFOR ENGAGEMENT ANDPARTICIPATION Share culturally and linguistically appropriate COPD risk assessment tools and educational materials with people withCOPDand their families,friends, colleagues, and communitymembers. Work locally with stakeholders, partners, andcommunities disproportionately affected by COPD to support diseaseawareness. Organize and support local events and activities at hospitals, during community events and activities, and as part of workplace wellness programs; seek local earned media coverage; and utilize existing health observances, including World COPD Day and National COPD AwarenessMonth. Develop and execute train-the-trainer programs and distribute educational materials at state and federal levels thathaveunified messages andcalls toaction. Identify and engage new partners whocan address COPD, particularly those with the ability to reach populations mostaffected by thedisease,as well as thoseworking on policies aimed at tobacco-useprevention.

12. GOAL 2 Improve the prevention, diagnosis, treatment, and management of COPD by improving the quality of care delivered across the health carecontinuum.

13. GOAL 2: OPPORTUNITIESFOR ENGAGEMENT ANDPARTICIPATION Promote COPD assessment and treatment guidelines to health careprofessionals. Incorporate COPD detection, care, and treatment recommendations into clinicalsettings. Identify opportunities to increase health care professionals’ awareness and use of existingCOPD training, tools, andmodel programs. Develop and offerculturally and linguistically appropriate patient resources, including referrals and support services, tofurtherCOPDeducation. Develop, support, and encourage participation in COPD training programsfor health care professionals, particularly primary care practitioners. Use medical reminders for COPD risk detectionduring patients’ health carevisits. Educate health care professionals about national COPD detection, treatment, and careguidelines. Ask health care professionals to assess patients for COPD,including the use of spirometry, as appropriate, and then develop a personalized, written (or digital, if preferred) management plan.

14. GOAL 3 Collect, analyze, report, and disseminate COPD-related public health data that drive change and trackprogress.

15. GOAL 3: OPPORTUNITIESFOR ENGAGEMENT ANDPARTICIPATION Report the prevalence of COPD in accordance with the requirements ofpublic health and health care organizations. Work with public health authorities to improve the thoroughness and qualityof COPD surveillancedata. Use EHR/PHRtechnology to assess and evaluatethe capacity to monitor and control COPDand relatedservices. Collect detailed information about population-specific health disparities in COPD prevention, diagnosis, care, andtreatment. Promote research that tracks the prevalenceand incidence of COPD, including itsphenotypes. Create or continue to build existing COPD patient registries that helpevaluate and improve patient management, clinical care, andtreatment. Support surveillance projects and epidemiological investigations to help understand thecharacteristics andneeds of people at risk for and living withCOPD. Create a common portal database and make its use publicly accessible inorder to evaluate and enable predictivemodeling.

16. GOAL 4 Increase and sustain research to better understand the prevention, pathogenesis, diagnosis, treatment, and management ofCOPD.

17. GOAL 4: OPPORTUNITIESFOR ENGAGEMENT ANDPARTICIPATION Invest in, facilitate, and promote basic, clinical, and applied research to improve the diagnosis andtreatment of people with COPD; assess the impact of the home environment on patient management and treatment. Create COPD patient registries that helpevaluate and improve patient management, clinical care, andtreatment. Invest in, facilitate, and promote the development, regulatory review and approval, and use of new technologies to improvethe COPD carecontinuum. Promote the inclusion of information relevant to COPD in programs for training medical professionals and thenext generation of biomedical scientists. Identify risk factors and targets for preventive interventions for chronic lung disease usingongoing NHLBI-supported cohort studies. Test the feasibility of strategies for the prevention of COPD and demonstrate proof of principle in early phase clinicalstudies. Leverage NHLBI-funded programs, such as LungMAP, to developnovel approaches for cell-based therapies and lung regeneration that could be applied in late-stage emphysema. Leverage observational cohorts, such as the NHLBI- supported COPDGene and SPIROMICS studies, to identify subgroups ofpatients with COPD inwhich particular molecular pathways or pathophysiological mechanisms are critical in pathogenesis. Develop and test panels of biomarkers that can be used to identify individual patients within thesesubgroups. Conduct clinical trials for COPD that are designed to allow analysis of efficacy in predefined subgroups of subjects, thereby providing an evidence base for precision medicine. This applies both to trials of drugs that target particular molecular pathways and to trials of otherinterventions, such as pulmonary rehabilitation. Design and test novel approaches for better implementation ofeffective strategies for the case finding, diagnosis, and treatment of COPD in the community, home, and primary medical care environments. Investigate the prevalence and incidence of COPD in nonsmokers to contrastand compare them — and their responsiveness to currently available therapeutics — to patients with cigarette- smoke-inducedCOPD. Investigate the biological effects of nicotine and its delivery devices and products to better understand emerging threats to lung healththat may modify the onset or progression ofCOPD.

18. GOAL 5 Translate national policy, educational, and program recommendations into research and public health careactions.

19. GOAL 5: OPPORTUNITIESFOR ENGAGEMENT ANDPARTICIPATION Create quality-control performance metrics for COPD detection, care, andtreatment. Encourage the adoption and use of performance metrics for COPDdetection, care, treatment, and prevention. Assess the progress of the COPD National Action Plan’s initiativesbiannually. Share information about the COPD NationalAction Plan’sperformance.

20. Dissemination &Implementation • The entire COPD community owns thisplan. • All stakeholders have a role to play and must engage in itsimplementation. Patients and theirFamilies Government Agencies Scientific Investigators andPhysicians ProfessionalSocieties Public Interest Organizations and AdvocacyGroups Industry Partners

21. How You Might Use the COPD National ActionPlan WHICH GROUP DO YOUIDENTIFY WITHMOST? Policymaker Advocateor nonprofit Health professional Researcher Patient,family member, caregiver,or at-riskindividual GOAL3: Collect,analyze, report, and disseminate COPDdata GOAL4: Increase and sustainCOPD research GOAL1: Empower patients, their families, and caregivers to recognize and reduce burdenof COPD GOAL2: Equip healthcare professionals to provide comprehensive care to people withCOPD GOAL5: Turn COPD recommendations into research and public health care actions

22. How Can You Promote the ActionPlan? • Help bring visibility to the Action Plan among patients, caregivers, researchers, advocates, health professionals, policymakers, and anyone interested inCOPD. • Promotional materials available at COPD.nih.govinclude: • Outreach toolkit • Videos andanimations • Social mediaresources • Factsheets • Executive summary • PDF of the ActionPlan • FAQs • Andmore!

23. References Anne G. Wheaton, Timothy J. Cunningham, Earl S. Ford, MD, and Janet B. Croft., “Employment and activity limitations among adults with chronic obstructive pulmonary disease — United States, 2013,” Morbidity and Mortality Weekly Report (MMWR), 64 (11), pp. 289-295 (March 7, 2015), Centers for Disease Control and Prevention (CDC) David M. Mannino, Robert C. Gagnon, Thomas L. Petty, and Eva Lydick., “Obstructive lung disease and low lung function in adults in the United States: data from the National Health and Nutrition Examination Survey 1988-1994.” Archives of Internal Medicine, 160 (11), pp. 1683-1689 (June 12, 2000) Earl S. Ford, Janet B. Croft, David M. Mannino, Anne G. Wheaton, Xingyou Zhang, and Wayne H. Giles, “COPD surveillance — United States, 1999-2011,” Chest, 144 (1), pp. 284-305 (July 2013) Sherry L. Murphy, Jiaquan Xu, Kenneth D. Kochanek, Elizabeth Arias, and Sally C. Curtin., “Deaths: Final Data for 2015.” National Vital Statistics Reports, 66 (6), (November 2017)

24. COPD.nih.gov #COPDActionPlan