ADVOCACY AND SUCCESSFUL PARTNERSHIPS FOR IMPROVING ACCESS TO CARE

1. ADVOCACY AND SUCCESSFUL PARTNERSHIPS FOR IMPROVING ACCESS TO CARE Bistra Zheleva Children’s HeartLink

2. Advocacy activity aiming to influence decisions within political, economic, and social systems and institutions to make positive change Health Advocacy Enhancing community health and policy initiatives that focus on the availability, safety, and quality of care Legislative Advocacy Reliance on legislative processes (state or national) as a strategy to create change Lobbying Same as legislative but more narrow

3. In public health, advocacy is one of the strategies of health promotion and communication

4. WHO Chronic Disease UNICEF

5. Determinants of Access to Care Socio-Ecological Model Advocacy Policy and Regulatory Environment Health System Environment Hospital Interpersonal & Social Networks Individual Adapted from NIH 2016. Social and behavioral theories: Social ecological model adapted from U. Bronfenbrenner, 1977. http://www.esourceresearch.org/Default.aspx?TabId=736 and Innovative Care for Chronic Conditions: Building Blocks for Action, WHO 2002 and Lancet 2018 Global Health Commission on High Quality Health Systems

6. By 2030: • ① End preventable childhood deaths • NM, 12 per 1,000 live births • U5M, 25 per 1,000 live births • ② Reduce global MMR, >70 per 100,000 live births • ③Reduce by 1/3 premature mortality from NCDs • ④Achieve UHC, including financial risk protection • ⑤ Substantially increase health workforce in LMICs

8. PHC Conceptual Framework Primary Health Care Performance Initiative, WHO

9. Why is it important to advocate for access to CHD care?

10. Access to Pediatric Heart Care Congenital Heart Disease Availability • Not preventable & Lifelong • Highly complex • Expensive Quality Affordability

11. Low and middle income countries

12. CHD Public Health Framework

13. Congenital Heart Disease at Birth, in 2017 (cases per 100,000)

14. Cause of death rank in infants Zimmerman, Relative Impact Of Congenital Heart Disease On Mortality In Infancy Around The Globe: The Global Burden Of Disease Study, AHA. 2017

15. Leading Causes of Death in Children <1 year, 2017 (deaths per 100,000)

16. Congenital Heart Disease in India ~240,000 born with CHD each year ~60,000 require surgery in 1st year ~20,000 require intervention in 1st month

18. Regional Variations in India Distribution of infants with CCHD accessing surgery as compared to total number born with CCHD Distribution of infants born with CHD in India every year Saxena A. Congenital Heart Disease in India: A Status Report. Ann Pediatr Card 2015;8:177-83

20. Global YLDs and YLLs by Age, 2017 (RHD and CHD) • Aggregate Data • YLDs • RHD: 1,900,974 • CHD: 589,479 • YLLs • RHD: 7,492,586 • CHD: 21,634,418

22. Hoffman CVJ Africa 24:141;2013

23. Pediatric Cardiac Centers in India: 2016 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

24. Strong link between healthcare expenditure and lower child mortality

25. Share of Out-of-Pocket Expenditure on Healthcare, 2013 India 2015: 65%

26. Rashtriya Bal SwasthyaKaryakram Secondary& tertiary care is free of cost under National Health Mission

27. Recognition Diagnosis and Prioritization Stabilization and Transport Referral Treatment Follow-Up

28. CHD Care in NHS England • Quality assurance for surgical outcomes • Mandated data submission • Minimum volume & staff • Transparency • National data set • Clinical Networks – hub and spokes • Setting pathways • Staffing mandate • Regionalized care – not opening new centers Similar: Australia, NZ, Netherlands, Scotland, Sweden, Norway

29. UK Antenatal diagnosis of CHD NICOR database, John Thomson, Leeds General Infirmary, UK

30. Targets of PCP engagement across the life span. Adulthood M. Regina Lantin-Hermoso et al. Pediatrics 2017;140:e20172607

32. Health advocacy starts with numbers!

33. International Quality Improvement Collaborative Pediatric Cardiac Care in LMICs Data registry andquality improvement strategiesto reduce mortality and major complications for children undergoing congenital heart surgery Build community ~80,000 surgical cases 64 sites 24 countries

34. Hridyam

35. Determinants of Access to Care Pediatric Cardiac Care Framework Policy and Regulatory Environment • Health workforce • Medical education • CHD services planning • Quality service standardization • Health financing Health System Environment • Infrastructure for service delivery • Screening and detection capacity • Enabling technologies availability – supplies, equipment and medicines • Professional organizations influence • Clinical capacity and quality outcomes • Organizational capacity – Leadership and Multidisciplinary Care • Training and education capacity • Patient-centered care Hospital Interpersonal & Social Networks • Family, social community attitudes and norms Individual • Knowledge • Attitude • Skills Adapted from NIH 2016. Social and behavioral theories: Social ecological model adapted from U. Bronfenbrenner, 1977. http://www.esourceresearch.org/Default.aspx?TabId=736 and Innovative Care for Chronic Conditions: Building Blocks for Action, WHO 2002 and Lancet 2018 Global Health Commission on High Quality Health Systems

36. http://theinvisiblechild.childrensheartlink.org/