Reducing CHD burden: What can be accomplished through Public Private Partnership?

1. Reducing CHD burden: What can be accomplished through Public Private Partnership? R Krishna Kumar MD DM Professor & Head, Pediatric Cardiology Amrita Institute of Medical Sciences and Research Centre Cochin

2. Agenda • Burden of CHD vs. Resources • Public Vs. Private: Why make the distinction? • PPP under the Hridyam Program: Institutional Perspective • What has been accomplished? • Challenges and possible solutions? • Key lessons • Conclusions: Guiding Principles

3. Magnitude: CHD Population: 1.25 billion Live births: 27 million Total CHD at birth: 250,000 Estimated Major CHD @3.6 /1000: 97,250 Estimates of critical CHD @1.36/1000: 36720 Saxena A, et al. Arch Dis Child Fetal Neonatal Ed 2015; Vaidyanathan B et. al, IndianPediatr. 2011;48:25-30.

4. Resources for CHD care in India What is needed? What is available? Centers: ~50 (10% of requirements) Dedicated Pediatric Heart Surgeons: 60-80(3-6%) Pediatric Cardiologists: ~90-120 (<5%) Pediatric Cardiac Intensivists: < 20 (1%) Trained Nurses: always in short supply • @ One center/ 5-10 million*: at least 200-500 pediatric heart centers • Each center: • 4-5: pediatric cardiologists • 2-3: pediatric heart surgeons • 3-4: Intensivists Davis JT, Allen HD, Powers JD, Cohen DM. Population requirements for capitation planning in pediatric cardiac surgery. Arch PediatrAdolesc Med 1996;150:257-9.

5. Essential Elements • Infrastructure • Reasonable equipment • High level of skill among caregivers • Coherent teamwork • Supportive administration • Well-developed and mature referral base • Favorable economics and human development in the region • Economic sustainability / systems for charitable care • Sustainable systems and services: education and training • Ethical practice environment that is not totally profit driven

6. Interventional Cardiology Non-invasive imaging Perfusion Technologists Pediatric Cardiac Surgeons Anesthesiologists Electrophysiology Other support personnel Fetal Cardiology Pediatric Cardiology Pediatric Cardiac Surgery Comprehensive Pediatric Cardiac Care Adult congenital Transplant and Heart failure Medical Social Workers Intensive Care Intensivists Nutrition Respiratory therapy Nursing Infection control Clinical pharmacist

7. Resources for CHD care in India

8. Programs in Government Sector • North: 3/9 • West:2/6 • East: 0/5 • South: 4/28

9. Reddy KS. Health assurance: Giving shape to a slogan, Current medicine research and practice 2015;5:1-9. http:// www.cmrp-journal.com/article/S2352-0817(15)00012-4/ pdf [Last accessed on 2015 Aug 22].

10. Public Vs. Private: Perceptions Private Public/Govt. Resources and equipment? Accountability? Efficiency? Quality and outcomes? • Driven by self interests? • Profit is the only bottom line? • Disconnected from social realities? • Little charity; Only lip service?

11. Public vs. Private in Pediatric Heart Care • Blurred distinctions • Passion to take care of children: Key driver • Many of us are in the private sector because there are not enough opportunities in the government sector?

12. Hridyam: A paradigm shift

13. What has been different about Hridyam? • Infants and newborns • The networking • Training and capacity building • Meaningful engagement of the private sector • Attention to the care continuum

14. Hridyam • Brought us all together on a common mission • Sensitized us about socio-economic realities • Understand health system challenges • Help reduce health inequity • Helped understand one another

15. Health System Challenges for Congenital Heart Disease • Massive shortfall of pediatric heart programs • Failure to integrate pediatric heart care into universal health care models • Predominantly privatized health care Follow up Treatment • Limited awareness on initial management • Poorly developed newborn transport systems • Geographic distances • Cost of transport Transport Stabilization • Limited awareness of treatment options • Absence of pediatric heart centers in the region • Gender bias and socio-cultural factors Referral • Limited prenatal screening • Little newborn screening • Low awareness among caregivers on clinical diagnosis • Echocardiography availability and expertise Diagnosis Recognition

16. Reaching out to the previously unreached Data from 464 patients in the AIMS microeconomic impact study • Raj M, Paul M, Sudhakar A, Varghese AA, Haridas AC, Kabali C, Kumar RK (2015) Micro-Economic Impact of Congenital Heart Surgery: Results of a Prospective Study from a Limited-Resource Setting. PLoS ONE 10(6): e0131348. doi:10.1371/journal.pone.0131348 Picture reproduced with permission

17. Institutional Data: Since Sept 2017

19. Outcomes @ AIMS Audited data from the International Quality Improvement Collaborative (IQIC)

20. CME programs in neonatal screening, stabilization, transport and prenatal diagnosis

21. Lessons: Guiding Principles • Be mindful that resources are finite • Know when to draw a line • Strive to keep costs low • Communicate clearly and constantly • Constantly monitor quality • Respect all stakeholders. Affordability Quality

22. For the future… • Engage health administrators in the private sector • Constant system improvements through regular feedback • Look beyond the heart • Look to collect data systematically • “Congenital Heart Disease Registry of Neonates in Kerala (CHRONIK)”

23. CHRONIK: INTERIM DATA • Data Collection – Started on July 15, 2018 • Total number (15.1.2019) : 570 • Males : 297 (52%) • Antenatally detected : 85 (15%) • Mild CHD : 134 (24%) • Moderate CHD : 71 (13%) • Severe CHD : 365 (48%) • Critical CHD •        Duct dependent pulmonary circulation : 51 (9%) •       Duct dependent systemic circulation : 40 (7%) •       TGA : 42 (7.4%) •       Others (TAPVC ; Heterotaxy with TAPVC) : 47 (8.2%) • Follow-up data collected from 410 patients  •          Survival : 365 (89%) •          Deaths : 45 (11%)