Advancing Specialized Medical Capacity in Kerala

1. Advancing Specialized Medical Capacity in Kerala Child Health Summit Trivandrum, India 2019 Peter Hesslein MD, FRCP(C) Seattle, USA Building and Maintaining Systems for Quality Outcomes

2. Outline • Grateful acknowledgements: • Add’l Secretary Rajiv Sadanandanfor driving the Kerala initiative • Dr. Sreeharifor effectuating that initiative, and organizing this meeting • Children’s HeartLinkfor supporting the conference and my attendance • A little about me. • A little more about the organization that brings me here. • Something about the project that brings us together. • Lessons-learned as a 25-year medical volunteer that may apply to our shared goals.

3. A little about me: • American by birth. • Acquired Canadian citizenship, as well. • Trained in Pediatric Cardiology & Electrophysiology. • Academic practice at Hospital for Sick Children in Toronto, and later the University of Minnesota. • Non-academic hospital practice in Seattle since 2004. • Retired in 2018.

4. Volunteering for Children’s HeartLink (CHL) • First CHL experience 1994, in Costa Rica. • Since then, I have participated in CHL projects in 8 countries: • Costa Rica, Guatemala, Colombia. Kenya, Israel, Ukraine, China • India • First trip to India January 1999: • To scout partnership sites for CHL in Bangalore and Chennai • To teach the new interventional procedure of transcather ASD closure • This is when FATE INTERVENED!

5. Destiny Prior to embarking on that 1999 trip, I spoke to my colleague at the University of Minnesota, Dr. Gladwyn Das. Anticipating my first and perhaps only trip to India, I asked him what else I should see, given just a few extra days. He said I should not miss Kerala. He added that he had a “young friend” who was starting a new program in Cochin, and who “would love” to have someone like me to visit and critique his setup at the new Amrita Institute. Time doesn’t allow me to detail all the other “coincidences” on that trip, which convinced me that meeting Dr. Krishna Kumar (“KK”) was no accident. That encounter was momentous, both professionally and personally, for each of us.

6. Woody Allen as Zelig Tom Hanks as Forrest Gump These movie characters were present at numerous historical events. I sometimes feel that my own intersection with pioneers and seminal events in Pediatric Cardiology goes beyond simple coincidence. This may be just such a moment. I want to spend a little time describing the evolution of Children’s HeartLink; and the simultaneous evolution of Pediatric Cardiology in India; towards increasingly effective, complex and sophisticated care.

7. in follow-up… Return trip to India, March 2000 Continued collaboration in Bangalore, with a Mayo Clinic team Collaborated in Pediatric EP cases at AIIMS in New Delhi Presented at the newly-organized Pediatric Cardiac Society of India (PCSI), at their second meeting (in Kochi) Met Dr. Tandon Arranged for John Cushing of CHL to visit the Amrita Institute (AIMS) in Kochi, leading to a productive partnership

8. Homage Professor RajendraTandon(1931-2014) Father of Pediatric Cardiology in India Trained in Boston under Dr. Alex Nadas Established Pediatric Cardiology at All India Institute (AIIMS) in New Delhi Further evidence of a wormhole between India and Minnesota: He spent a 2-year sabbatical at the University of Minnesota (early 1970s) with Dr. Jesse Edwards, cardiac morphologist and medical diplomat.

9. About CHL Simply stated, the goal of Children’s HeartLink is to advance the worldwide treatment of heart disease in children. It does so by leveraging resources from various sources to help build, maintain, and improve treatment centers which have demonstrated a potential for sustainability. CHL works in collaborative partnership with requesting organizations. Its principal tools are medical education and organizational expertise. It emphasizes self-evaluation.

10. Programmatic Evolution of Children’s HeartLink 1969-80s Brought individual cases to Minnesota for surgical treatment of CHD 1990s Worked to build cardiac treatment capacity in individual overseas centers 2000s Concentrated on helping to develop centers of excellence since 2016 In highly selective instances (specifically Kerala and Malaysia), has sought to facilitate access to established centers byworking with governments to improve detection and referral of cases

11. Pediatric Cardiac Centers in India: 2013 Growth of Pediatric Cardiac Care in India * * * * * * Centers Performing Routine Infant Heart Surgery: 1998 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * Source: R. Krishna Kumar 2018

12. Infant Mortality and Congenital Heart Disease • Worldwide trend of falling IMR in recent decades, due to improved hygiene, better maternal care and nutrition, infection control. • Kerala enjoyed a much earlier start on this trend, but its progress has slowed. • Congenital defects, especially CHD, now represent the “low-hanging fruit” for all India. Kerala Sources: R Krishna Kumar; Wikipedia; and http://www.zanran.com/q/Infant_mortality_rate_and_Kerala:

13. The Kerala Approach to IMR Reduction: InfantCardiac Care • Early detection of congenital heart disease • Fetal ultrasound training, emphasis on 4-chamber and 3-vessel cardiac views • Delivery team and primary care training to enhance newborn exams • Neonatal pulse oximetry extending soon to all government delivery centers • Early referral of suspected cases • Hridyam web platform with open registration (primarily at DEIC level) • Assignment through Hridyam to a cardiac evaluation and treatment center • Development of a transport protocol • Surgical treatment • Enhance surgical capacity at government hospitals • Empanel private institutions • Hridyamestablishes enrollment for RBSK.

14. Some Words About Hridyam A real-time registry, developed and run by the government of Kerala, pinpointing cases of CHD. Any caregiver may initiate the registration. Website went live in August 2017, and a Stakeholders’ Meeting was held in March 2018, aimed at making early adjustments. Purpose is to facilitate the recognition and referral of children with CHD to centers where evaluation and treatment can occur. Government hospitals are preferred, but a handful of private centers in Kerala are also empaneled to deal with the volume and acuity of cases. Hridyam also serves as a vehicle for the swift identification of children with conditions that are eligible for RBSK funding. Hridyam has the potential to become a model for other governments, and for approaching other medical conditions.

15. The Current Situation in Kerala * * * * * *

16. The Plan in Kerala * * • Increase volume at GMC Kottayam • Build a new infant focus at GMC Calicut • Augment capacity at SCTIMS in Trivandrum • Develop a new center at SAT in Trivandrum • Partner with existing non-government hospitals in Cochin and Calicut * * * * * *

17. to summarize (so far)… Many parts of India have reached the point where CHD now represents a significant proportion of the remaining infant and child mortality burden. India has greatly expanded its capacity to treat CHD in recent years. It has hospitals, training programs, and even a formula for funding. Not yet enough, but progressing. The stage is set for expansion and coordination of CHD treatment. That process has already started in Kerala CHL is embedded in the Indian experience, and stands ready to assist.

18. Advice about building capacity:Lessons Learned over 25 years as a medical volunteer Triage (economic and social) is ubiquitous, but evolves. Sustainability of programs requires constant attention. Government support is often critical, but never sufficient. Clinical outcomes are increasingly important. Regionalization of referrals can be a stabilizing force. It always comes down to money.

19. 1. Triage in India must continue to evolve. Until recently, public health funds have been directed primarily to high-volume and definitively-treatable conditions. Not hearts. RBSK was launched in 2013 to direct public monies to the “4 D’s” affecting children: Defects, Deficiencies, Diseases, and Developmental Delays. This included 30 specific categories of identified health conditions, one of which is CHD. More recently, as CHD has been recognized as the low-hanging fruit left on the IMR tree in Kerala, RBSK funds have gravitated in that direction. Still, RBSK funds are specifically excluded from treating complex heart conditions, and are generally inadequate to completely cover many “simple” conditions. VSDs are not always simple!

20. 2. Sustainability Requires Constant Attention • All successful programs begin with an on-site visionary champion. • Visionaries cannot function alone. They must foster teams of empowered colleagues: surgeons, anesthesiologists, intensivists, cardiologists, nurses, administrators. • Continuous training is essential. (CHL can help) • Personnel retention is a major concern. • Such intense and demanding settings foster professional burnout. • Once specialized skills are obtained, there is always the financial and lifestyle lure of private or overseas practice.

21. 3. Government Support is sometimes critical, but never sufficient. Many, but not all the hospitals with which CHL has partnered over the years, are government-funded. All CHL partner sites share the goal of treating children otherwise excluded from care because of geography or economics. This should also be government’s concern. Government participation is sometimes the deciding factor for such programs, but cannot do it alone. Changes in government can be decisive.

22. 4. Clinical Outcomes Matter When I first started with CHL, there was a sense that “doing anything was better than doing nothing.” We accepted that our partner sites were embryonic, and might never achieve American levels of excellence. At about the same time, in the late 1990s, we began to look at simple quality metrics in the USA, and realized that we were ignoring huge quality variations among American centers. As it turns out, we weren’t always as good as we thought we were. November 1999: New York Times series of front-page articles focused on poor-quality surgery performed by Operation Smile on its overseas missions. This was eye-opening for me, and I took the issue to CHL. The Operation Smile approach was different from what CHL was doing. But we realized that we must hold ourselves and our partners to a high standard, and the only way to accomplish that was to track our results.

23. Tracking Outcomes • Pediatric Cardiac Care Consortium (PCCC) • Organized in 1982 at the University of Minnesota, a registry of pediatric cardiac procedures from up to 57 centers, with up to 30 years of follow up. • PCCC is still academically productive, but stopped collecting data in 2015. • Major limitations: Primarily North American centers; tracked too few quality indicators, and reported too slowly to be of immediate practical value. • International Quality Improvement Collaborative (IQIC) for CHD • Launched in 2008 by Dr. Kathy Jenkins at Boston Children’s Hospital. • CHL is one of its major advocates, and has a seat on its advisory board. • Currently involves 64 sites in 25 countries, including 19 hospitals in India. • Operates nearly in real-time. • Aims to create tailored QI strategies, and employs a telemedicine platform for timely dialogue and distance learning.

24. 5. Regionalization— A Double-Edged Sword On the Minus Side: • May work to the exclusion of patient choice, and the suppression of upcoming new centers. • May also strain existing capacity. On the Plus Side: • Helps concentrate case volume, to the benefit of quality and efficiency. • May engender systems of referral and transport that improve access to care from remote areas. • Requires full-throated government commitment, if it is to be effective.

25. 6. Money Always Matters Pediatricians everywhere (even the USA) are among the least-paid medical specialists. It follows that those who choose Pediatrics are not acquisitive! By the same logic, the bulk of those who choose government service are also “not in it for the money!” Still, treating CHD is expensive. That’s why, until recently, it has been a low priority for Public Health initiatives. I have yet to see a government funding plan that fully covers the cost of CHD treatment. The RBSK scheme is a laudable step towards serving this group of children, but State and National governments must remain generous, and must permit the inclusion of additional funding sources.

26. In Conclusion Thank you for your attention! • Recognition, evaluation, and treatment of of Congenital Heart Disease has undergone significant evolution in the past generation. • I have been privileged to observe this evolution, and to participate through my volunteer efforts. Probably my two greatest contributions: • Initiating the introduction and partnership between Amrita and CHL; • Participating in the shape and growth of Hridyam. • Government participation is important and welcomed, particularly when there’s a population focus, but caveats exist. • Kerala is a trendsetter, and may be an example for India and other countries.

29. John Cushing MHA, formerly International Program Director of Children’s HeartLink

30. 1. Triage is a moving target • Resources are always limited, even in the West: • In 1980, Jane Somerville of the UK cited treatment limitations. • Sick Kids Hospital in Toronto suspended surgery when budget was spent. • In the USA, resources are concentrated according to “payer mix.” • In the 2000s in China, heart surgery was severely restricted: • “Universal Health Care” in that communist regime meant everyone was covered, but coverage was not universal. • Heart surgery in particular was not government-funded; families paid. • During the 1-child policy, Boys only. • Definitive one-step repairs only. Nothing palliative or staged.