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Queen Sirikit National Institute of Child Health Year of nomination 2018

Supporting document

Document 1 of

CCHD Screening to Reduce Neonatal Mortality in

Content Page

Executive Summary 1 Background, Situation and Problem 5 Evaluation of the Initiative 7 Innovations of the Initiative 14 Implementation of the Initiative 19 Stakeholders 24 Resources 26 Monitoring and Evaluation System 28 Results 30 Obstacles and Solutions 33 Benefits and Mutual Benefit 35 Sustainability and Transferability of the Initiative 39 Success Story 42 Lesson Learned 53 Future Challenges 54 Acknowledgement 55

TITLE: CCHD Screening to Reduce Neonatal Mortality in Thailand

1. Executive Summary

1.1 Problem:

According to a 2012 World Bank report, the neonatal mortality rate in Thailand was 8.3 per 1,000 live births. This is much higher compared to Malaysia’s 4 per 1,000 live births and Singapore’s 1 per 1,000 live births. One of the Sustainable Development Goals’ (SDGs) targets is to end preventable deaths of newborns and less than 5 years old age which the success confirms by the index mortality rate of children fewer than 5 and neonatal mortality. Because neonatal mortality is approximate 50% of the mortality of children under 5, so that the newborn babies are vulnerable and need to be given special attention. Thailand has also been working to reducing the neonatal mortality rate as the ultimate goal of Thai National Health Service Plan for newborn.

Critical congenital heart diseases (CCHD) are prevailing problem worldwide. In Thailand, approximate 1,000 babies are born annually with CCHD, one important cause of Thai’s neonatal mortality. Though, newborn babies undergo routine physical examinations within 24 - 48 hours after delivery, CCHD may not be identified particularly those do not exhibit symptoms. However, after returning home, a neonate with congenital heart disease will develop severe symptoms and die before the family can bring him to the hospital or may arrive at the hospital in the critical condition. CCHD can be severe and the risk of death can become very high, also any number of crippling complications those will leads to other social and economic problems at the individual, family, society and country levels that result due to bereavement from loss of beloved babies or the family need to take care of disable babies. If an infant with congenital heart disease already exhibit severe symptoms, he needs to be taken care of

- 1 - at tertiary hospital with the necessary facilities and expertise. A newborn patient with congenital heart disease may also need to remain in the hospital for a longer period of time to receive the needed treatment. As a result, the medical expenses for the family can be extremely high. Another problem is that the longer a congenital heart disease patient has to stay in the hospital, the lower the turnover rate for beds for critically ill patients. Consequently, the overall operation and image of the hospital can be negatively impacted. It can be concluded that overall treatment for newborns with critical congenital heart disease in Thailand was reactive. Thus affect Thailand’s goal of reducing the neonatal mortality rate in Thailand.

1.2 Development of the Initiative

The Center of Excellence (COE) in Pediatric Cardiology is one center of excellence of Queen Sirikit National Institute of Child Health (QSNICH), the major public healthcare provider and policy maker for the improvement of healthcare service for newborns and children in Thailand, realizes the problem and commit to end preventable deaths of newborns due to CCHD and serving the Ministry of Public Health (MOPH) policy of reducing Neonatal Mortality. Currently QSNICH provides services to more than 1,300 to 1,400 child patients with congenital heart defects each year or approximately one out of every four such patients across the country because of their ability in doing the complete accurate diagnostic and give them comprehensive treatment. After studying the treatment chain for newborn with CCHD and found that the delayed of diagnosis and treatment is the most important factor that compromised this chain, QSNICH searched for the proactive prevented tool which is the pulse oximetry (PO) screening in newborns that will

- 2 - detect those newborns with CCHD before they develop the severe symptoms and be critically ill. The PO screening is a simple, painless, noninvasive, no risk and inexpensive technic, using simple device available in all hospitals, and gives reliable results. All trained health personnel can do the screening. Early detection of heart defects leads to the required proper monitoring and following up with pediatric cardiologists and establishing early treatment will also help decrease morbidity and mortality among these newborns.

Since 2002, studies of PO screening have shown a variety of criteria and effectiveness of this screening that has been accepted and recommended worldwide, but only few countries have adopted it as a mandatory public service for newborn. The research and development of PO screening was conducted to determine the most appropriate criteria and effectiveness of its implementation across the country by QSNICH and partners. Thus QSNICH initiates the innovative public service “CCHD Screening to Reduce Neonatal Mortality in Thailand” in 2013. The initiative aims to end preventable death of newborn with CCHD in Thailand by implement of the PO screening service in all hospitals providing the newborn delivery across the country. This involves the introduction of the PO screening to all relevant healthcare providers, training them and developing of the innovative interpreting tools to ensure effective detection of newborns with CCHD: the BB wheel interpretative tools, CCHD screening application, and the web- based data collection and system evaluation program for the hospitals implementing CCHD screening to report easily, and convince them that the screening is the procedure that worth to do since it can really save those newborns with CCHD. The PO screening for CCHD has since been adopted and included as public service, added to the routine physical examination for newborns. Furthermore it has been integrated into national newborn service plan to ensure the greatest and fastest of its transferability and sustainability.

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1.3 Impact of the Initiative

The initiative is established in 2013 then continuously expanded its network across the country. Recently the initiative has gained attention and been integrated into the national newborn service plan as the mandatory public service for newborns. The initiative also reaches out to the population by raising awareness, creating public demand to support health and well-being of these vulnerable newborns. It has significantly impacted the lives of the most vulnerable newborns, especially those with CCHD as shown by the evaluating system:

1. The number of hospitals implementing CCHD screening increased from 4 to 208 in 56 provinces 13 healthcare regions of Thailand within 5 years of the initiative, meaning the service provision has expanded to many areas of Thailand and that there is a good trend for partner cooperation. 2. The number of hospitals has grown rapidly after launch of the innovative CCHD screening smart phone application. 3. Newborns receiving screening have risen in number from thousand to hundreds of thousands annually meaning more children’s lives have been saved before it’s too late and that equality in access to the public service is promoted. 4. The number of newborns with positive screening results confirms the ability of health personnel to detect at-risk newborns and give them timely comprehensive lifesaving treatment. 5. the most important impact is the gradual drop in neonatal mortality thanks to the national healthcare service plan for newborns which includes the screening. According to a World Bank report, the rate has decreased from 8.3/1,000 live births in 2012 to 7.3/1,000 live births in 2016.

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1.4 Challenges of the Future The challenges of the initiative at the end of the Twelfth National Healthcare Development plan are to 1. Expand the PO screening service in newborns to 100% of hospitals providing newborns delivery in Thailand. 2. Have the formal MOU with NSHO to support the operational budget to all hospitals providing the PO screening service in all 13 Thailand’s s as in 13th. 3. Have at least 60% of newborns in Thailand each year receive the PO screening within 24-48 hours before discharging from the hospitals. These will confirm the true success of this innovative public service “CCHD Screening to Reduce Neonatal Mortality in Thailand” and the realization of Thai government, Ministry of Public Health to the Agenda 2030 Sustainable Development Goals and Targets as; SDG3, target3.2, 3.4, 3.8, 3.c and 3.d; SDG1, target 1.1; and SDG10, target10.3.

2. Background, Situation and Problems

According to a 2012 World Bank report, the neonatal mortality rate in Thailand was 8.3 per 1,000 live births. This is much higher compared to Malaysia’s 4 per 1,000 live births and Singapore’s 1 per 1,000 live births. One of the sustainable development goals’ (SDGs) targets is to end preventable deaths of newborns and less than 5 years old age which the success confirms by the index mortality rate of children fewer than 5 and neonatal mortality. Because neonatal mortality is approximate 50% of the mortality of children under 5, so that the newborn babies are vulnerable and need to be given special attention.

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Thailand has also been working to reducing the neonatal mortality rate as the ultimate goal of Thai National Health Service Plan for newborn.

Congenital Heart Defect (CHD) is a global prevailing problem, the incidence approximately 6-8/1,000 live births from over 730,000 newborns those are about 6,000 to 7,000 each year in Thailand. Among this group 1-1.5/1,000 or approximately 1,000 newborns develop CCHD, a leading cause of neonatal deaths. Though, newborn babies undergo routine physical examinations within 24-48 hours after delivery, many neonatal cases of critical congenital heart disease do not demonstrate any complications during the corresponding pregnancy and tend not to show any indication of the disease immediately within the first 48 hours after delivery. As a result, the responsible obstetricians and pediatricians are unable to conduct any initial diagnosis and end up discharging the mother and newborn. However, after returning home, newborns with congenital heart disease may develop severe symptoms since the abnormalities of their hearts lead to severe danger due to oxygen shortage, quickly turning them into critical blue or cyanotic babies and may not survive before the family can bring him to the hospital or may arrive at the hospital in the extremely critical condition. CHD are numbers of cardiovascular defects those may lead to Blue baby syndrome, including:

- Hypo plastic left heart syndrome - Pulmonary Atresia - Transposition of the great arteries - Tetra logy of the fallot - Total anomalous pulmonary venous return - Tricuspid Atresia - Truncus arteriousus - Coarctation of the aorta - Interruption of aortic arch - Critical Aortic Stenosis A review of the relevant literature indicates that up to a staggering 10 to 30% of newborns with critical congenital heart disease die before being diagnosed that they were born with CCHD. If an infant with congenital heart disease already exhibit severe symptoms, he needs to

- 6 - be taken care of at tertiary hospital with the necessary facilities and expertise. Treatment of these blue babies can be severe and the risk of death can become very high, also high number of crippling complications those will leads to other social and economic problems at the individual, family and society that result due to bereavement from loss of beloved babies or the family need to take care of disable babies. They also need to remain in the hospital for a longer period of time to receive the needed treatment. As a result, the medical expenses for the family can be extremely high. Another problem is that the longer a congenital heart disease patient has to stay in the hospital, the lower the turnover rate for beds for other critically ill patients, which leads to the problem of NICU shortage and rising of the global national healthcare budget as a whole. Consequently, the overall operation and image of the tertiary hospitals can be negatively impacted. It can be concluded that overall treatment for newborns with critical congenital heart disease in Thailand was reactive. Thus affect Thailand’s ultimate goal of reducing the neonatal mortality rate. This scenario needs to be improved.

3. Evaluation of the Initiative

The Center of Excellence (COE) in Pediatric Cardiology is one center of excellence of Queen Sirikit National Institute of Child Health (QSNICH), the major public healthcare provider and policy maker for the improvement of healthcare service for newborns and children in Thailand, realizes the problem and commit to end preventable deaths of newborns due to CCHD and serving the Ministry of Public Health (MOPH) policy of reducing Neonatal Mortality. As such, it has foreseen the problems in the healthcare process for newborns with CCHD. These problems include issues during treatment of this group of infants, the severity of the disease, the complications of treatment as well as the excessively high expenditures to be incurred for medical care. Other problems to consider are the lengthy hospital stay required. This will lower the efficiency of the turnover rate of beds for critically ill patient since the number of patients will exceed the number of available beds.

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In developed countries such as the United States of America, a pulse oximeter (PO) apparatus is used to screen blue - type CCHD newborns. This technique identifies afflicted newborns before they show any symptoms. The PO is one of the tools generally used in almost all hospitals and measures the oxygen level in the blood flow through the skin. It is a non-invasive method that involves attaching the meter to the end of a finger or toe. Not only does it provide a quick and highly precise reading, it is also small in size and inexpensive and can be moved with ease. Its sensitivity is 76.5% with a specificity as high as 99.9%. Due to the prevalence of children with positive screening results abroad being approximately 1.5 to 2 children in every 1,000 live births, a nationwide advisory was issued in the U.S. for pediatricians to screen infants.

QSNICH arranged the meeting for brainstorming to address the problem and situation analysis, many tertiary care hospitals those were affected with the same problem, joined this brainstorming. The results is the before and after situation analysis that focused on the treatment chain for Newborns with delayed diagnosis of CCHD as shown in Figure 3.1. The analysis revealed that the delayed diagnosis and treatment is the most important factor that compromised this chain, QSNICH searched for the proactive prevented tool which is the pulse oximetry (PO) screening in newborns that will detect those newborns with CCHD before they develop the severe symptoms and be critically ill. The PO screening is a simple, painless, noninvasive, no risk and inexpensive technic, using low cost pulse oximeter device available in all hospitals, and gives reliable results. All trained health personnel can do the screening. In general, primary medical personnel overseeing newborns were able to provide PO screening; they could identify these newborns with CCHD. This would make it possible to refer these positively screened newborns for further in-depth diagnosis and treatment before the infant displays any severe symptoms. Early detection of heart defects leads to the required proper monitoring and following up with pediatric cardiologists and establishing early treatment will also help decrease morbidity and mortality among these newborns.

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Figure 3.1 Before and After Situation Analysis: Treatment Chain of Newborns with CCHD

In 2012, QSNICH joined forces with 12 hospitals to conduct a pilot study on the use of a PO device to screen for CCHD in neonates and evaluate the effectiveness of the PO screening. The 12 hospitals included Nopparatrajathanee Hospital, Charoenkrung Pracharak Hospital, Bhumibol Adulyadej Hospital, the Police General Hospital, Hospital, Rajvithi Hospital, Pranangklao Hospital, Phaholpolpayuhasena Hospital, Chaophrayayommarat Hospital, Pranakron Sri Ayutthaya Hospital, , and finally . Thailand’s National Health Security Office (NHSO) of Zone 13th funded the pilot study. The sampling population is 50,000 patients. Of these patients, 21 were diagnosed as positives, means that these newborns were at risk of having CCHD (the percentage of positive case from this study is similar to other studies). All 21 patients received preliminary treatment before displaying any symptoms. They were then sent to receive further comprehensive treatment as per their individual requirements. This pilot study showed True positive rate is 0.4/ 1,000

- 9 - with the sensitivity 63% and specificity 99.9% Thus the Guideline for PO screening in Newborns and distributed to all hospitals involved in the program.(Figure 3.2) However, the result from cases follow up during the pilot study showed that there were 11 false negatives, (this percentage of false negative is higher than the other studies) means the failure of the screening in detecting newborns with CCHD that will truly compromise their wellbeing. QSNICH and collaborated hospitals got together regularly and plotted out the weak point of the procedure from the supply chain of the PO screening service and try to improve the quality, standard and effectiveness of service.

Figure 3.2 Guideline for Critical Congenital Heart Disease in Newborns

After the pilot study results confirmed the precision and credibility of the screening technique. Indeed, the pilot study results were put into practice and it was seen that the innovative screening process was effective and reliable. Thus, QSNICH decided to publicly reveal these findings in order to exchange knowledge and provide this key information to the medical community. This initiative was able to impart

- 10 - the importance and benefits of the screening technology. QSNICH has a role of duty to provide national health national policy for newborn and children that made the CCHD screening process available to all children. After delicate brainstorming, doing SWOT analysis (Figure 3.3), QSNICH decided to launch the initiative named “CCHD Screening to Reduce Neonatal Mortality” in 2013, which aims provide the PO screening as the mandatory public service to all newborns in Thailand and end preventable deaths of the vulnerable newborns suffering from delayed or undetected CCHD. Proactive service has been put in place by PO screening to identify potential threats before they arise and become critical. The innovative PO screening public service allows these infants to have the chance to get immediate medical attention before their conditions become critical. This also means that infants will require less care time and will not be required to spend as long in the hospital. Thus the reduction of Thai neonatal mortality is coming as the ultimate goal of this initiative. Funding from the Department of Medical Services (DMS), Ministry of Public Health (MOPH), and QSNICH has been empowered to disseminate the initiative and provide training to regional and provincial hospitals in the various s around the country to make PO screening in newborns as the mandatory service added to the routine physical examination for newborns age 24-48hours.

In addition, QSNICH also provided training in the new screening process and also expanded its network and coverage for the CCHD screening to reduce Thailand’s infant mortality rate. QSNICH continued to enhance its heart disease knowledge and expertise. It also expanded its reach to each health region through supervision, supervised visits, academic lectures, and guidelines for screening heart disease child patients at the provincial hospitals and within the hospital network. In addition, it provided support to develop the screening potential at community hospitals. To improve the screening process even more,

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funds were allocated to the various hospitals in the health regions. These funds were used to provide more training in the district hospitals of each province. This will accelerate the transferability of the application. The CCHD screening innovation has been replicated by many hospitals nationwide, covering all 13 s of Thailand. The hospitals involved in the initiative, are those hospitals provided newborn delivery service across the country. Figure 3.3 SWOT analysis of CCHD Screening

Strengths (S) Weaknesses (W) 1. Clear objective to reduce the 1. The healthcare personnel barely neonatal mortality rate in the concern the importance of CCHD country. screening due to insufficient 2. MOPH (by QSNICH) is the main knowledge of it effectiveness in provider in response to this problem. detecting newborns with CCHD. 3. Pulse oximetry screening initiative is 2. Reactive care of neonates those high accuracy and effective service, develop severe symptoms. using PO which is compact , 3. Newborns in crisis or with severe portable, easy and short time conditions take longer period for operation, and suitable for detection treatment, which compromised of newborn with CCHD that will the turnover rate of NICU beds. significantly play role in reduction of Thai neonatal mortality. Opportunities (O) Threats (T) 1. Realize global and national agenda 1. Increase expenditures in medical to reduce neonatal mortality rate. treatment for newborn with CCHD 2. As it can truly save lives of those are in critical condition. newborns with CCHD, the 2. An attempt to push forward the collaborations between healthcare project national policy is network is likely to be successful. unsuccessful as it should without 3. Knowledge dissemination for CCHD the support from public demand. screening is specified as 3. Provision of the PO screening management criteria of National service as the mandatory public Health Agenda service add into the routine physical 4. MOPH is the one public and main examination of newborns including health care provider of Thailand. doing the report give staffs more Thus give better opportunity to workloads. encourage network hospitals to implement the screening as mandatory practice.

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This initiative has declared one of its main goals to be the reduction of national neonatal mortality targeting newborns with CCHD as this is one of the leading causes of newborn fatalities and clarified the objectives of the initiative that focus on 7 areas;

1. Reduce the neonatal mortality. Thai’s rate is higher than the neighboring Singapore and Malaysia. This is directly in line with SDG 3.

2. End preventable deaths of vulnerable newborns from undetected CCHD which lives for the good of their family, society, country and the world at large.

3. Provide training of PO screening technic and QSNICH's innovative result interpreting technic to empower health providers.

4. Raise the national healthcare standards of practicing routine physical examination of newborns throughout Thailand by standardization and qualifying the mandatory PO screening.

5. Create public awareness thus generating greater public demand for this lifesaving neonatal CCHD screening;

6. Reduce the newborn’s length of hospital stay for CCHD treatment by early detection and treatment of newborn with CCHD before development of severe cyanosis, resulting in shorter hospital day which realize the problem of shortage of needed Newborn Intensive Care Units (NICU) and saving of national health resources thus ensuring the reduction of national health budget as a whole.

7. Integrate the screening service into national newborn service plan throughout 13 s of Thai healthcare system. This create equal access to the public service across the country as it is put as a routine physical examination of newborns in 13 s across Thailand, thus matching SDG 10.

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4. Innovations of the Initiative

Thailand’s healthcare for newborns with CCHD used to be reactive. Therefore, the introduction of pulse oximetry screening as proactive measure under the "CCHD Screening to Reduce Neonatal Mortality Rate” initiative by QSNICH to all healthcare providers nationwide is a true innovation. The screening is now part of the routine physical examination for newborns. Within the 5 years implementation of initiative, there are other innovations arising alongside towards the Continuous Quality Improvement of PO screening Service in Thailand such as the BLUE BABY WHEEL (BB wheel), the “CCHD screening” smart phone application (compatible with both iOS and Android operating systems), the real-time monitoring and evaluation web-based program for the CCHD screening and the integration of the initiative into national newborn service plan.

BLUE BABY WHEEL (BB wheel)

BLUE BABY WHEEL (BB wheel) the first innovative interpreting tool of the initiative is an innovative, low-tech, inexpensive tool used to collect and properly interpret, to address the problem of healthcare workforce cannot remember the criteria of the PO screening and the first version guideline is not attractive and available for the operator.

The PO screening service continuously expanded and regularly evaluated to improve the quality of service using PDCA quality tool.

However, the result from cases follow up during the pilot study showed that there were 11 out of the 47,253 readings as false negatives, which means that the screening process has been compromised and also those newborn’s wellbeing. This percentage of false negative at 0.023% is higher than the other studies. Also after the original guidelines were in use for one year in hospitals around Thailand, it was found that there were some issues in determining results as this required memorizing too many set of number which accounted for error. This method yielded a misidentification in 70 out of every 10,000 screened patients QSNICH and collaborated hospitals got together regularly and plotted out the weak point of the procedure from the

- 14 - process chain of the PO screening service (Figure 4.1) and try to improve the quality, standard and effectiveness of service.

Figure 4.1 Process Chain of PO Screening

In view of this information, that process of collecting these results for diagnosis was compromised due to the operator forgetting the proper screening criteria. Then the innovation “BB wheel” has been developed by QSNICH’s expert group of Pediatric Cardiology COE. The wheel is simple, cheap and attractive to the operates. This wheel was designed to quickly identify oxygen levels within the bloodstream. A plastic sheet is cut into two circles with an eight-centimeter radius. These wheels are layered on top of one another with a pin through the center. This allows the top wheel to spin independently of the bottom. The bottom wheel contains the various oxygen saturation values and screening benchmarks. The top wheel contains instructions to use the wheel and four clear slots that will line up with the values on the bottom wheel. (Figure 4.2 and 4.3) After the introduction of this particular tool to interpret the oxygen saturation level measured. The information provided in plastic on the wheel is in accordance with the American Academy of Pediatrics (AAP). Thus, it is easy to understand, efficient and effective. Once the wheel was put into use, it was found that in 30,000 patients there was not a single error in the screening process results ensuring accurate, quality and efficient screening service.

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Figure 4.2 Blue Baby Wheel

Figure 4.3 Using Blue Baby Wheel

“CCHD screening” smart phone application

Furthermore, This is the information and communication technology (ICT) era, so that QSNICH cooperated with King Mongkut's University of Technology North Bangkok (Prachinburi Campus), using ICT to develop another innovative interpreting tool as the “CCHD screening” smart phone application (compatible to both iOS and Android operating systems) to In order to simplify the screening process even further and offer another version of BB wheels that is more attractive and lifestyle-appropriate for those familiar with ICT. (Figure 4.4)

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Figure 4.4 Blue Baby Wheel application screen

The operators can download the mobile application from the link http://pacs.lph.go.th:8181/cchd supplied by QSNICH. The program is user friendly as only enter the number of Sat O2 from hand and of newborn, the application will calculate and give the result as repeat or negative or positive. (Figure 4.5) The application can be directly downloaded onto a mobile device or computer. This also eliminates the need to carry around and missing of the BB wheel making the process more fruitful to operators. Figure 4.5 Blue Baby Wheel Application

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The web‐based Evaluation System of the Initiative

Since fiscal year 2014, many new hospitals have become part of the program. As a result, the amount of patient information coming in from hospitals all over the country has increased. To handle all of this patient data, QSNICH has had to develop a web-based data registration program and expand the storage space. QSNICH continuously develop the innovative service at each step, from patient data collection to interpretative diagnosis, and finally the monitoring and evaluation system using a web-based computer program to ensure complete data, convenience, speed, and screening results availability nationwide that is quick, accurate, precise, credible, and timely. Last, but not least, the real-time monitoring and web-based evaluation system for the CCHD screening was created through the cooperation of regional hospital and QSNICH, in order to store and report data on the initiative to DMS and MOPH respectively. The hospitals implementing PO screening (Figure 4.6) need to register into the program and report the number of screening cases and positive cases.

Figure 4.6 CCHD Screening Application Form

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The integration of the initiative into national newborn service plan

Moreover the integration of the initiative into national newborn service plan has introduced the innovative idea, policy, and management system, which is new and unique in Thailand, to ensure all its transferability and sustainability including the quality and rapidly growth of this public service to vulnerable newborn that align with SDG 3 and 10.

5. Implementation

Since the SWOT analysis showed more advantages than disadvantages, QSNICH set the strategic plan and operational plan to manage for the operation of the initiative “CCHD Screening to Reduce Neonatal Mortality in Thailand” in 2013.

The strategies putted in place to achieve the objectives of the initiative are as followings:

Strategy 1: Create innovations and continuously quality improvement of the CCHD screening service initiative QSNICH continuously develop the innovations at each step, from patient data collection to interpretative diagnosis; BB wheel and CCHD screening smart phone application, and finally the monitoring and evaluation system using a web-based computer program to ensure complete data, convenience, speed, and screening results availability nationwide that is quick, accurate, precise, credible, and timely as mentioned in item 4. Strategy 2: Generate understanding and realization of CCHD screening importance among relevant healthcare workforce • QSNICH has collaborated with doctors and caretakers of children afflicted with heart disease at hospitals that provide services and care for newborns to act as a center for cooperation with teams responsible for newborn. • Coordinate meetings with neonatal teams at each hospital to 1. Generate awareness and understanding of the problems amongst the

- 19 - responsible parties, 2. Persuade them to actively participate in tackling this critical issue, and 3. Provide a platform for meetings to give all participating hospitals the opportunity to present their performance outcomes to promote knowledge exchange. • Present the CCHD Screening to Reduce Neonatal Mortality project to detect newborns with CCHD using a pulse oximetry screening service and provide guidance for implementing the screening project through the meeting, seminar and conference with the relevant topics. Strategy 3: Develop the potential of healthcare workforce and quality of the service • QSNICH provides the training course of the CCHD Screening to Reduce Neonatal Mortality, comprised of speakers, equipment and advisory services, for hospitals implementing the initiative and commit to provide PO screening service to newborns. • QSNICH provides all facilities to the mentor hospitals for further training to the smaller hospitals with in the same geographic area to disseminate the model of the CCHD Screening to Reduce Neonatal Mortality. • Follow ups and supervision of the hospitals implementing the initiative during site visits and performance briefings. This will also include a review of implementation problems and solutions undertaken by each hospital. Strategy 4: knowledge Management of innovations and guideline of PO screening service to exchange with hospitals nationwide • Develop a practical guideline to standardize the PO screening procedure in Thailand based on advisory suggestions of the American Academy of Pediatrics (AAP) and the American Heart Association (AHA) medical committees. • Campaign of knowledge sharing in the PO screening service and the initiative to gain attention from healthcare workforce having good understanding and positive attitude to end the preventable deaths of newborn with CCHD by doing this screening service for newborns.

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Strategy 5: Creating public demand among parents QSNICH collaborates with partners in Public Communication to regularly promote awareness among parents about the newborn risk due to CCHD and how to prevent the death of newborns having CCHD. The lists of varieties of media have been provided in supporting document 2. Strategy 6: Partnering There are numbers of partners, collaborators, and stakeholders involved in the initiative both directly and indirectly those will be described in detail in Item 6. The initiative’s operation planes each year are shown in Figure 5.1

Figure 5.1 Operational Plan and Budget

Budget Item Activities (Baht) 2014 1 Meeting with CCHD committee from network hospitals 5,850

2 Organize CCHD workshop with lectures, hands on cases 168,900 by invited honorary instructor from London, United Kingdom 3 Invited experts from network hospitals to share 119,250 knowledge about echocardiogram to enhance academic knowledge and treatment innovation 4 Host a seminar on CCHD screening focusing on 109,000 physicians, nurses, health care personnel and nurses from post-delivery ward from network hospitals across Thailand 5 Site visit to monitor and organize workshop training in 397,000 CCHD screening in 9 provinces (Udon Thani, Pisanulok, Konkhaen, Kanjanaburi, Ayuddhaya, Suphanburi, Ratchaburi, Saraburi and Nonthaburi)

Total Budget 800,000

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Budget Item Activities (Baht) 2015 1 Meeting with CCHD committee from network hospitals 5,250 2 Exchange experience in the problems of CCHD 652,000 screening to reduce infant mortality rate in Thailand 4 times (Pissanulok, Ubon Ratchathaini, Surat Thani, Songkla) 3 Invited experts from network hospitals to share 123,750 knowledge about echocardiogram, MRI, CT scan, and cardiac catheterization to enhance academic knowledge and treatment innovation 4 Site visit to monitor and organize workshop training in 319,000 CCHD screening in 23 provinces (Chiangmai, Chiangrai, Udon Thani, Konkhaen, Burirum, Nakon Nayok, Nontha buri, Pathum Thani, Ayuddhaya, Lopburi, Saraburi, Singburi, Angthong, Kanjanaburi, Suphanburi, Petchaburi, Nakon pratom, Ratchaburi, Samutsongkram,Samutsakorn, Prajuabkirikhan, Nakhon Sri Thammarat, Phuket) 5 Support budget to 33 network hospitals in 1,900,000 regional/province/district and community level for operation development and data collection in CCHD screening

Total Budget 3,000,000

2016 1 Meeting with CCHD committee from network hospitals 5,250 2 Exchange experience in the problems of CCHD 652,000 screening to reduce infant mortality rate in Thailand 4 times (Pissanulok, Ubonratcha thani, Surat Thaini, Songkla) 3 Invited experts from network hospitals to share 123,750 knowledge about echocardiogram, MRI, CT scan, and cardiac catheterization to enhance academic knowledge and treatment innovation

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Budget Item Activities (Baht) 4 Site visit to monitor and organize workshop training in 319,000 CCHD screening in 28 provinces (Chiangmai, Chiangrai, Udon Thani, Ubon Ratchathaini, Nakhon Sri Thammarat, Phuket,Songkla, Kamphaeng Phet , Chainat, Pichit, Nakhonsawan, Uthai Thani, Kanjanaburi, Petchaburi, Nakhonprathom, Prajuabkirikhan, Suphanburi, Ratchaburi, Samutsongkram, Samutsakorn, Chantaburi, Chachoengsao, Cholburi, Trat, Prachinburi, Rayong, Sa Kaeo, Samutprakarn) 5 Support budget to 56 network hospitals in 1,400,000 regional/province/district and community level for operation development and data collection in CCHD screening Total Budget 2,500,000

2017 1 Meeting with CCHD committee from network hospitals 1,050 2 Invited experts from network hospitals to share 371,950 knowledge about echocardiogram, MRI, CT scan, and cardiac catheterization to enhance academic knowledge and treatment innovation 3 Site visit to monitor and organize workshop training in 612,000 CCHD screening in 26 provinces ((Chiangmai, Udon Thani, Ubon Ratchathaini, Surat Thani, Songkla, Kamphangpetch, Chainat, Pichit, Nakhonsawan, Uthai Thani, Kanjanaburi, Petchaburi, Nakhonprathom, Prajuabkirikhan, Suphanburi, Ratchaburi, Samutsongkram, Samutsakorn, Chantaburi, Chachoengsao, Cholburi, Trat, Prachinburi, Rayong, Sa Kaeo, Samutprakarn)

4 Support budget to 33 network hospitals in 15,000 regional/province/district and community level for operation development and data collection in CCHD screening Total Budget 1,000,000

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6. Stakeholders

The initiative has been executed mainly by QSNICH and partners within the MOPH and others. There are seven parties involved in the CCHD Screening. Various sectors have been engaged in demonstrating the initiative. Detail shown in Figure 6.1

Figure 6.1 Stakeholders, Role and Engagement

Stakeholders Role and Engagement 1. The hospitals involved in − The very first group of hospitals research and development worked committedly to find the of the PO screening and appropriated protocol and technic pilot study of PO screening, meeting regularly and also cooperation in providing of PO screening to newborns including collecting data and interpretation. 2. The Royal Academy of − Executed the meeting to discuss Pediatrician of Thailand the benefit of and certified the PO screening as the recommended procedure that is prudential to add into the routine physical examination for all newborn in Thailand. 3. The public and private − Play the most important role in hospitals, implementing provision of the screening to all CCHD screening to reduce newborns nationwide, QSNICH has neonatal mortality in arranged the annually national Thailand meeting, scheduled site visits and training courses to empower them. The community of healthcare personnel who practice the PO screening in the 13 s actively uses social media channels, e.g. LINE groups, started by QSNICH and joined group too. Via these channels, those personnel in the same can exchange knowledge, consult and create relationship among each other.

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− Enable relationship and by satisfaction survey and collect their recommendation for improvement of the initiative. 4. Parents who have the new − need to know the importance and babies benefits of the PO screening which QSNICH and NSHO has planned to provide public communication regularly to create public concern and demand of the PO screening service. 5. DMS, MOPH − Provide budget to QSNICH for operating of the initiative annually and NHSO grant the budget of operation of the PO screening for hospitals in 13. 6. King Mongkut’s University of − Post-graduated Students of King Technology Thonburi Mongkut’s University cooperated with QSNICH’s expert in developing the innovative interpreting tool: the CCHD screening application for smart phone user. QSNICH’s relationship with the university has thus been a win-win situation with QSNICH receiving the application and the students learning being enriched. 7. − Cooperate with QSNICH in the development of the innovative web based evaluation program for all hospitals reported of their work into the system. And also function as database server place for the program. Being the partner with the same purpose to save newborn with CCHD in Thailand. They also joined the annual meeting regularly.

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7. Resources

QSNICH has received funding, technology and human resources support from several government agencies for its “CCHD Screening to Reduce Neonatal Mortality” initiative enabling it to provide an actual tangible service. The effort is a major national level undertaking that requires adequate technological and human resource sponsorship. The types of supported activities are as follows:

7.1 Operational Budget

• Hospitals in the Bangkok Health Region (Health Region 13th)

The National Health Security Office (NHSO) provide fund for the PO screening service to hospitals in Health Region 13th. The children found positive results for CCHD are transferred from those hospitals to QSNICH for comprehensive scheduled treatment.

• Hospitals in other 12 Health Region

QSNICH’s Center of Excellence in Pediatric Cardiology receives funding from the DMS, MOPH to perform screening at hospitals within the 12 Health Region out of Bangkok and uses the funds to organize CCHD training and maintain a network for screening of CCHD in infants in an effort to reduce the national infant mortality rate. QSNICH continues to advance its knowledge and expertise in congenital heart disease prevention and treatment along with visits, exchanges, academic seminars, and manuals on congenital heart disease screening for its provincial hospital partners in the 12 Health Region

• District Hospitals

QSNICH transfers the budget to regional hospitals and provincial hospitals to disseminate further the PO screening guideline and knowledge to district hospitals, which in turn expand the screening services to community hospitals.

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7.2 Information and Communication Technology

• Resource for Creation of Smart Phone Application

QSNICH initiated cooperation with King Mongkut's University of Technology North Bangkok (Prachinburi Campus) and gained support of programmer to develop a innovative interpreting tool as CCHD screening smart phone application. The application was made to make interpretation of the screening results more effective and to provide a guide for effective screening according to the national guideline. The application is available to hospitals across the country.

 Resource for Creation of the innovative web based evaluation system

QSNICH received strong support in developing a web-based evaluation system for patient registration and real-time evaluation as well as for information storage from the information and communication technology unit of Lampang Hospital, a very first partner, allowing it to expand its screening program to provincial hospitals across the country.

7.3 Human Resources

QSNICH has been solidly supported by the personnel of its partner hospitals. Key players of the initiative are the healthcare personnel worked in postpartum units who operate the PO screening completely and accurately follow the guideline in the PO screening manual. QSNICH also organizes visits, exchanges and yearly academic meetings to further disseminate information and enhance their screening skills.

The budget funded from DMS, MOPH was shown in Figure 5.1

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8. Monitoring and Evaluation System

After launching the application, QSNICH make sure that all the hospitals that joined the program would implement the screening accordingly. Therefore, we set up a monitoring system to supervise and support health care staff from network hospitals throughout Thailand in several ways. The initiative has been evaluated formally and systematically by QSNICH, representative of MOPH in three categories as followings;

1) The operational output

2) The stakeholders relationship focus on satisfaction and cooperation

3) The national neonatal mortality.

Portal of evaluation including

1. Information tracking on its program across s through visitation and direct briefings by its partners and network members, hearing any issues or obstacles and presenting solutions tailored to each hospital.

2. Develop the innovative web based evaluation system. The program has been developed using information and communication technology (ICT) for the operators to report of their work conveniently and has provided real time evaluation without burden of paperwork. Meanwhile, the data has been reported to DMS, MOPH every 3 months. It is a single national on-line data intake system allowing for immediate updates on screenings by hospitals and wherein abnormal cases can be easily flagged and identified for further coordination and effective forwarding of patients. The initiative has used this program to monitor the operational output.

3. Screening inspections have been performed at all participating hospitals nationwide through its shared online database, allowing for constant improvement of its congenital heart disease screening network and resulting in benefit to the nation’s newborns.

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4. A system for evaluating the efficacy and satisfaction towards its CCHD screening application so that it may continually improve the process and its practical use by hospitals in its network. The stakeholder satisfaction and cooperation have been measured annually using the satisfaction of the service providers regarding the innovative interpreting tools (the BB wheel and the CCHD screening application for smart phone), via an online free survey program each year. For the year 2017 the link to the survey is https://www.surveycan.com/survey184857 or QR code. The increasing amount of the operational results entered in the supporting system also represents the stakeholders’ or partners’ cooperation.

The evaluating system shows that the CCHD initiative has positively impacted the lives of newborns with CCHD in various ways. The indicators for evaluation assessment are

1) Operational output includes the number of hospitals, networking hospitals and provinces joining the program.

2) Number of newborns undergoing PO screening within 24-48 hours after birth

3) The number of newborns with positive PO screening;

4) The stakeholders relationship focus on Satisfaction of the BB wheel evaluating tool in 2015 and satisfaction of the CCHD screening application for smart phone, in 2016-2017;

5) National neonatal mortality which is the ultimate goal of the initiative has been measured and published by the third party organizations national and international, as MOPH and World Bank.

6) The ratio of NICU to newborn which has been also monitored by QSNICH the main organization in charge of the service plan which show the readiness of the facilities and manpower across Thailand in treatment of critical newborns for the same objective of decreasing neonatal mortality.

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9. Results

The initiative has significantly impacted on vulnerable newborn’s lives, especially those born with CCHD, based on the activities plan organizing in each fiscal year. The results after completing all the events have been listed below: 1. the increasing number of hospitals implementing CCHD screening from 4 to 208 within 5 years covering all the 13 health regions or 59 provinces across Thailand, allowing vulnerable newborns in remote areas to easily access the service and there is a good trend for partner cooperation. When CCHD screening via smart phone application has been launched, enabling the hospitals perform the screening more conveniently, the number of hospitals has grown rapidly over time, meaning that the service provision spreads to serve in many areas of the country and also represent good trends of partner cooperation. Figure 9.1 2. Number of hospital growth rapidly after the innovative CCHD screening application for smart phone has been launched. The newborn those gone through the screening also raised from thousand to hundreds of thousands each year means more children have been lives saving before it is too late and promote equality in access to the public service. Figure 9.2 3. Also the number of newborns with positive screening results shows the ability of health personnel in detecting the newborn who have risk and give them comprehensive treatment of CCHD in time to save their lives. Figure 9.3 4. The most important impact is the neonatal mortality has dropped gradually since it is the impact of many other factors related in national healthcare service plan for newborn from 8.3/1,000 live births in 2012 to 7.3/1000 live births in 2016 according to World Bank report. As this index is the global index so the third party as World bank report is recognized, instead of the data that published annually by MOPH. Figure 9.4

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Figure 9.1 Neonatal Screening

Figure 9.2 Number of Hospitals Implementing CCHD Screening

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5. The stakeholders relationship focus on Satisfaction of the BB wheel evaluating tool in 2015 and satisfaction of the CCHD screening application for smart phone, in 2016-2017 also show the excellence both innovative interpreting tools over the original guideline diagram. (Figure 9.5) In summary, the newly developed CCHD screening smart phone application was deemed both highly rated and economical, making it very suitable for use in hospitals throughout the country.

6. Ratio of NICU to newborn that decreased from 1: 731 in 2015 to 1:690 and 1:583 in 2016 and 2017 respectively showed that the NICU has been develop paralleled to realize to need of newborn with CCHD and be the cooperation between partners in newborn service plan for the good of all critical health status newborn. The great recognition of this initiative is to be awarded as the Public Sector Excellence: Health Service Innovation 2017 by Office of the Public Sector Development Commission (OPDC)

Figure 9.3 Number of Newborns with Positive Screening Result

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Figure 9.4 Neonatal Mortality Rate

Figure 9.5 The Satisfaction of the Innovative Interpreting Tools

The Satisfaction of Year % the Innovative Interpreting Tools

2015 Blue Baby Wheel 83.20

CCHD Screening Application 2016 92.82 Smart Phone Application

CCHD Screening Application 2017 91.25 Smart Phone Application

10. Obstacles and solutions

Before the CCHD Screening have been implemented successfully, the journey before its achievement was never easy. Many obstacles have occurred, but with experienced management team, and cross- functional team commitment from QSNICH and its partners, the solutions have been applied to solve such issues.

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Obstacles Solutions Burden of workloads  QSNICH has lessened their The initiative CCHD Screening to workload by using the information Reduce Neonatal Mortality in and Communication Technology Thailand is beneficial to all to reduce time of PO screening newborns with CCHD under the care operation and reporting system. of pediatricians. However, this  Integrated the initiative into could be mounting workload to national newborn service plan to existing medical and nursing staff, ensure all partner hospitals and since they have to perform the staff sense of belongings and screening within the first 24-48 willing to do the task. hours after birth for all newborns and also have to take care of their mothers. Negative attitude of health care QSNICH gradually change their workforce mindset by emphasizing on the They barely realized the importance most value of the PO screening that the importance and effectiveness of is its ability to significantly save lives the PO screening only realize the of newborns with CCHD and open adding on of workloads. the channel for them to share their success story in Line chat room and gain positive attitude which can sustainable change their mindset forever and ensure their willing to do the PO screening service Unofficially established as a QSNICH’s Center of Excellence in mandatory procedure Pediatric Cardiology has submitted a Although the initiative was initiated memo to the Royal College of under QSNICH, the public sector but Pediatricians of Thailand explaining the PO screening still not mandatory the benefits and necessity of CCHD in the context of medical services. Screening in the hopes the college Therefore, the PO screening needs will push for its inclusion among certification from the college of regular practices. Pediatricians to declare it is a mandatory service that should be provide to all newborns, and added into the routine physical examination for newborns.

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Obstacles Solutions Increased in management QSNICH sent the CCHD screening expenditures. proposal to National Health Security At present QSNICH has been Office (NHSO), NHSO Region 13 successful in dissemination of the (Bangkok) has accepted “Critical PO screening in all 13 health Congenital Heart Disease (CCHD) regions, which cover 59 out of 76 Screening to Reduce Neonatal provinces in Thailand. With more Mortality” as one of its programs hospitals joining the program each and lead the campaign to have the year, QSNICH has been requested hospitals within Bangkok region to for on-site knowledge transfer, case perform CCHD screening in consultations and cases referral, newborns using funding from the which leads to significantly high NHSO. QSNICH transferred travel expenditures of QSNICH and knowledge to regional hospitals in treatment expense of CCHD cases. all 13 health regions to empower In addition, with a limited number of them to become the chained human assets, providing training to hospital acting the centers for the hospitals that request to have supervise and give consults to other CCHD screening have been hospitals in that particular areas. additional loads of work to the This helps solving the problem of team, which exceeds the ability that exceeding expenditures cost and QSNICH can obtain. amount of work at QSNICH and support regional hospitals to help community hospitals in their areas.

11. Benefits and Mutual benefit

CCHD screening to Reduce Neonatal Mortality in Thailand is beneficial to health care service providers and receivers in many levels:

1. Benefits to vulnerable newborns and their families.

The implementation of CCHD screening enables newborns who suffered from CCHD throughout Thailand to be able to access CCHD screening. The initiative does not only help saving lives of newborns, but also increase life quality of the patients and their families. First of all, newborn who undergone CCHD screening within 24-48 hours after birth will be identified the abnormalities and congenital heart diseases earlier,

- 35 - and have better chance to receive treatment before the symptoms becomes more severe. The initiative leads to the reduction in the length of stay in the hospital, shortage of beds in NICU and medical treatment expenses and cost of transportation, especially for families who live in rural areas. When newborns are sent to the hospitals in critical condition, it may be too late for treatment and could lead to newborn death. Families who lose their beloved child can experience traumatic situation and suffer from psychological issues. The initiatives gives hope and fulfill life of vulnerable newborns and their families.

2. Benefits to health care staff

The CCHD screening initiative does not only benefit healthcare service recipients who are suffering from CCHD, but also benefit health care personnel in reducing workload and human error in misinterpretation of CCHD screening results. Using PO oximeter table to compare test result could be confusing due to memorization of too many numbers. The development of BB Wheel and CCHD screening application are handy, easy to access, convenient and giving accurate results, making pediatricians and nurses effectively provide medical procedures to newborns with CCHD. After providing the PO screening for a period time, it ability in truly ending preventable death of newborns with CCHD will reveal obviously to the operators, give them the enthusiasm and positive attitude to give all newborns the PO screening service or give the newborns a chance to grow up healthily and live their lives as the other kids do.

3. Benefits to health care partners at institutional level

When the initiative has been newly introduced to public, community hospitals, regional hospitals were unable to perform the CCHD screening by themselves. Therefore, newborn with CCHD cases from across Thailand have been referred to QSNICH causing the institute to experience shortage of beds in the ICU, inadequate staff, and significantly increased in medical procedures. Since NHSO provided funding to QSNICH to do the pilot project and disseminate the screening process through knowledge sharing to the hospitals in all 13 health

- 36 - regions, they are able to perform CCHD screening on their own. NHSO added this initiative into the health system, encouraging regional hospitals and community hospitals to implement the screening routinely. The number of emergency, severe or critical referred cases that have been sent to NICU at QSNICH has been decreased, as well as death rate of newborns in Thailand as a whole. Thus QSNICH is able to further disseminate the initiative and achieve all targets with in timeline.

4. Benefits to the government at ministerial level

The national neonatal mortality is the ultimate goal of the initiative which has been measured and published by the third party organizations national and international, as MOPH and World Bank. With the policy from MOPH to improve the life quality of Thai people, children are required to receive screening for various risks and improved health. This extends to checking for congenital heart disease which is an essential process due to the disease’s severe nature and risk to newborns. . The results showed that the “CCHD Screening to Reduce Neonatal Mortality” process provided faster diagnosis, accurate test results and early treatment thereby enabling the country of Thailand to lower the neonatal mortality rate for CCHD. Early detection of heart defects leads to the required proper monitoring and following up with pediatric cardiologists and establishing early treatment will also help decrease morbidity and mortality among these newborns. For the nation as a whole, the government budget for public healthcare provision has been reduced significantly since the initiative makes early detection of CCHD in newborns possible as opposed to delayed diagnosis which leads to acute death or critical health status that requires long term intensive care with death or disability a real possibility, which further burdens families and society. Moreover, the screening initiative is a preventive step that leads to costs lower than complicated treatment for late diagnosis.

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Mutual Benefit of the initiative

The improvement and the expansion of the CCHD screening initiative it generates shared value for mutual benefit to the parties that help with the initiative as follows:

1. The collaborations between network hospitals have increased the standard of health care procedures and increase the opportunity to lower mortality rate in newborns. The improvement of the service has been developed through knowledge sharing, and site visit. BB Wheel and application that have been distributed to medical personnel help saving time and enhance the effectiveness of interpreting the result of oxygen level in the blood, making the quality of the procedure more reliable and credible to the patients. The partner hospitals and QSNICH share the mutual benefit in this issue.

2. Bringing ICT into the process of web - based evaluation system and data collection has been useful for health care management of the country. Gathering feedback and measuring the feedback of the initiative helps improving knowledge transfer channel and support higher authority to operate the process more systematically. The partner hospitals and QSNICH share the mutual benefit in this issue too.

3. Equal access to CCHD screening is not only for medical staff to perform the procedure. It also provides opportunity for vulnerable newborns to receive the screening and further treatment, even though they are in remote areas or rural residence. This can empower operational skills of health care personal, since the initiative is easy to use by any trained level of staff and also enhance life quality of vulnerable newborns and their families to live a healthy and happy life. The government can claimed realization of the SDG10 targets10.3.

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12. Sustainability and Transferability of the Initiative

The initiative covered the three pillars of sustainability which are social, economic and environment. The initiative has been structured systematically to enhance its sustainability over time using strategies as followings

1. Research and development including innovation were involved to obtain appropriated protocol and technic within context of Thailand, which has been accredited from The Royal College of Pediatricians of Thailand as the prudential procedure that should be added into routine physical examination for newborns

2. Responding to National and International Problems

The initiative addresses the problem of national neonatal mortality by ending preventable deaths of newborns with CCHD and realizes SDG3 target3.2, 3.4. Even though newborns with CCHD are approximately 1,000 each year, but CCHD screening is prudential procedure worth to be done routinely in all newborns, due to the severe nature of CCHD and high risk of death in newborn.

3. Transferability in Building a Network for CCHD Screening across the country

Continuously promote equal access for newborns in remote areas to have equal opportunity to receive PO screening that aligned with SDG10 target10.3 QSNICH began implementing the CCHD Screening to Reduce Neonatal Mortality initiative in 2014. It organized CCHD training for hospitals in Health Regions 1, 8, 4 and 7 with 27 hospitals in the four regions initiating the screening. In 2015, the program was expanded to hospitals in Health Regions 2, 5, 9 and 11. The provincial hospitals that had already been performing the screening since the previous year, 2014, received sponsoring to hold their own training for district hospitals. They were able to reach up to 30 provinces. In 2016, the program was expanded to four more health regions, namely 3, 6, 10 and 12 and registration through a program was initiated. The number

- 39 - of hospitals performing the screening has grown continuously over the past three years.

4. Partnership Building for Further Expansion

Partnering with regional and provincial hospitals to gain support in manpower, empowering them by training their personnel to operate the screening and be instructors who give training for other hospitals, provide equal access to the service in the area of their responsibility and create CCHD screening network serving the vulnerable newborns all over Thailand for the good of our next generation

5. Impact on future generation

The initiative is public service, which really serves the most vulnerable group of newborns; those are future of their own, parents, families, societies, countries, and the world at large. Thus the initiative has future to serve the new comings of the world, ending preventable death of newborns with CCHD and save them for the future of their countries, these are even more important in the countries facing the aging population problem. The initiative also lessens the social and economic problems of individual, family, society and country level, due to bereaved of their beloved babies or indirectly reduce family disruptions and help preventing the consequences of social and economic problems due to newborns’ death, which often lead to psychological trauma or other mental disorder that may cause social impairment or even broken family. This problem can be found occasionally among bereaved parents who lost their beloved babies, lessen their ability in making family income lead to poverty and low quality of life in line with SDG3 target3.8 and SDG1 target1.1.

6. Directly affects government budget of the country as a whole, as financial expenses for healthcare provision of the treatment for newborns with early detected CCHD before revealing symptoms has been significantly reduced, comparing to the treatment for newborns with CCHD who received delayed diagnosis, develop severe symptoms and being in the critical health status, that need long term intensive care, and results may be death or disability, which further burden to the

- 40 - families and societies. The healthcare prevention is known to be less cost than the complicated treatment aligned with SDG3 target3.d.

7. Advancing public relations to highlight the need of the initiative, establishing its success have created awareness and public demand for CCHD screening in newborns as the basic needs and ensures social support for its sustainability. This promote SDG10 target10.3

8. Last but not least, the initiative was developed to be paperless and minimize resources consumption. Therefore, the environment sustainability factors of the initiative are

8.1 The innovative interpreting tool: CCHD screening smart phone application.

8.2 Web-based evaluation system for data collection and evaluation.

The web based evaluation system has been developed; a paperless system leaves the operators no burden of paperwork, only willing to do screening.

9. the initiative is the innovative policy and has been integrated into national newborn health service plan encourages MOPH to support training, material and budget resources in line with SDG3 target3.C

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13. Success story

Case 1: Pulse Oximeter Screening Saves Baby Adisorn By: Ms. Prawdao Panturut, Registered Nurse Queen Sirikit National Institute of Child Health, Bangkok, Thailand

A baby given the name Adisorn was born to a mother who had received oxytocic to stimulate contractions and facilitate childbirth at

Chom Bueng Crown Prince Hospital, . However, because her cervix would not open, she was referred to Ratchaburi Hospital for a cesarean section. At birth, Adisorn seemed normal and was very active. His skin was red - a good sign - and his breathing was normal. After the first 24 hours at birth, the attending nurse used the pulse oximeter (PO) to measure the level of oxygen saturation in the blood flow. When she attached the device to the end of baby Adisorn’s finger, she got a screening result of 98%. Then when she attached the device to the end of baby Adisorn’s toe, the screening result was 91%. According to the criteria, these screening results were abnormal. After the PO screening results, Ratchaburi Hospital referred baby Adisorn to the Queen Sirikit National Institute of Child Health (QSNICH) for further diagnosis. An echocardiogram was administered and the results showed that baby Adisorn had critical congenital heart disease

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(CCHD). His CCHD was caused by constricted carotid arteries, the vessels that directed blood to the lower portion of his body. When something like this happens, the heart cannot pump as much oxygenated blood to the lower part of the body. One of the results is that oxygen saturation at the toe is less than at the finger. This is exactly what the PO screening results showed: The oxygen saturation measured at baby Adisorn’s toe was 91%, less than the measurement at his finger. This difference in the oxygen saturation level in the blood flow is not something that can be observed by the naked eyes. If the nurse had not screened baby Adisorn with the pulse oximeter, he could have easily been sent home where he could have gone into critical condition and his life would have been at serious risk. But luckily, this was not the case. The pulse oximeter was able to find abnormal symptoms in baby Adisorn before it became too late. Thanks to the PO screening and diagnosis of abnormality before any visible symptoms came about, we were able to refer baby Adisorn to the Center of Excellence (COE) in Pediatric Cardiology for fast medical treatment. As a result, we were able to help this infant, baby Adisorn, and increase his chances of survival. It is quite obvious that screening for CCHD using a pulse oximeter (PO) is extremely beneficial for babies and their families. In the case of baby Adisorn, thanks to the screening, he was able to receive the required to treat his abnormality. He was admitted to the hospital for only seven days, a relatively short hospital stay. After the seven days, he was discharged and sent home to be with his family. Thanks to the CCHD screening using the pulse oximeter, now Adisorn is

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5 years old, he has been given the chance to life a healthy, quality life to the fullest and become part of the future of the nation.

Case 2: Embracing a New life By: Ms. Prawdao Panturut, Registered Nurse Queen Sirikit National Institute of Child Health, Bangkok, Thailand

This is the story of one baby delivered via C-section at Wiset Chaichan Hospital in Ang Thong Province. When the baby was first born, his skin was a good dark red. However, the nurses reported a positive reading from the Critical Congenital Heart Disease (CCHD) screening performed on the baby. The doctor in charge suspected heart disease and thus had the baby transferred to the Queen Sirikit National Institute of Child Health (QSNICH) for further treatment. A pediatric cardiologist at QSNICH conducted an echocardiogram for the baby from Ang Thong’s Wiset Chaichan Hospital. The cardiologist presented the grave results to the baby’s mother: The baby had critical congenital heart disease, specifically a blocked heart valve. This was obstructing the flow of blood into the lungs for purification. However, the baby’s body had formed extra artery (patent ductus arteriosus, PDA)

- 44 - which was what was keeping the baby alive. If the extra artery were to contract and close off, the baby might face sudden cardiac death. QSNICH provided emergency treatment for the baby. This included cardiac catheterization; perforate the impasse valve, and inserting stent in the extra artery that was keeping the baby alive. Six months later, doctors performed surgery on the baby to complete the final steps of the treatment. The baby’s mother informed QSNICH’s pediatric cardiology team that she was so happy that her baby had received the pulse oximeter screening. This CCHD screening technique made it possible to discover her baby’s heart disease. As a result, the baby had received immediate targeted treatment. Today, the baby is thriving, happy, and playful and is loved by all his family. He continues to see the doctors who treated him regularly. His mother has said “I am so thankful for the pulse oximeter and for the CCHD Screening to Reduce Neonatal Mortality initiative. Every hospital should have this very beneficial screening service for all newborns.”

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Case 3: A Nurse’s Heartfelt Story By: Ms. Sukanya Promsurin, Registered Nurse Phra Nakhon Sri Ayutthaya Hospital, Ayutthaya Province, Thailand.

I work at Phra Nakhon Sri Ayutthaya Hospital. My hospital joined the Critical Congenital Heart Disease (CCHD) Screening to Reduce Neonatal Mortality initiative because we have a lot of babies in our care each year. The post-natal department is directly responsible for only normal healthy babies. However, the neonatal CCHD screening has revealed babies that appear completely normal but do in fact have CCHD that has yet to display any symptoms. These babies need constant monitoring and further medical examination. This proactive screening initiative identifies newborns with congenital heart disease. Therefore, it ensures that affected babies are diagnosed and receive treatment fast. Consequently, possible complications and the danger that heart disease can cause are both greatly reduced for these babies. This is very crucial because these newborns are the “apple” of their parent’s eyes and the future hope of their families.

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At first, this screening was new to us at the hospital and was an added responsibility. I was not happy with this job because it just meant I had more to do. But when we discovered babies with heart disease and were able to get them the necessary treatment, my feelings changed. Thinking back, if we didn’t have the CCHD screening, we wouldn’t be able to diagnose these life-threatening conditions in the babies. Think what might happen for undiagnosed babies who go home to be taken care of people who are not medical professionals. If their condition changes, for instance they become tired or turn blue, their caretakers won’t understand and won’t know what to do. And the baby may end up dying before being diagnosed for CCHD. Fortunately this doesn’t have to happen thanks to the innovative screening. As a result, many infants, like the one I’m about to describe, receive timely treatment. A one-day-old baby boy whose external physical appearance was perfectly normal was screened for CCHD. The readings were positive, which meant he had abnormalities. He was transferred to the Queen Sirikit National Institute of Child Health (QSNICH) for an echocardiogram when he was 6 days old. The procedure showed that his heart was on the right side and that he had only one valve in his heart. Follow-up appointments were scheduled for every two months and the department would call the family up regularly to check if the baby was turning blue or showing other abnormalities. These follow-ups indicated the baby was strong, breastfeeding well, and not blue. At 8 months, the surgeon had a valve conduit implanted connecting his heart the lungs. After the surgery, the baby was able to eat and play normally. He is now 2.7 year old and has undergone

- 47 - cardiac catheterization in preparation for another surgery at QSNICH. Since then, we have called the family regularly to keep abreast of the baby’s condition. With everything going well for the baby, I am very proud to have been a part of saving this baby’s life.

Case 4: A Baby Who Was Saved Before It Was Too Late By: Ampornrat Butmart, Registered Nurse Loei Hospital, Loei Province, Thailand

After the Queen Sirikit National Institute of Child Health (QSNICH)’s Center of Excellence in Pediatric Cardiology joined hands with Thailand’s Health Region 8 in May 2014, Loei Hospital was sponsored with one pulse oximeter. At first, all of us on the Loei Hospital team felt that this was just one more burden being added to our already heavy workload. But we had to do it because it was a hospital policy. So we set up a system to screen all of the newborns delivered at the hospital and register their information during the fiscal years of 2014, 2015 and 2016. “We screened 3,748, then 3,852 and 3,982 babies, respectively. Through this work we successfully diagnosed 5 children with abnormalities and then sent them for further treatment with better

- 48 - equipped facilities. Thanks to the Critical Congenital Heart Disease (CCHD) Screening to Reduce Neonatal Mortality initiative, we have been able to identify CCHD babies in a much more timely manner and get them the care they need before it is too late. But more importantly, something unexpected yet very beneficial happened. The CCHD screening has made it possible for us to also detect neonatal sepsis and congenital pneumonia. Now, our pediatric team can better tackle the problems of sick babies before they are discharged and sent home. Before the CCHD screening initiative, we had undiagnosed babies whose condition would become so critical after returning home that they had be taken to a nearby hospital for a tracheotomy and a breathing tube. Just as bad is that their families would have to make the long and difficult trip over mountainous terrain to take them to the larger Loei hospital for further treatment. After implementing the CCHD screening initiative, we began to realize just how beneficial and extremely significant the initiative is, which is why we continue to proudly provide the screening and have expanded our CCHD screening network to cover all of Loei Province’s community hospitals.” A working mother in Loei Province gave birth via Caesarean section after a full-term pregnancy to a beautiful baby boy on May 25, 2017. Weighing 3,500 grams and appearing healthy, the baby and his mother were moved to a private hospital room to await discharge. Before returning home, the baby was screened for CCHD at the children’s ward. However, his screening results did not meet the SPO2 89-90% requirement even after two screenings. The mother and family were quite shocked when they were informed because to them the baby

- 49 - looked perfectly normal. The relevant physicians further assessed the infant and prepared to treat him for neonatal sepsis by having him moved to the neonatal intensive care unit (NICU). After a C-reactive protein (CRP) reading of 1.3, additional treatment in the form of O2 high flow and antibiotics was administered. In the morning of May 26, 2018 - just one day after being born - the baby was sent for an echocardiography at and diagnosed with severe congenital heart defects including pulmonary stenosis (PS), patent foramen ovale (PFO), and patent ductus arteriosus (PDA). He was sent back for sepsis treatment in Loei Province for one week. After that, in the first two weeks, he was transferred to the Queen Sirikit Heart Center of the Northeast in Khonkaen Province where doctors performed a percutaneous balloon pulmonary valvuloplasty (PBPV) on June 12, 2017. After a hospital stay of 3 days for the baby, the doctors were happy to report that no complications had occurred and, after two follow-up appointments, no other medical procedures were required.

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Case 5: CCHD Screening Saves a Baby from Myanmar from Life- Threatening Conditions By: Wichittra Wongwatcharaphan, Ratchaburi Hospital, Ratchaburi, Thailand

On July 3, 2015, a baby boy of Myanmar nationality was delivered by caesarean section because his mother’s cervix did not dilate. At birth, he weighed 3.08 kilograms and appeared healthy and active. No apparent blueness could be seen in the ends of his fingers or toes and he was able to breastfeed 24 hours after being born. So, he appeared, to the naked eye, to be perfectly normal. But the critical congenital heart disease (CCHD) screening results showed otherwise. Using a pulse oximeter (PO), the nurses found that the oxygen saturation at the baby’s right hand measured at 96% with a perfusion index or PI of 2.1, PI being an indication of the pulse strength at the point where the PO is attached. The PO reading on the baby’s right foot was 81% oxygen saturation with a PI of 2.8. Based on CCHD screening criteria, these results were interpreted as being positive, meaning that the baby had at least one abnormality. The pediatrician was informed and further assessment was conducted for more in-depth diagnosis. An echocardiogram showed that the baby had not one, but 3 types of

- 51 - congenital heart defects, namely patent ductus arteriosus (PDA), severe pulmonary hypertension (PHT), and patent foramen ovale (PFO). Because of this serious diagnosis, the baby was transferred to the neonatal unit for treatment. Soon, his breathing increased from 56 breaths per minutes to 90 breaths per minute. Moreover, the oxygen in this blood was at 70%. The doctor thus ordered endotracheal intubation (which involves inserting a tube through the mouth down into the trachea) to help the baby breathe. He was then moved to the neonatal intensive care unit (NICU) for special care. Once his condition improved, the tube was removed and he was transferred back to the neonatal unit. After a total treatment time of 10 days, the baby was finally discharged from the hospital. However, before he was allowed to go home, he was given a final checkup. The results showed that he was fine and that no follow up appointments would be necessary. Thanks to the CCHD screening process, the nurses were able to provide early detection of the baby’s serious heart conditions. Consequently, he received the necessary treatment and was able to return home with his family to live out his life. There are many lessons to be learned from this case. The symptoms and signs of the baby didn’t indicate heart disease. At birth, he was even classified as quite active. If the pulse oximeter hadn’t been used and he hadn’t been given the CCHD screening or if his mother had given birth in a hospital that didn’t provide CCHD screening, he could have gone home to die unexpectedly with no one ever knowing the cause of his death. If it weren’t for the pulse oximeter, this could be the case for so many other children with unrecognized or undiagnosed CCHD. Luckily this wasn’t the case for this baby from Myanmar who is

- 52 - now thriving as a 2 year and 7 month old toddler. And, finally, thanks to the Queen Sirikit National Institute of Child Health (QSNICH)’s Critical Congenital Heart Disease (CCHD) Screening to Reduce Neonatal Mortality initiative, all babies in the country will be screened for CCHD and have the chance to grow up and contribute to society and the world at large.

14. Lesson Learned

As the learning gained from the operation and management of the initiative “CCHD Screening to Reduce Neonatal Mortality in Thailand”, we have learnt many valuable lessons over time. The initiative’s key lessons learned are as followings:

1. The initiation needed to be developed on the basis of clear vision and focus on the target group: vulnerable newborns, and make sure it meets their needs, not our own. The needs to have better quality of life and equity in service access have been met with the participation of health care partnerships from various sectors across Thailand have addressed national and global problem and realized sustainable developmental goal. This provides motivation and encouragement to all stakeholders,

2. In the informative age, using ICT involved in the operations, evaluation, and communications can accelerate the growth of the initiative significantly because it can bridge social gaps and life style of the new generation workforce and make the connection to remote area easier. ICT tools also play the major role in the process: ease transferring of the model; sharing knowledge and lessons learn among

- 53 - workers, enhancing partner relationship which is very important and distribute service knowledge to the public effortlessly which leads to an increasing of access equality in public service.

3. The managements must be informed and aware of the program and its impact. With the support of higher authority, the process will be operated more systematically and provision of the budget and material will be granted regularly to improve the program everlasting.

4. Healthcare personnel nationwide who relevant in the program need to commit to end preventable deaths of newborns with CCHD. Their willingly provision of the PO screening to all newborns is important to the effectiveness of the initiative.

5. Creation of strategic and operational plan including and operate the program as plan including monitor & evaluation regularly and continuous quality improvement of the initiative to ensure its sustainability and transferability.

15. Future Challenges

The challenges of the initiative at the end of the Twelfth National Healthcare Development plan in 2019 are to

1. Expand the PO screening service in newborns to 100% of hospitals providing newborns delivery in Thailand.

2. Have the formal MOU with NSHO to support the operational budget to all hospitals providing the PO service in all 13 Thailand’s health zones as in health zone 13.

3. Have at least 60% of newborns in Thailand receive the PO screening within 24-48 hours after birth. At present, even the CCHD screening has been implemented across Thailand, but only

- 54 - approximately 20% of newborns received the screening each year. It is our goal to improve the operating system, encourage hospitals at every level to make sure that every newborn undergo PO screening.

4. Improve data input of the evaluation system since the program is not user friendly and encourage healthcare personnel to fully report to the system. This will have an effect on the evaluation of the effectiveness of the initiative. The evaluation and report system may be more attractive and gain more attention only if the data from CCHD mobile application were automatically transferred to the evaluation system. Technically, it is still difficult but we are working on it.

These will confirm the true success of this innovative public service “CCHD Screening to Reduce Neonatal Mortality in Thailand” and the realization of Thai government, Ministry of Public Health to the Agenda 2030 Sustainable Development Goals and Targets as; SDG3, target3.2, 3.4, 3.8, 3.c and 3.d; SDG1, target 1.1; and SDG10, target 10.3.

16. Acknowledgement

We would like to express our heartfelt appreciation to all parties who take parts in making the implementation of the initiative possible, those who have been at our sides from the beginning and fight with us along the way, this includes QSNICH medical team for their dedication on experience sharing through site visit, in-house training and case consultation. Our network hospitals and healthcare staff who give their afford to perform the screening, and act as the main healthcare providers that operate the screening in their health zones. Also, the Department of Medical Services, Ministry of Public Health and National Health Security Office for financial support on the initiative. The Royal Pediatric Association that see the importance and advantages of the CCHD Screening towards vulnerable populations. Newborn Service Plan that adopted the PO screening into routine physical examination, making

- 55 - it mandatory for health personnel to perform the initiative after 24-48 hours of delivery. Without these contributions, the CCHD Screening to Reduce Neonatal Mortality in Thailand initiative would not have been possible.

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