Guiding principles

This section of this article is based on the experience at The Amrita Hospital in Southern India. The Amrita Hospital has demonstrated that accessible and affordable care in a resource-limited environment does not require a significant compromise in quality (Figure 1). One fundamental requirement is for every team member to develop a mindset that seeks to understand the socio-economic background of the family of every child. ^{Reference Kumar4} This understanding enables cost consciousness at every stage in the care of the child. A second fundamental principle is that individual team members need to multitask. While the prevailing model in Top North American Hospitals of highly specialised care for each of the areas within paediatric cardiology enables exceptional quality of care, it is largely unrealistic in most low- and middle-income settings because of the substantial shortfall of trained manpower in these regions. Over the years we have developed a model at Amrita that seeks to provide the best possible quality with the available manpower (See Table 1). In most circumstances, it is realistic for a paediatric cardiologist to perform non-invasive imaging and invasive procedures, assist in critical care, and interpret common arrhythmias at the bedside. This multitasking enables programmes to be facile and efficient. ^{Reference Kumar4}

Figure 1.

Accessible and affordable care without compromising quality.

A number of systems that are essential to good outcomes cost very little and yield a high return on investment. These systems and programmes include:

• establishment of a robust infection control programme, ^{Reference Singh, Kumar, Sundaram, Kanjilal and Nair5}

• implementation of a surgical safety checklist,

• the continued education and empowerment of nurses, and

• the creation of forums for communication amongst individual team members, enabling cohesion among members of the team and proactively minimising conflict.

Carefully considered decision-making is necessary with relation to the possible acquisition of new and expensive technologies. For example, the acquisition of hybrid operation-catheter laboratory suites or equipment for robotic surgery is likely to make a significant impact for a small proportion of procedures and patients, but is simultaneously likely to increase substantially the overhead costs for all procedures.

Perhaps the most controversial aspect of delivering care amidst cost constraints relates to case selection. A reluctance to perform complex multi-stage palliations in the face of uncertain long-term outcomes is present in most low-income countries and many middle-income countries. Examples include “high-risk“ functionally univentricular palliations and also unifocalisation for complex forms of tetralogy of Fallot with pulmonary atresia. These decisions must be carefully tailored, depending on both the clinical condition and socio-economic realities. ^{Reference Duignan, Ryan, O’’Keeffe, Kenny and McMahon6}

Finally, it is essential to use an inclusive definition of progress that prominently incorporates access to care. Defying traditional outcome-based metrics, this mindset would emphasise the notion that true progress is perhaps made only when the vast majority of children in the region have access to comprehensive paediatric cardiac care. ^{Reference Kumar7}

Key elements of building paediatric cardiac centre of excellence

The most important step in building a cardiac centre is obtaining “buy-in” across the organisation about the value of developing a programme focused on paediatric cardiac care. This “buy-in” requires a shared vision of making an impact on children with acquired and CHD in the region. Embarking on this mission requires clear, consistent, and candid communication from the programme leadership. An extremely compelling argument that supports the investment in paediatric cardiac services is the collateral benefits of improving quality across other paediatric specialties through establishment of robust systems in multiple other domains, including:

• infection control,

• transfusion medicine and blood banking,

• newborn and infant transport, and

• improved quality of nursing and intensive care.

It is also essential to introduce cultural changes from the traditional hierarchical model that exists in the environments of many low-income countries and middle-income countries to a model of shared accountability across diverse health care professionals. The empowerment of nurses and the promotion of continuing medical education are critical steps towards this direction.

Partnering with established paediatric cardiac programmes in the west and the creation and utilisation of networks enables rapid learning of best practices that will ultimately need to be adapted and tailored to local realities. An excellent example is the partnership with International Quality Improvement Collaborative for Congenital Heart Disease that has facilitated significant improvements in numerous programmes in low-income countries and middle-income countries in 37 countries across the globe. ^{Reference Jenkins, Castañeda and Cherian8} The paediatric heart programme at the Amrita Institute of Medical Science and Research Center has been a member of the International Quality Improvement Collaborative for Congenital Heart Disease since 2010. This requires every partnering programme to maintain institutional database that is externally audited by the International Quality Improvement Collaborative for Congenital Heart Disease. This has enabled publishing surgical outcomes that compare well with North American databases. ^{Reference Reddy, Kappanayil and Balachandran2,Reference Bayya, Varghese and Jayashankar3} Similarly partnering with non-governmental organisations such as Children’s HeartLink can facilitate targeted improvements in quality of care. While joining large databases such as the International Quality Improvement Collaborative for Congenital Heart Disease [https://childrensheartlink.org/iqic/] and The World Database for Pediatric and Congenital Heart Surgery [https://www.wspchs.org/world-database/world-database-for-pediatric-and-congenital-heart-surgery] enables periodic assessment of local outcomes benchmarked against aggregate global outcomes, it is equally important to create a culture of periodic introspection through regular internal meetings.

Structured training programmes that are carefully targeted to developing a multidisciplinary cadre of professionals are vital to the sustainability and scalability of whatever is accomplished in the centre of excellence. Efforts to retain these skilled and trained individuals in the local community are also critical to sustainability and scalability.

Finally, every programme needs an overarching structure of leadership that proactively seeks to accomplish multiple goals, including ^{Reference Kumar9} :

• ensuring harmony within the team,

• developing and pursuing a strategic vision, and

• liaising with the institutional administration.

Overcoming common challenges in low-resource environments

Creation of a new paediatric cardiac programme presents many significant challenges. First, large numbers of patients can overwhelm a centre with limited resources. This challenge requires a pragmatic approach in the initial stages, with gradually building systems to strengthen the programme. For this reason, it is reasonable to not attempt challenging cases in the early stages. In our programme, for instance, we did not attempt neonatal cardiac surgery until 6 months after starting the programme. It is worth investing heavily in the training of nurses in the initial stages of the programme, recognising the pivotal role of nursing care in every aspect of paediatric care, and especially in paediatric cardiac care.

Co-morbidities . A number of co-morbidities tend to complicate the management of patients with paediatric cardiac disease in the environment of low-income countries and middle-income countries. Undernutrition and infection are often the most common among these unique and challenging factors. ^{Reference Argent, Balachandran, Vaidyanathan, Khan and Kumar10} These challenges require a nuanced approach. We have shown that it is possible to correct common cardiac defects and obtain good outcomes irrespective of nutritional status. ^{Reference Reddy, Kappanayil and Balachandran2,Reference Argent, Balachandran, Vaidyanathan, Khan and Kumar10,Reference Vaidyanathan, Roth, Rao, Gauvreau, Shivaprakasha and Kumar11} Therefore, we believe that weight thresholds for correcting common left to right shunts like ventricular septal defects are not indicated. Bloodstream sepsis in neonates and pneumonias in infants can complicate management and should be thoroughly investigated and addressed prior to surgical correction. ^{Reference Reddy, Kappanayil and Balachandran2,Reference Vaidyanathan, Roth, Rao, Gauvreau, Shivaprakasha and Kumar11,Reference Gunasekara, Moynihan and Sudhakar12}

Late presentation. Late diagnosis and referrals bring a unique set of challenges and problems. It is critically important to develop standardised protocols for assessment of patients with pulmonary hypertension. ^{Reference Viswanathan and Kumar13} Severe hypoxia may necessitate palliation in selected patients with cyanotic defects prior to surgical correction. ^{Reference Lingaswamy, Koepcke and Krishna14} Systematic challenges of late presentation can only be addressed by improving awareness and working toward transformation of primary care. ^{Reference Nair, Zheleva, Dobrzycka, Hesslein, Sadanandan and Kumar15} Universal screening with pulse oximetry and prenatal diagnosis can greatly improve the condition of neonates with CHD by ensuring very early diagnosis and prompt referral and treatment. ^{Reference Nair, Zheleva, Dobrzycka, Hesslein, Sadanandan and Kumar15,Reference Wong, Fournier and Fruitman16}

Financial Sustainability: A significant proportion of patient care costs in many Low and middle income countries (LMIC) programmes are out of pocket expenses borne by patient’s families with serious economic consequences. While philanthropic funding from charitable foundations can supplement or supplant costs in selected cases, it cannot be a consistently reliable source and is hard to sustain. Private insurance is poorly developed and can only be afforded by a small fraction of the population. Ultimately robust financial sustainability will require the government to step in through population based programmes. ^{Reference Raj, Paul and Sudhakar17} This requires sustained advocacy, coordinated efforts and substantial political will.

The absolute burden of paediatric heart disease in the low resource environments of low-income countries and middle-income countries is massive, and it is only recently that an attempt is being made to address this issue through establishment of centres of excellence. These centres serve as sites for

• the development of protocols of management that can be applied elsewhere,

• contextual research, and

• building of capacity through structured training programmes.

Such centres of excellence in resource limited settings have the potential to play a critical role in improving the outlook for a majority of the children with cardiac disease in the world in the coming years.

A learning culture

One of the most powerful determinants of improving a service is the strength of its culture of learning. ^{Reference Braithwaite, Herkes, Ludlow, Testa and Lamprell20} We can consider organisational culture to be the beliefs, values, and assumptions held within the organisation. These tenets drive behaviour which in turn determines results. If we wish to improve our results, we need to reflect and define the culture and then proceed to negotiate and model behaviours. The leadership of the team and its members should work actively to create and nurture a culture of learning based on trust ^{Reference Lencioni21} and psychological safety. ^{Reference Edmondson22} Without a strong culture of trust and elevated levels of psychological safety to explore the inevitable failures that occur in every organisation, then we will never optimally learn. ^{Reference Edmondson23,Reference Edmondson24} An important outcome from this elevated level of psychological safety will be the opportunity to create open, transparent forums for quality review and empowerment of nursing which, as has been discussed, are essential to the enhancement in care everywhere.

Partnerships

As we learn to improve the care delivered to patients, we must strengthen our partnerships with our stakeholders ^{Reference McMahon, Hickey, Nolke and Penny25} :

• our patients,

• their families, and

• our professional colleagues.

The traditional paradigm in healthcare is that the large academic centre is the gold standard for care and is where the most talented physicians practice. This traditional “ivory tower“ has been replaced by a new paradigm based around service, as now the most valued care includes a more personable, convenient, efficient, and communicative environment. And so, if we truly want to innovate in healthcare, if we truly wish to learn, we need to peer beyond the walls of our healthcare institutions and form true partnerships with our community. ^{Reference Elrod and Fortenberry26} This outwardly looking perspective, based on a spirit of service will not only facilitate earlier referral to cardiac centres of excellence in resource-limited environments, but will facilitate better holistic care for the patient with complex multi-system disease in better-funded health systems. The importance of such partnerships within our systems is becoming an issue of increasing importance in the setting of subspecialisation of care as the numbers of subspecialists providing input to the care of an individual patient progressively increases.

Data

Developing a learning healthcare system requires access to timely clinical and patient experience data. ^{Reference Keeney, Kumar, Erler and Karmarkar27} Few health care systems exist in which this level of responsiveness has been developed. All too often what occurs is that clinicians provide data to a centralised administrative data set and the data returns to them in the distant future in a format that is not applicable for treating the patients at the bedside. As a result, the term “data rich, information poor” exists. Hope exists for developing meaningful and timely information arising from the electronic health record, although significant further improvements will need to occur over the next decades. ^{Reference McMahon, Hickey, Nolke and Penny25} An important opportunity from the big data movement includes visualisation of this information in real time, so that we can extract actionable insights. ^{Reference Benke and Benke28,Reference Kroeker29}

Incentives

Central to the creation of a learning healthcare system are the incentives for inducing change. The comfort of established approaches to patient care, the organisational silos, and competing priorities developed over decades need to be overcome with incentivised opportunities for learning and improvement. Incentives need to be developed in a way that provides advantages to the organisation beyond a simple return on investment, but also in terms of reputation and the presence of the organisation in the community. Payers need to be incentivised to support the acquisition of appropriate evidence and its use as they help to drive improvement, ^{Reference Bolen, Beverly and Khoury30} while clinicians at every level must be supported to work in innovative teams with high levels of psychological safety and with explicit plans for their professional development. As discussed, buy-in from hospital leadership is a crucial step in the successful development of an integrated care facility for patients with complex disease, whether this complexity results from delayed presentation, poor nutrition or coexistent infection, as has been described above in the patient presenting to a centre in a resource-limited environment or one with coexisting extra-cardiac or genetic abnormalities, who present for care to resource-appropriate centres. Our patients and their families must be supported as they work with professionals towards new models of care, which will ultimately provide better outcomes and experience for them and their loved ones.

Building a successful CHD Network

Over the past 10 years, we have developed a paediatric cardiology and cardiac surgery network on the island of Ireland, with the common goal of building a world class patient centred clinical service. The aim is to build a service that provides all the care needed to patients and families right through the journey from antenatal diagnosis to the stage of transition to services for adults with CHD. It has been a major challenge developing a clinical network across two political jurisdictions with different healthcare systems on both parts of the island of Ireland. This obstacle has been overcome by keeping the focus on getting the best care for the patient regardless of their place of birth.

The network model which has evolved has been designed to incorporate all the elements highlighted in Figure 2. That experience has highlighted the importance of having a cooperative structure; and therefore, we have structured our network model as summarised in Figure 3.

Figure 3.

Structure of the All Island CHD Network.

The All Island CHD Network Board has an oversight and strategic direction role only. The clinical aspects of the service delivered by the network are guided and shaped by the clinical advisory group, service delivery group, and family engagement group in a partnership, rather than a hierarchical model.

A vital element is that the structure makes best use of the pooled expertise working across the participating organisations. When making major changes to the way in which a service is delivered, it is vital to include all stakeholders in the process. In our experience, one of the most beneficial elements was to include the effected families as an integral part of the structure in the “Family Engagement Group”.

In 2011, the “Safe and Sustainable” review of children’s congenital heart services in the United Kingdom ^{Reference Brawn32,33} recommended Paediatric Cardiac surgical services being concentrated in centres providing 400 surgeries per year delivered by a TEAM of four surgeons. Twelve years later, very few centres have been able to achieve this goal. Our All Island CHD Network delivers 450 surgical procedures per year and more that 600 catheter procedures. Further key elements of the network are:

1. 1. Establishment of 5 centres (Figure 4) having a paediatrician with specialist expertise in paediatric cardiology, supported by clinical cardiac physiologists and paediatric cardiac nurse specialists.

2. 2. All-Island training programme for paediatric cardiologists with rotation between the major centres.

3. 3. Building a strong collaborative research programme on an all-island basis.

4. 4. All-island educational courses for postgraduate nurse training.

5. 5. High quality Informational Technology systems to facilitate case discussion and image exchange.

6. 6. Joint hosting by the network of international paediatric cardiology conferences.

Figure 4.

Location of centres in Ireland in the All Island CHD Network. *Other outreach centres also exist in Letterkenny and Sligo in the Republic of Ireland.

The model of specialist cardiology centres working in a network arrangement with local cardiology centres having paediatricians with specialist expertise in paediatric cardiology is now also well established in England. Examples of this approach include the South-West Network and the East Midlands Network.

A definite advantage of working in a collaborative network is that we have seen the “collective intelligence” of all professional groupings improve as a result of the interaction. Key to this has been joint participation in case management discussions. In addition, the development of shared training and teaching programmes harnesses and enhances educational expertise and builds relationships. This educational collaboration in turn helps develop the sense of community that is vital to the maintenance of productive working relationships. The benefits of this type of “Learning Health System” have also been highlighted by Bowker and colleagues. ^{Reference Bowker, Stelfox and Bagshaw34} Anderson and colleagues ^{Reference Anderson, Brown and Lihn35} reported the effectiveness of a learning network in achieving reduction in mortality for children with hypoplastic left heart syndrome in Canada.

To be successful, a network must bring clear benefits to all the institutions and staff working within it, as well as to the patients under their care. One of the tensions than can occur in such networks is that staff in the “smaller” partner hospitals may fear the loss of skills and the disintegration of the service in their institution. It is here that mutual respect and reciprocity are crucially important. A process of building professional relationships and trust takes time and requires strong leadership with a clear vision of what the shared purpose is.

There is also often anxiety and strong resistance from parent groups who have a strong allegiance to individual hospitals and clinical teams and are fearful of change.

Clinical networks developed to provide patient care also provide opportunities to collaborate on research. Establishing a shared research programme working in parallel with and integrated into the clinical service brings mutual benefits to both.

Technology

Working across different paediatric cardiology centres in a network arrangement requires efficient exchange of data including imaging. It also requires frequent videoconference calls for case discussion. Therefore, a properly functioning Paediatric Cardiology Network needs to be underpinned by high quality reliable and safe Information Technology systems.

Telemedicine links to provide remote diagnosis for newborns born at peripheral centres within a paediatric cardiology network are an extremely valuable addition to the clinical care package. In our service we have an ongoing research interest in the applications of telemedicine to the diagnosis and home monitoring of infants with major CHD and have integrated those applications into daily clinical practice to good effect. ^{Reference Casey36–Reference McCrossan, Grant, Morgan, Sands, Craig and Casey38}

Opportunities for research and training

Networks may also afford the opportunity to enhance training and education of doctors and allied healthcare staff, including the potential for interdisciplinary or collaborative learning. ^{Reference McMahon, Tretter and Redington39–Reference McMahon, Heying and Budts42} Clinical networks that bring together institutions across regions or countries enhance the opportunities to involve greater numbers of patients in multi-centre studies. Key benefits of this collaboration are the development of databases and data sharing across centres, greatly enhancing the power of research initiatives. A number of such CHD research networks exist in the United States of America and Canada, ^{Reference Dallaire, Battista, Greenway, Harris, Jean-St-Michel and Mackie43–Reference Sadhwani, Sood and Van Bergen46} but they are less well developed in Europe.

Lessons learnt from the All Island CHD Network

Strong clinical leadership with a commitment to and belief in the benefits the network can bring is the key to success. Particularly in the early stages of establishing a network, the leadership must be resilient to setbacks and the resistance to change.

This success of the leadership of team can only be achieved by building strong personal relationships with people in key clinical and managerial roles. Haines and colleagues in 2018 ^{Reference Haines, Brown and Craig47} studied the key features of successful clinical networks in Australia, and they concluded that leadership and effective network management encompassing both strategic and operational elements were central to success. Several papers about the Canadian experience of clinical networks have highlighted as key issues ^{Reference Brown, Patel, McInnes, Mays, Young and Haines48–Reference Manns and Wasylak50} :

• leadership support,

• multilevel engagement,

• alignment, and

• coordination with clinical, research and community partners.

Another key element is building trust across the network partners. The building of trust depends on good communication that is inclusive of all disciplines working in the care team, coupled with a culture of mutual respect. It is vital that all participants in the network can see the benefits, as opposed to being “threatened” by the proposed partnerships.

The flow of services in a true network arrangement should not be in one direction only (towards the larger institution); instead, each participating institution should be encouraged to build local expertise in key areas, so that they add value to the arrangement. This arrangement brings about sustainability to the partners involved. In this context, clearly defined service level agreements are essential.

In the Irish context, we have also learnt that engagement with and involvement of the parents using the service in the planning and establishment of the network structures helps shape them in a way that deals with concerns and anxieties about change. This parental engagement is particularly important in the setting of people coming from different cultural and political backgrounds.

The sense of community within a network takes time to evolve and is built on the basis of the following concepts:

• personal working relationships growing out of working together in patient care and

• developing new ways of working.

Sharing of teaching and training across all professional groups enhances the sense of unity.

In our experience, shared workshops and conferences that include a social element help foster the sense of belonging to the network.

Benefits of networks

Effective networks are increasingly important in the care of children with CHD, particularly as treatments become more specialised and the population of patients consists of more surviving patients with complex CHD.

Working within networks allows for pooling of resources, but also needs to be supported by adequate funding for staffing and infrastructure. The All Island CHD Network in Ireland owes at least some of its success to the investment of funds in staffing and infrastructure from the health departments in both Northern Ireland and Republic of Ireland. A further benefit is the opportunity for improved governance and ongoing quality improvement initiatives.

Finally, the increased Collective Intelligence across the care team drives innovation and research. Any world class clinical service must be integrated with a strong culture of research and innovation, and this generation of new knowledge will feed through to improvements in patient outcomes.

Properly constructed and resourced networks will enhance the outcome for patients with CHD and their families. Good clinical leadership that facilitates inclusion of all disciplines and service users in shaping the care delivered, coupled with a culture of innovation and research, is the key to success. In the context of CHD, the aim should be to create a network that can safely deliver as much of the package of care as close to the patient’s home as possible. ^{Reference Finn, Allawendy, Dempsey and McMahon51}

As the complexity of care continues to evolve, clinical networks will become increasingly important at a national and international level.