| 4. In which ways is the initiative creative and innovative?
The LEGOS methodology, rather than focusing on a pre-set solution or goal, aims to attain different results, based on each group's expectations and abilities. It is plastic and more dynamic than conventional approaches thus leading to better interaction between team members.
Examples of its creativity and innovation are:
1. ECO TAXI: an itinerary delivery of three sets of cardiac equipment providing 12 new out-reach clinics every month. The idea is to make the technology come to the patient instead of otherwise;
2. HEART CARAVAN: an active search for older children occurring once a year in 13 of the most remote sites. Most of the team members, staff included, travel together to each one of these cities to train local health professionals and deliver care and information to families and other community members. Subsequently, these patients are followed at the virtual outpatient clinics;
3. PERINATOLOGY network: a spin-off from the cardiology network focusing on training health professionals to care for mothers and babies;
4. MICROCEPHALY task-forces: the use of Network resources to identify and care for children with microcephaly in the State;
5. MUSIC TEACHING PROGRAM: an innovative way of teaching health habits, with focus on prevention, for children and adults.
| 5. Who implemented the initiative and what is the size of the population affected by this initiative?
The initiative of changing the reality for children with heart disease in Paraíba came from the State Government. To achieve this goal, a partnership was established with the non-governmental organization CirCor.
Initially, CirCor, the technical partner was responsible to devise a work plan and present to the Health Secretary for approval and funding. After approval, CirCor implemented the Program under supervision of the Health Secretary.
The Health Secretary audits the Program every three months and larger audit processes take place once a year involving other State organs such as the state’s General Auditing Department (CGU).
The original Program was designed for a six-year period divided into three equal parts of two years for establishment, conduction and technology transferral. And the objective was to structure the care for children with heart problems in the State.
In its first version, 13 sites were included (12 maternity centres and a paediatric Hospital) to cover approximately 60% of births in the public health system and to establish diagnostic, treatment and follow-up facilities for neonates and older children.
It reached its goals and was expanded, after the second year to 22 participant sites aiming to reach 90% of public health births, and expanded its training to include perinatology. And due to the LEGOS plasticity, many point-of-care and on-going spin-off actions developed over the years, such as Heart Caravans, Heart Rooms, Echo-Taxis.
In 2015, besides the routine activities, the Network undertook the task of evaluating, retrospectively the head circumference of babies born in Paraíba since 2012. In one month, nurses from participating sites retrieved this information from 16.208 birth records. Since then, out-patient clinics are being adjusted to care for children with suspected or confirmed microcephaly, as well.
| 6. How was the strategy implemented and what resources were mobilized?
All resources come from State funds. The first two years had a yearly budget of US$ 1.200.000,00. In 2014, with the increase in number of centres (from 13 to 23) and expansion to perinatology services, this was adjusted to US$ 2.000.000,00/year. These resources cover the equipment acquisition, clinical and surgical services, database and website development, training and every other aspect.
CirCor is the NGO responsible for Networks design, methodology, service implementation, monitoring and adjustments. In the start of each new period of the Network, plans are presented to State officials. Once approved, CirCor executes the plans under trimestral monitoring of the Program's progress.
Four initial protocols were developed: (i) a training protocol, to explain the use of all equipment and software; (ii) a focused clinical examination protocol, to remind clinicians about the details of neonatal cardiology examination before discharge; (iii) a protocol for pulse oximetry testing of all babies born after 34-weeks’ gestation, based on guidelines published at the time; and (iv) a screening echocardiogram protocol for neonatologists, which included three two-dimensional anatomical views and colour flow Doppler imaging. Members from all units were invited to participate in training sessions to learn and adhere to protocols. Each centre appointed three coordinators (one physician, one nurse and one computer support person) to report results and problems to the reference centre. The training protocol included an initial eight-hour course followed by online sessions for all team members. Many other protocols evolved with time, including post-operative guidelines, nutritional and psychological manuals, among others.
Screening, diagnostic tests and management strategies
Indications for screening echocardiograms were either an abnormal clinical examination or pulse oximetry, defined as an oxygen saturation ≤ 95% or a difference in saturation greater than 2% between the right hand and one foot. Abnormal pulse oximetry results were automatically noted on a database, allowing the Network to contact the clinic and request that they follow up any babies discharged home with abnormal test results. This active search protocol tracked over 80% (59 013/73 751) of the discharged neonates and ensured that abnormal findings were acted on.
Echocardiograms were done by neonatologists under direct online supervision by paediatric cardiologists, or a video recording of the examination was stored and forwarded together with the neonatologist initial diagnostic impression. Paediatric cardiologists reviewed and reported on the videos, with advice on clinical management, within one day. Virtual outpatient sessions, ward rounds and other meetings were also scheduled to provide a full range of interactions between the health workers in rural areas and smaller municipalities in Paraíba and the paediatric cardiologists at the reference centre.
Surgeons and anaesthetists from Recife agreed to travel to the paediatric hospital in João Pessoa, the capital city of Paraíba, once a week, to perform heart surgery. The more complex cases, however, were referred to Recife.
Internet connections were unreliable for some health centres. To overcome this problem, tablet computers with third generation mobile wireless Internet connections were distributed to all centres. Webex teleconference software (WebEx Communications Inc., Milpitas, California) was acquired to provide secure communication over the Internet. Online meetings were held each day, among all centres, using existing tablets or laptop computers. Echocardiographic images were either directly acquired from the echocardiogram screens or stored and subsequently uploaded to the website.
The Network has a small number of full-time members working, mostly, by optimizing local resources. That means working with public health employees from both state and municipality levels. In most cases, work hours from on-call shifts are transferred to hours in the Heart Rooms, but these negotiations vary from centres.
| 7. Who were the stakeholders involved in the design of the initiative and in its implementation?
During the initial stages of Network, CirCor and SES-PB, as well as other health professionals, managers and academic institutions from various municipalities were involved. Meetings with some families also took place to discuss major needs and health care delivery.
Three different groups are the main beneficiaries from this Program: health professionals, local health managers and patient/families.
Nurses have been fundamental to the Program, by both providing the initial screening tests and organising the steps children may follow within the Network. Together with paediatricians, another key group of professionals, they are under continuous training, tailored to the specific needs and goals of each centre and responsible to spread the LEGOS technology and work methodology to other local professionals thus increasing awareness and standards of care.
Local health managers also largely benefit from the Program because serious worries, such as patient transferral to specialized centres, are no longer falling into their offices. At the same time, they benefit from much more accurate health information, new technology and Network integration based on which they can do planning. However, overcoming political views and understanding and supporting the Network as a technical Program is a continuous challenge.
Finally, the population that uses the Unified Public Health System (SUS) in the State and who lives in remote sites are the key beneficiaries of the Program. They now have quick access to state of the art technology through their local health system. And once screened and diagnosed the Network structure assures that they remain seen regularly and get referred to the required consultations, diagnostic tests and management processes, as needed.
This working partnership’s main impact is that it overcomes the shortage of specialized personnel in Paraíba. However, the few that exist or are in training are fully prepared to re-inforce the Network’s standard procedures for each situation.
| 8. What were the most successful outputs and why was the initiative effective?
The Network has reached all its goals and surpassed some. Its 10 most successful outputs can be summarised as:
1. Putting into practice Public Health principles such as Universality, Equity and Regionalization by delivering paediatric cardiac services to all children born within the State of Paraíba conforming only to their medical needs, independent of place of birth, gender, or any other factor;
2. Mixing high-technology with simple measures to optimize the system to specific needs and abilities;
3. Orchestrating the work of public health professionals as well as other public servants to collaborate into an integral line of care, independent, for the most part, of political, religious or other personal positions. The emphasis was put on the welfare of patients and population in general;
4. Implement a screening protocol for congenital heart disease in neonates without the need for any legislation to reinforce that;
5. Establishing a paediatric cardiology service with surgical facilities and thus abolishing medical litigations and putting an end to "the death row" era;
6. Contributing to decrease infant mortality, particularly in the neonatal period;
7. Training over 1.500 professionals in screening for CHD and other medical and management areas;
8. Developing a database to store all data (including medical images) for paediatric cardiology;
9. Generating medical statistics, which not only helps understanding real public health problems but also fosters research into its cause and impact and can be used for the development of public health policies;
10. Demonstrating the plasticity of the LEGOS work-model which was able to respond to the needs of the population/health system to generate new programs, expand to accommodate perinatology services and to help facing the microcephaly outbreak.
The effectiveness of the Network can be attested by its numbers. The following data refers to the period of January 2012 to December 2016:
· 146.422 neonates screened
· 10.786 older children screened
· 2.014 foetuses screened
· 3.739 screening echocardiogram tests with 1,951 congenital heart disease diagnosed in neonates (13.32 per 1000 live births)
· 8.378 echocardiograms
· 12.055 consultations
· 532 paediatric cardiac operations
· 289 courses/symposia with over 5.500 participants
· Regular weekly meetings and two full (cardiology and perinatology) on-call teams online on 24/7
· No medical litigations over paediatric cardiology in the State for the whole period of the Network.
| 9. What were the main obstacles encountered and how were they overcome?
The main obstacles that hinder the Network’s full operation and expansion are listed below:
1. Changing culture from live consultations to incorporate the use of technology and of online interaction started with the LEGOS methodology;
2. The use and compliance with Network’s protocols, particularly data input in the Network online database and website are time consuming and often overlooked by busy workers;
3. Change of nursing staff or other well trained network professionals due to hospital management changes, economical cuts or political changes;
4. Involving local paediatricians in the management of the new technology to run the virtual clinics and conduct patients under online cardiology supervision;
5. Poor Internet connection which often hinders the analysis of live transmission of echo images;
6. Occasional non-availability of transport to bring patients to larger centres when needed and even to get the Echo Taxi equipment for the virtual outpatient clinics;
7. Infrastructure to perform paediatric cardiac surgery which is still incipient allowing for coverage of only 30% or the required total numbers. This is the main challenge of the Network.