The Global Heart Network
Press Release: Global Heart Network “One heart, one global platform and one ambition: a new online service which gives people in the developing world suffering from cardiovascular problems access to the best healthcare resources from around the world.”
A revolutionary new online platform, the Global Heart Network, is being launched to save the lives of the thousands of young children throughout the developing world suffering from fatal heart defects and other cardiovascular diseases.
Professor Afksendiyos Kalangos, the Greek doctor known as “the heart missionary” for his life-saving surgeries on more than 12,000 children, says: “Hundreds and thousands of children are dying every year for no reason at all. Many of them need to be treated and operated on before they are two years old but because they can’t get access to surgery in their own countries they are dying for nothing.” It is estimated that approximately 8 million children in the world suffer from heart defects and that one million die in their first year of life. The two main killers are congenital heart disease (CHD) and strep throat that leads to rheumatic heart disease. But Professor Kalangos, who is based in Geneva and chairs the new global network, says many lives could be saved if there were better co-ordination between NGOs working on the ground in emerging countries, local healthcare services, and heart specialists in the West. He adds: “The operation which children suffering from CHD need to save their lives is inexpensive — only $1,000 for the operating materials. However, we can only do this if we get to them quickly before they are too old. Speed is essential and what is so revolutionary about this new platform is that we should now be able to connect everybody together quickly to make surgery possible.”
The Global Heart Network is the brain child of Annabel Lavielle, a British humanitarian expert living in California, who came up with the idea because of the frustrations she had experienced in helping young patients in emerging countries to get the right treatment.
The platform will go live November 5 and will concentrate on African countries in which the GHN has many contacts and where Ms Lavielle has been working with NGOs for several years to help them bring young patients to the West for treatment. After months of negotiations she has recently managed to get a visa for a two-year-old Kenyan girl and her mother to travel to Switzerland in December for the treatment she needs. She says: “The young girl’s aunt lives in the US, discovered the GHN on the internet and contacted us for help. We have been working on this case for months and have just arranged for the little girl to get a visa to go to Geneva for vital surgery.”
The GHN platform has been designed to enable users to collaborate across the globe; either by sharing best practices in cardiac care or through helping charities resource clinical campaigns across geographies. Ms Lavielle hopes the network will help break down some of the silos that exist between NGOs, governments and healthcare specialists. “Often, you find that there is local expertise and resources, but there is a failure to connect. That’s why the GHN can act as a central brain, making those contacts and connections. While it’s great to be bringing young patients to the West for their operations, it’s obviously more effective to provide the healthcare close to where they live.” The GHN believes that through collaboration and joint advocacy it will have a bigger impact on policy-makers and governments — essential if change is to happen.
Ms Lavielle’s began her work helping young patients with cardiovascular disorders after discovering how prevalent the problems are in developing countries. She became aware of the extent of the disease following the death of her first child suffering from a congenital heart defect during childbirth and after the diagnosis and successful treatment of her second child with the disease. The new global platform, based out of San Francisco, will act as a bridge between patients and healthcare services by coordinating and sharing information between NGOs, volunteers, hospitals, doctors, surgeons and nurses working in the field to provide optimum cardiac care. Sadly, the incidence and prevalence of cardiac diseases is on the increase in emerging economies because even the most basic healthcare services in these countries are either under-resourced or do not exist. Around 30% of all deaths in these countries are attributed to some form of cardiovascular problem.
The inequality of cardiovascular healthcare for those living in the developed world and the middle and low-income is widening faster than ever. In the US there are 1,222 open-heart operations per million population while in Africa there are 18 per million: one center in the US provides care for 120,000 people while in most African countries one center serves 33 million people.
Dr Neil Shulman, Associate Professor at the School of Medicine at Emory University and the co-founder of the International Society of Hypertension in Blacks, is a leading cardiovascular expert and advisor to the GHN. He says: “A platform like this could have a giant impact on reducing heart-related health problems around the world. In Africa the problem is acute, especially among children suffering from illnesses such as strep throat, which can lead to rheumatic heart disease if not treated properly.”
Simple, inexpensive measures could help eradicate the incidence of rheumatic heart disease. For example, Dr Shulman said that teaching community locals how to make the diagnosis would prevent rheumatic heart disease in children. He cites research recently published in The Lancet, demonstrating that when local women in some of the poorest villages in India were taught to recognize infections in infants and treat them, it resulted in a 50% reduction in deaths.
“You might ask why these life-saving measures are not taught as a matter of routine. The answer is that while doctors have this knowledge, they are often concentrating on other important issues such as AIDS,” he says.
The GHN is not geared exclusively for the developing world — cardiovascular disease is a global problem — although initially its work will be concentrated there. Ms Lavielle adds that CHD is the most prevalent birth defect in every country around the world: nearly one in 100 babies is born with CHD and it’s responsible for the largest share of birth defect-related deaths.
CHD is the leading cause of infant deaths in the US: 40,000 per year are born with this problem, and thousands will die before their first birthday. Nearly twice as many children die from CHD in the US as from all forms of childhood cancer combined, although funding for pediatric cancer research is five times higher than for CHD.
The GHN is a not-for-profit organization working above local and national politics so that it can work across its core audiences. Its portal is designed for use by NGOs, local hospitals and all health authorities in developing countries, enabling them to share their databases and other information related to delivering services.
Ms Lavielle says: “We have spoken to a large number of NGOs. All of them have been extremely supportive of this idea and can see the obvious benefits of collaboration. Our research has shown that the majority of big NGOs — as well as leading cardiovascular clinicians — see the need for this coordination in care. As we will be working with many stakeholders, it’s crucial that we are independent of any organization or government to operate efficiently.”
The GHN plans a pilot launch this week and will be inviting all stakeholders, from clinicians to local authorities, to take part in a debate to establish what the platform should address, and to identify best practices and new strategies to grow membership and create further value for users. Ms Lavielle says the GHN should have at least 2,000 members within five years. These will include NGOs, medical providers, hospitals, patients, family members and donors. She also hopes that it will attract interest from the private and humanitarian sectors, as well as academia.
“Our aim is for at least 25% of NGOs in the field to sign up with the GHN,” she says.
Board Members Chair: Professor Afksendiyos Kalangos Prof. Kalangos is head of Department of Cardiovascular Surgery at University Hospital of Geneva. As one of the first supporters of the GHN initiative, Professor Kalangos acts as an advisor to all levels of the project. His extensive experience in humanitarian medicine through « Hearts for All » has also given Professor Kalangos deep insight into the issues in humanitarian medicine and has been key to shaping the structure of the GHN platform.
President: Annabel Lavielle Phone (US): +1 415.832.0653; Annabel@globalheartnetwork.net Ms Lavielle has extensive experience of working as a collaborative liaison for international cardiology efforts and has personal experience as a parent of children with congenital heart defects.
Vice-President: Hakim Yadi Dr Hakim Yadi is a strategy consultant specializing in technology development and translational medicine. Hakim provides precious guidance in the high-level strategy of the GHN. Hakim is an advocate of integrating clinical insight, academic research and industry know-how.
CTO: Raj Sampaath Raj Sampaath is a technology professional, technology innovator and social entrepreneur. Currently he is focused on social innovation using technology. As a director at TechSoup Global (TSG) he spearheads technology development that supports TSG’s mission to empower NPO/NGO with innovative technologies worldwide. His engagement in Global Heart Network is born out of that belief. The GHN’s mission is to create an efficient ecosystem by leveraging evolving technology among highly specialized healthcare providers, funders, enablers and needy patients in underprivileged circumstance.
Product Director: Marco Buhlman Marco Buhlmann is an entrepreneur and business developer specializing in high growth, technology-driven companies. Marco is responsible for developing the platform strategy and technology prioritization at the GHN.