Ingram Schulze-Neick

Tell us a little about yourself and your work.
My name is Ingram Schulze-Neick and I’m the director of the national British register for pulmonary hypertension at London’s Great Ormond Street Hospital, one of the largest children’s hospitals outside the USA.

What is pulmonary hypertension and how common is it in congenital heart disease patients?
Pulmonary hypertension is an increased blood pressure in the lung vasculature – the veins and arteries that service the lungs. Over time, the increased blood pressure damages the lung. About 30-40 percent of congenital heart disease patients are afflicted.
My professional focus on pulmonary hypertension dates back to 1993. We’re doing intensive research dedicated to diagnosing this illness as early as possible. If we’re able to treat the patient at an early stage, we may avoid or at least limit the damage to the lungs.

The health care system in the UK is organized differently than in Germany, where you worked previously. Could you tell us a little about that?
In a way, we try to de-centralize a very centralized structure. In the UK, and especially in England, many central institutions are located in London. So we have all the technology to examine the patients’ hearts and lungs in London. But we also travel to so-called outreach clinics in other major cities and see the patients there. We go where the patients are. That’s much more efficient, because instead of 20 patients taking a trip to see the specialist, the specialist takes one trip to see 20 patients. It’s more convenient for the patients, but there are disadvantages for the central clinic. A part of the centre’s resources are always “on the road” and not available at the centre itself. Also, if all patients went to the centre, it would receive more funding and could invest in expansion and further specialization.

Could this de-centralized system be adapted in Germany or other countries? Or does it already exist in other countries?
No, such a system does not exist in other countries, though there are countries that are currently establishing similar systems. The British system could serve as a model for smaller countries, since they are less populated. A big challenge in Germany would be the decision where the central clinic should be located. Due to the federalist system in Germany, a system based on a centralist structure is hard to implement. In the end, it all comes down to the individuals in charge. The doctors need to be convinced that it makes sense to manage their patients centrally. That’s not always self-evident, not even in the UK.

What do you expect from a platform like Corience?
First of all, I think it is an exceptional platform, even though it needs more input to function well and become more widely known. It could serve as a great information centre, provided that it offers “doctor-approved” content. The wide reach of the website could be especially helpful if doctors could access information on cases of very rare diagnoses. If there was a pool of patients with a very rare illness and specialists from all over Europe published their insights on the platform, that would be extremely valuable. Not only for the doctors and researchers, but also for the patients and their families. A mother in Portugal could then access the platform and read the latest articles by Norwegian, British, German, or French doctors, and also find addresses of doctors who could treat her child. That is something that still needs to be realized.

What interests do you have besides your work?
I like to paint and play cello – I’ve been playing since I was 10 years old. Some of my London colleagues and I play regularly, and we sometimes give concerts at cardiology conventions. Just recently we played at a rather large convention in Scottsdale – we started with classical music and five hours later ended up playing rock songs.