Scientist’s dedication in policy creates change for people with intellectual disability

By Daisy Hessenberger, Frontiers science writer

Professor Joav Merrick is a busy man. Medical director of the Division for Intellectual and Developmental Disabilities with the Ministry of Social Affairs and Social Services in Israel, in his spare time he works as a professor at various other institutions. His appointments span not just continents, but also specialties. He is professor of paediatrics, child health and human development at both the Hebrew University and the University of Kentucky, while also holding a professorship in public health at Georgia State University.

From pediatrics to public health

“I am paediatrician by trade,” Merrick said, when asked about his astonishing career. After completing medical school in Copenhagen, Denmark, where he grew up, Merrick entered the field of paediatrics, publishing the first Scandinavian textbook on Social and Community Paediatrics. Merrick has received both national and international awards for his extraordinary contribution to child welfare, including the LEGO Prize in 1987 known as “The Children’s Nobel Prize”.

So how did an internationally successful career in paediatrics result in a world-renowned career in public health? The shift came about somewhat randomly. “I came to Israel as a paediatrician who wanted to do work in child abuse and neglect, because this was what I was doing in Denmark. When I arrived in Israel, they said, ‘Oh, we don’t have child abuse and neglect here’… I was then offered the position of medical director of the Ministry of Social Affairs and I took it. I have been building it up since 1991,” Merrick explained.

And building it he has. As director of the Division for Intellectual and Developmental Disabilities, Merrick provides services to people with intellectual disability both living in the community and also in residential care centres. “I have medical clinics in over 60 places with 24-hour nursing services and allied health professionals. Another 3,000 people are living in smaller units, group homes, protected apartments,” he said.

Staying motivated under pressure

Merrick is not your typical researcher. “I am not a, let’s say, a full-time researcher,” he points out. “I am a part-time researcher, because my main work is working with people with intellectual disabilities…I am responsible for 35,000 people in Israel and making sure that they get the optimum health service that they deserve.”

Responsible for so many people, Merrick says what motivates him is the people. For him it’s a privilege to work with this population and being able to help them. “You do something that you can be proud of…You are providing them with meaningfulness and you can see a lot of them are contributing to society in a very positive way. I think that this is one of the driving forces that makes you go on and makes you want to do things better every day and every day,” he said.

That is not to say that he does not find time for pure research. He says the privilege of working in policy is to see the real life consequences of research. For example, babies are routinely tested after birth for a disease known as Phenylketonuria (PKU) – this is the small blood test taken from a newborn baby’s heel. The treatment for this disease is a specific diet, which used to be maintained only until the brain stopped developing. However research by Merrick showed that maintaining this diet later into life benefits individuals (Merrick et al, 2003). “We felt and we believed and we showed that this is something for life so the diet is for life and this has changed the things in Israel,” said Merrick.

International impact on public health

Merrick’s work also focuses on public health at an international level. Recently he has been working on a textbook, Health Care for People with Intellectual and Developmental Disabilities across the Lifespan, with one of his good friends Professor Leslie Rubin from Atlanta. The primary difference between this textbook and previsions editions/books, is its emphasis on international scope. Calling it the “crown of my career,” Merrick describes this text as “a comprehensive book, where we have looked at what happens around in the world and where do we need to go.”  Once it’s published (end 2015 or beginning 2016) Merrick says he will have then accomplished something to help this population get better health care and have a better quality of life.

To encourage international collaboration on the topic of public health, Merrick founded a virtual institute in Israel. Since its establishing in 1998, the National Institute of Child Health and Human Development in Israel catalysed collaborations with universities across Northern America, Europe and Asia. Merrick hopes the institute will become involved with teaching the next generation of researchers. “I would like to see a masters and doctoral program in disability studies in Israel and I would have that connected with at least four regional care centres for people with intellectual disability (one stop centers),  which will do the clinical work,” he said.

Role of technology central to the development of research

Technology has greatly contributed to Merrick’s career, and the impact his research has on an international scale. “We have been doing collaborations with people all over the world,” said Merrick. “Especially I can say ‘thank you’ to the internet…the world has become a lot smaller place and [it is] easy to contact people.”

The rise of technology has not just made international collaborations easier; it has vastly improved the dissemination of research. As Merrick puts it, with “digital journals you are connected with the world.” As Field Chief Editor of Frontiers in Public Health, Merrick knows first-hand the benefits at both ends of the academic publishing model. “Frontiers has a digital-based process that is very helpful for the chief editor, and I think for the author it’s a very innovative way of doing a journal –because you get mentorship, that you get people to help you and guide you through the process of publication.”

The future of public health

Besides his personal goals of publishing his text book and establishing at least four regional medical home centres for people with  intellectual disability in Israel, Merrick also envisages a trend to more specialized health care for this population worldwide. “I think it is a specialized field that requires special knowledge,” he said. “Specialized public health services would benefit this population and would allow them to integrate more fully into society.”

When asked about the greatest challenges he faces, Merrick chuckled. “I have a lot of challenges within the medical system and the health system and the HMOs…that is my challenge. Before I came here I thought I went three steps forward, last week I am three steps backwards. But I am nudging my way forward. I hope that I will get some help from somewhere to accomplish my dreams.”