Indiana University School of Medicine visit Crann

Indiana University School of Medicine visits Crann Project Ireland

Crann was delighted to have organised and hosted a week-long knowledge exchange trip for Professor Joseph O’Neill and Professor Mary Ciccarelli from Indiana University (IU), School of Medicine. This took place from Monday 11th to Friday 15th June, 2018.

Collaboration between Crann and IU began last year following a visit to the Spina Bifida Clinic at Riley Children’s Hospital in Indiana. Kate Jarvey and Katrina Collins met Professor O’Neill at the Spina Bifida World Congress where Joe and Katrina presented papers in the same seminar. Their meeting at the Congress, was the catalyst for further discussion about how IU could support the development of the Crann vision. The generosity and openness of Joe and his colleagues to share information, programmes and research with Crann, facilitated the formalisation of a partnership between Crann and IU. We were introduced to Professor Mary Ciccarelli who has an interest in the life course care for individuals with chronic medical conditions.

Professor Mary Ciccarelli, Indiana University, with Mrs Kate Jarvey, Crann Project

Prior to their visit to Ireland, discussions took place between the IU team and Crann to identify and formulate objectives for the partnership that would serve as the foundation of a strategic plan. Drawing on this plan, a series of meetings with key stakeholders were scheduled.

Prior to their visit to Ireland, discussions took place between the IU team and Crann to identify and formulate objectives for the partnership that would serve as the foundation of a strategic plan. Drawing on this plan, a series of meetings with key stakeholders were scheduled.

Monday 11th June
Starting in Dublin, our day began at Temple Street Children’s Hospital (TSCH) with members of the multidisciplinary team for SB in Ireland. Dr. Jane Leonard and her colleagues talked about the role of TSCH as the primary national centre for SB care in Ireland. We then travelled to The Coombe, Maternity Hospital to meet with Professor Michael Turner, Gynaecologist and Obstetrician. As a lead researcher in the role of folic acid in neural tube defects, he shared his publications and presentations on the policy developments and debate with regard folic acid supplementation in Ireland.

The day ended at the headquarters of the Irish Wheelchair Association (IWA) in Clontarf, with a tour of their facilities and discussions about the partnership between Crann and IWA for the wheelchair skills training, Turas Saol. Moving forward from the initial feasibility study, we talked about the forthcoming programme and associated research being carried out in collaboration with UNESCO Chair at IT Tralee and IU.

After a full and interesting day, the team travelled to Galway in preparation for the meeting with NUIG, Institute of Lifecourse and Society on Tuesday morning.

Tuesday 12th June
Waking for an early walk-in Salthill, Galway, offering the perfect start to another busy day. All of Tuesday’s meetings took place at the Institute of Lifecourse and Society at NUIG. The first of these was with Ms. Cliona de Bhailis, at the Disability Law Centre. This is one of five research centres based in the Institute. A presentation from Cliona contextualised the rights of a person with a disability within the current Irish legal system. Questions from Crann and our IU colleagues enabled further clarifications in terms of the recent ratification by the Dáil of the United Nations Convention on the Rights of a Person with a Disability (UNCRPD) took place on March 7th 2018.

The second meeting of the day with Dr. Geraldine Leader, Director of the Irish Centre for Autism and Neurodevelopmental Research to learn more about her work on developing and piloting a register for autism in Ireland. Riley Children’s Hospital, Indiana contribute to the national register for SB. This is of interest to Crann as a core principle of collaborative working.

The final meeting at NUIG was with the Director of the Institute of Lifecourse and Society, Professor Pat Dolan. As chair of the Unesco Child and Family Centre, we heard about the work of the Unesco Centre in promoting family resiliency and youth participation.

We then travelled to Cork for the final part of the visit.

Visiting the Department of Public Health, Chair of Eurocat Registry in Ireland
L-R Professor Joseph O’Neill, Professor Mary Ciccarelli, ?, Dr. Mary T O’Mahony, Specialist in Public Health Medicine, Department of Public Health, HSE South

Wednesday 13th June
A full day of meetings began at the Department of Public Health, hosted by Dr. Mary O’Grady, an epidemiologist. Discussions between ourselves, the Indiana team and Dr. O’Grady took place about the gathering of public health data with regards congenital abnormalities and neural tube defects (NTDs). There was also a particular focus on the Eurocat registry which is managed by Mary and her team. This registry gathers data on NTDs from regions in Ireland (South East, Cork & Kerry and Dublin).

A series of meetings organised with University College Cork began with a visit to INFANT (The Irish Centre for Fetal and Neonatal Translational Research). In addition to meeting members of the team from INFANT, we were given an opportunity to visit the neonatal unit at Cork University Hospital and met with Dr. Olivia O’Mahony, a paediatric neurologist at her clinic in CUH. These introductions served as opportunities to discuss shared interests in practice and research, with a view to follow-up conversations about taking ideas forward between Crann, IU and INFANT.

After lunch we moved to the Tyndall National Institute who is is a leading European research centre in Information and Communications Technology (ICT). Facilitated by Mr. Carlo Webster, Senior Business Development Manager presentations were made as examples of the work in healthcare they undertake as part of the Institute.

At the end of the afternoon the Crann and IU team joined the Director of Assert, Professor Barry O’Reilly on the UCC Brookfield Campus for a tour and introduction to the work of the Centre. With ASSERT’s focus on medical education, training and progressing professional excellence, discussions about IU School of Medicine education programmes and possible collaborations took place.

The final part of the day was hosted by the Head of the College of Medicine and Health at UCC, Professor Helen Whelton. At a working dinner, we were able to reflect on the day which was organised and facilitated by Eimear Keohane, Head of Development for the College. A number of potential avenues for exchange between the two universities were explored. The relationship formed between UCC and Crann was further strengthened particularly in relation to Crann’s research and education goals. Potential areas for collaboration include work on patient empowerment, patient and provider education, connections to resources, use of registries to promote proactive follow-up, and collaborative research and shared plans of care to promote consistent communication.

Thursday 14th June
A range of providers in the sector, both from a statutory and community/voluntary sector working with children and adults with a disability, were introduced to the IU team. These represented different aspects of services that support the development and well-being of children and adults and included;

  • The National Learning Network
  • Enable Ireland
  • National Council for Special Education
  • Sports Development Officer, IWA
  • HSE Disability Manager, Kerry
  • Primary Care Physician

Friday 15th June
On Friday 15th June, a community paediatrician from Cork spoke to the Crann and IU team, similar to the Thursday meetings to have a discussion about service provision in the Munster region for children with chronic medical needs, such as SB.

After a morning of reviews and reflections of a busy but information-packed week, the IU knowledge exchange trip was concluded in the most important way. Children and adults with SB and their families gathered on Friday afternoon at the Centre and met Joe and Mary. We were honoured to have a sneak peak performance by the teen club of their ‘Snow White’ production. There were individual performances by Cahill and Ciara, Niamh and Conor. Majella completed the performances of the evening with Celtic melodies played expertly on her violin.

Joe and Mary were presented with gifts to remember this visit by including the controversial gift of a Kerry GAA shirt. It was quickly balanced by a Cork jersey! Both doctors remarked on how meaningful it was to them to meet with and chat with children, adults and their families. Chatter, laughter, music and song filled the Crann Centre on Friday afternoon as Mary and Joe began their return journey to Indiana.

Crann has documented the meetings and discussion of the trip and with IU will use this to finalise the strategic plan for partnership and activities resulting from this collaboration.

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