Developing a framework for implementation of genetic services: learning from examples of testing for monogenic forms of
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ORIGINAL ARTICLE
Developing a framework for implementation of genetic services: learning from examples of testing for monogenic forms of common diseases Tessel Rigter & Lidewij Henneman & Jacqueline E. W. Broerse & Maggie Shepherd & Ignacio Blanco & Ulf Kristoffersson & Martina C. Cornel
Received: 24 March 2014 / Accepted: 14 May 2014 # Springer-Verlag Berlin Heidelberg 2014
Abstract Genetics in health care is shifting, and responsibilities of genetic and nongenetic specialists are changing, requiring new guidance on how to adapt health care to advances in genetic services. This paper explores facilitators and barriers in the process of implementation of innovations in genetic health care. Furthermore, lessons learnt for optimizing Electronic supplementary material The online version of this article (doi:10.1007/s12687-014-0189-x) contains supplementary material, which is available to authorized users. T. Rigter : L. Henneman : M. C. Cornel (*) Department of Clinical Genetics, EMGO Institute for Health and Care Research, VU University Medical Center (BS7, D450), PO Box 7057, 1007 Amsterdam, The Netherlands e-mail: [email protected] J. E. W. Broerse Athena Institute, VU University, Amsterdam, The Netherlands M. Shepherd NIHR Exeter Clinical Research Facility, University of Exeter, Exeter, Devon, UK
development of new genetic services are summarized. Barriers and facilitators in transition processes were identified using mixed methods, including an online open-ended questionnaire among professionals and an international expert meeting. A multi-case study approach was used to explore recent experiences with innovations in genetic services in different phases of implementation. Barriers encountered in transitions in genetic service provision include the following: lack of genetic knowledge and skills among nongenetic health care providers, resistance to new divisions of responsibilities, and a need for more close collaboration and communication between geneticists and nongeneticists. Facilitating factors include the following: statutory registration of genetic specialists, availability of essential staff and equipment, and existence of registries and guidelines. Other challenges are experienced in the establishment of the appropriate legal and financial structures. A set of points to consider for genetic innovation processes is proposed, addressing, e.g., transition management and cooperation and communication strategies.
M. Shepherd Research and Development, Royal Devon and Exeter NHS Foundation Trust, Exeter, Devon, UK
Keywords Genetic services . Translational medical research . Diffusion of innovation . Interdisciplinary communication . Genetic education
I. Blanco Hereditary Cancer Program, Catalan Institute of Oncology, IDIBELL, Hospitalet de Llobregat, Llobregat, Spain
Introduction
U. Kristoffersson Department of Clinical Genetics, Lund University Medical Center, Lund, Sweden M. C. Cornel Centre for Medical Systems Biology, Leiden, The Netherlands M. C. Cornel CSG Centre for Society and the Life Sciences,
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