Implementing genetic education in primary care: the Gen-Equip programme
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Implementing genetic education in primary care: the Gen-Equip programme Milena Paneque 1,2 & Martina C Cornel 3 & Vaclava Curtisova 4,5 & Elisa Houwink 3,6 & Leigh Jackson 7 & Alastair Kent 8 & Peter Lunt 7 & Milan Macek 5 & Vigdis Stefansdottir 9 & Daniela Turchetti 10 & Heather Skirton 7
Received: 21 November 2016 / Accepted: 20 February 2017 # Springer-Verlag Berlin Heidelberg 2017
Abstract Genetics and genomics are increasingly relevant to primary healthcare but training is unavailable to many practitioners. Education that can be accessed by practitioners without cost or travel is essential. The Gen-Equip project was formed to provide effective education in genetics for primary healthcare in Europe and so improve patient care. Partners include patient representatives and specialists in genetics and primary care from six countries. Here, we report the progress and challenges involved in creating a European online educational program in genetics. Keywords Primary care . Family medicine . General practitioner . Online education . Genetics . Professional education . Primary care
Background Primary care can be provided by a range of health professionals and is defined by the World Health Organization as health care that is directly accessible by patients as the first * Heather Skirton [email protected] 1
I3S Instituto de Investigação e Inovação em Saúde, Universidade do Porto, Porto, Portugal
2
IBMC—nstitute for Molecular and Cell Biology, UnIGENe and Centre for Predictive and Preventive Genetics (CGPP), Universidade do Porto, Porto, Portugal
3
Department of Clinical Genetics, Section Community Genetics, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands
4
Palacky University—University Hospital Olomouc, Olomouc, Czech Republic
point of contact, as well as being comprehensive and ongoing (WHO 2016). In addition to managing symptomatic patients, primary care involves prevention, pre-symptomatic detection of disease, and early diagnosis, all of which are relevant to patients at risk of genetic disease. With expansion of genetics and genomics in mainstream healthcare, primary care professionals are increasingly expected to provide appropriate services to their patients who have or may be at risk of a genetic condition. At least 10% of patients have a condition with a genetic component (Global Genes 2017) and these will be seen in primary care. It is important that primary care professionals can recognize whether a patient might be affected by, or carry, a genetic condition; and secondly are aware of situations where genetic/genomic investigation may help inform management and treatment. This requires appropriate skills and genetics knowledge to deliver care that addresses patient needs and maximises the use of health resources. Primary care providers are currently challenged to identify patients whose symptoms, physical findings, or family history indicates the need for genetic diagnosis and/or testing, to
5
Charles University-
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