With one person in 20 being affected by a genetic condition in their lifetime, medical professionals in primary care are increasingly expected to deliver genetic services in daily patient care. Professionals in primary care are increasingly expected to answer patient queries about genetic conditions, deliver genetic information and triage patients who require genetic or other specialist services. This requires appropriate skills and genetics knowledge to deliver care in daily practice that addresses patient needs, reduces morbidity and mortality and maximises the use of health resources. Genetics education is only very slowly starting to become a common part of medical curricula and continuing medical education that is case based and grounded in daily practice of primary care practitioners is urgently needed. However, postgraduate training programmes in primary care and public health are currently failing to meet these perceived educational needs, for example for general practitioners and midwives. This project has been designed to help primary health care workers to identify patients who may have a condition or healthcare concern with a significant genetic component and to manage the patient appropriately. The aim of the project is to implement adult education via an innovative Train the Trainers programme in genomic healthcare among European primary care practitioners. The education will be embedded in a Care Bundle that includes appropriate tools and resources for use in daily clinical practice. This project will be achieved via a partnership between expert patients and specialists in adult education, primary care and health genetics to achieve the long-term outcome of improvement in care of patients with genetic conditions or concerns. The objectives are to: 1) conduct an educational needs assessment in genetics for primary care practitioners and produce a course curriculum 2) produce a Care Bundle with both education and practical clinical tools to facilitate primary care practitioners to provide care for patients with genetic conditions or concerns 3) deliver adult education for primary care practitioners in six countries 4) create a sustainable online educational training course for primary care practitioners in Europe. A needs assessment (systematic review and stakeholder meeting) regarding education and training required by primary care practitioners to deliver effective genetic healthcare will be undertaken as a basis for the curriculum. The educational programme will be embedded into a 'Care Bundle' for primary care practitioners that will include not only the training component, but tools and resources for practical use in clinical settings. We will use 'Train the Trainers' methodology to deliver the adult education programme to a core group of practitioners, who will then also be equipped to train others in their own countries to provide genetic healthcare to patients. This will be interactive, case based and incorporate feedback from actual patients in each country. Using links with European and national patient groups, we will include interactive training sessions with real patients and online sessions with simulated patients: this is innovative in medical education in general and genetics education in particular. After an initial pilot course, the training programme will be modified according to feedback, translated for use and delivered in at least six European countries. In addition, the online course will be available in an asynchronous version for those who wish to undertake training in their own time. Sustainability will be assured through publication of outputs for use of educators and hosting of the course webpages by the European Society of Human Genetics, a stable pan-European organisation, the mission of which includes support of professional education and adoption of the programme by national professional organisations. Using Kirkpatrick's model of educational outcomes (Kirkpatrick 1967), we will test changes in knowledge and skills of the adult learners via an online survey, but will also evaluate changes in clinical practice and patient care through interviews with a proportion of learners three months after they have completed the course. The programme will enhance understanding of the appropriate management of patients with genetic conditions or concerns in primary care practitioners, improving the quality of healthcare in Europe. Through use of the Train the Trainers model, we will create a cohort of peer trainers that will exponentially increase the impact of the programme, as will the availabiity of the online training programme for at least five years beyond the project. Although this proposal covers education delivered in six languages, the programme will be freely available for others to translate into their own languages for their use nationally, creating further impact on practitioner knowledge and skills in Europe.
With one person in 10 being affected by a condition with a genetic basis during their lifetime, medical professionals in primary care are increasingly expected to deliver genetic services to their patients. Professionals in primary care (general practitioners, family doctors, nurses and midwives) are expected to answer patient queries about genetic conditions, deliver genetic information and triage patients who require genetic or other specialist services. Appropriate skills and knowledge of genetics in relation to healthcare are required to address patient needs, reduce morbidity and mortality and maximise use of health resources. This project was designed to help primary health care workers to identify patients who may have a condition or healthcare concern with a significant genetic component and to manage those patients appropriately. The focus of the Gen-Equip project was the implementation of adult education via an innovative ‘Train the Trainers’ programme in genomic healthcare, among European primary care practitioners. This was achieved through a partnership between expert patients and specialists in adult education, primary care and genetic health care. The seven participating organisations were five university departments involved in providing education for health professionals, one healthcare institution and one charitable organisation representing over 190 patient support groups. The partners were based in United Kingdom (lead partner), the Czech Republic, Iceland, Italy, Portugal and the Netherlands. The main aim of the project was to achieve the long-term outcome of improvement in care of patients with genetic conditions or concerns. The objectives, which were all achieved, were to: 1) conduct an educational needs assessment in genetics for primary care practitioners and produce a course curriculum 2) deliver accessible and appropriate online education for primary care practitioners in six languages 3) create a sustainable online educational training course for primary care practitioners in Europe 4) produce a 'Care Bundle' comprising a set of practical clinical tools to enable learners to apply the education they had received in their practice. A needs assessment (via systematic review, stakeholder meeting, stakeholder survey) regarding training required by primary care practitioners to deliver effective genetic healthcare was undertaken as a basis for the curriculum. The educational programme based on the curriculum was supported by a 'Care Bundle' that included tools and resources for practical use in clinical settings. To make the educational resources relevant to primary care, we used videos of simulated patients embedded into each online module. Stories told by real patients about their experiences were used to emphasise the relevance of genetics to primary care. Originally, in our application, we planned to offer education via a series of webinars - live and interactive seminars delivered online and recorded for later use. However, at the stakeholder meeting it became clear to the project team that we could greatly improve the educational resources if we also included a series of longer interactive modules that could be worked through at the learner’s own pace. We therefore extended our plans to produce two sets of resources. These were: 1) A series of nine case-based interactive modules produced in six languages, assessed and accredited by external professional organisations and 2) A series of webinars in six languages on key topics in genetic healthcare. All webinars were recorded and placed on the Gen-Equip website (www.primarycaregenetics.org), which now has a total of 32 webinars, with over one thousand views. We used the Train the Trainers methodology to target a core group of practitioners and professional leaders who could then be influential in disseminating and using the resources to train others in their own countries. Evaluation shows this strategy has been successful. Visits to the project webpages and downloads of resources indicate a satisfactory level of usage (6,218 visits from January 2015 to mid-September 2017). Over 33,000 different units of activity (e.g. studying a module or doing a quiz) have been recorded onsite, related to the online interactive modules. We have evaluated the effect of the learning resources and found that 1) there is a high level of user satisfaction 2) the resources have significantly increased knowledge and skills, 3) users report medium to long-term changes in their daily clinical practice as a result of using the resources and 4) trainers are using the modules to provide education to qualified professionals and students. Sustainability has been assured as the European Society of Human Genetics will continue to host the website and the project team is committed to updating the resources so they can continue to be used for many years. In addition, outputs have been published for use by educators.