Gen-Equip Project– Equipping European Primary Care Health Professionals To Deal With Genetics

Scientific manager: Prof.ssa Daniela Turchetti

Gen-Equip Project




Sector: Adult

Unibo structure involved: Dipartimento di Scienze Mediche e Chirurgiche - DIMEC- Unità Operativa di Genetica Medica


Project Duration in months: 36
Start Date: 1/9/2014
End Date: 31/8/2017

Budget: 255.748 euro      
Unibo Budget: 21.009 euro


  • Coordinator: University of Plymouth (Regno Unito)
  • Stichting VU-VUmc (Paesi Bassi)
  • Univerzita Karlova v Praze (Repubblica Ceca)
  • Instituto de Biologia Molecular e Celular – IBMC (Portogallo)
  • Alma Mater Studiorum - Università di Bologna (Italia)
  • Landspitali University Hospital (Islanda)
  • Genetic Alliance UK Ltd (Regno Unito)

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 maximizes 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 availability 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.

Co-funded by the Erasmus+ Programme of the European Union