Below we give a brief overview of the work of the NHS National Genetics Education and Development Centre. The links will take you to examples of some of our work, but of course a visit to the appropriate section of the website will give detailed information. Working with patient and professional organisations, Royal Colleges, Higher Education Institutes and Healthcare Trusts, the Centre has:
Identified the genetics and genomics knowledge, skills and attitudes important for delivering patient care and published the evidence underpinning this work
Achieved the adoption of these statements into specialist curricula and educational delivery for medical practitioners, nurses, and some allied health professionals
The Centre was set up as a key initiative of the Genetics White Paper. It is currently hosted by Birmingham Women’s NHS Foundation Trust. It has a small multidisciplinary team with expertise in educational theory and practice, genetics and genomics, clinical medicine and technology enhanced learning. We work closely with others who are leaders in their professions to provide expert knowledge to our projects.
When the Centre began work in 2005, our early results confirmed that most healthcare groups did not believe that genetics was relevant to their clinical practice. We also sought views from patients about the knowledge, skills and attitudes a health professional should demonstrate with regard to genetics. We then worked with students, practitioners and educators to develop a “continuum of genetics” education, with learning outcomes encompassing pre-registration to post-registration education. These include medical students, foundation year trainees, specialist registrars, GP associates in training, nurses and midwives and dietitians. Learning outcomes have been ratified by national professional organisations and adopted into curricula – for instance into 25 of 30 medical speciality registrar curricula.
In addition we worked with representatives of over 12 allied health professional groups and Skills for Health to develop a workforce competence framework for genetics activities in practice, which were accepted as National Occupational Standards in July 2007.
In the early years we concentrated on the clinical need for healthcare workers to identify patients and families who would benefit from the genetic technologies then available. We highlighted and supported being able to take a family history as a key component of the patient pathway, particularly when managing single gene conditions, as well as providing information (about genetic conditions and their aetiology) for use at the point of care.
In the last few years, laboratory techniques have advanced to enable thousands of pieces of genetic information from the genome of a person, tumour or infective agent to be analysed. In some clinical areas such information has been used to individualise clinical care, predict drug effects, diagnose infections, track epidemics and develop new therapies.
In January 2013, we held an international meeting on translational genomics which clearly identified areas in healthcare policy and education which should influence future strategy.
The Centre has identified that learning needs about genomics vary between professional groups. For most health professionals, the current imperative is to raise awareness of genomics, whilst some specialists need in-depth knowledge. The Centre has responded to these needs by identifying and publicising examples of genomic healthcare and developing materials and e-learning modules.