(Full report available from PHG Foundation.)
1.
In October 2001,
the Public Health Genetics Unit (PHGU) was commissioned by the Wellcome Trust to
undertake the development of a strategy for the education of health
professionals in genetics. This
work was a response to the widespread recognition that genetics would spread
from specialist genetics centres into most other areas of health services and
that the wider workforce of health professionals was ill prepared to undertake
the new roles entailed.
2.
The project had
two aims. Firstly to review the
present educational programmes in the light of prevailing NHS strategies,
workforce, and professional development structures and to consider future
possible methods for promoting genetic competencies. Secondly, to work with identified stakeholders within the
professions and outside to develop a strategy for education and training.
3.
The scope of the
work was to cover non-genetic medical practitioners including public health
practitioners, nurses, midwives and health visitors, pharmacists, dieticians and
health service managers. Undergraduate
and postgraduate education would be included.
Although there would be some emphasis on the Department of Health and the
NHS in England, relevant information would also be sought for the devolved
health services in Scotland, Northern Ireland and Wales.
4.
This document is
a report of the first phase of the work.
5.
The Report
describes the main policy themes set out in the NHS Plan and the extent to which
they are concerned with genetic aspects of health and health services.
The main priorities of patient access, quality standards and workforce
development have meant that developments in genetics are not prominent in the
plans of mainline NHS organisations. The
Cancer Plan is alone amongst the National Service Frameworks in mentioning the
importance of genetics and in recommending that advice on genetic aspects of
cancer needs to be available in primary care and cancer units as well as from
the specialist services.
6.
In contrast,
those documents and reports that have focussed entirely on genetics over the
past decade or so have steadily commented on the importance that advances will
have for health and health services. There will be opportunities across the whole of medicine far
outside the confines of specialist genetic services. The need for education of a wide range of health
professionals has been a constant theme. However,
until very recently there have been no major initiatives to develop this.
7.
Genetics does,
however, feature as a major element of the NHS Research and Development strategy
and the Science and Innovation Strategy. These have led to major developments during 2002 with funding
of six Genetic Knowledge Parks and two Reference Laboratories.
A Green Paper on Genetics is expected in 2002.
8.
Outside
specialist genetic services, doctors and nurses most commonly provide genetic
advice in the context of cancer and antenatal care. Two antenatal genetic tests and one neonatal test are soon to
become the subject of National Screening Programmes. The development of high quality care in these areas is
therefore of the most pressing importance.
However, there is evidence from many reports, including a national
Confidential Enquiry, that the quality of genetic advice given by
non-geneticists is variable and high standards not commonly achieved.
9.
For pharmacists,
education to become involved in pharmacogenetic testing is of most immediate
concern. For dieticians, the need
to understand and be able to advise on the relationship between genetic factors,
diet and disease is perhaps a little more distant.
Finally for public health physicians and health service managers there is
the need to understand genetics as a major determinant of disease and seek ways
of ensuring advances are
translated into effective health services.
The evidence is that the large majority of these health professionals do
not understand genetics well enough to be able to undertake these roles.
10.
Education is
needed at the levels of undergraduate, general professional training, specialist
training and continuing professional development.
In broad terms across the professions, genetics as a basic science is
taught to a greater or lesser extent in the undergraduate curriculum, though the
actual amount of this, particularly in the nursing curriculum, is quite minimal.
11.
Professional
training is variable. For doctors,
skills such as constructing a family tree, and basic understanding of the
ethical or social issues are thought to be important.
An initiative is in place to develop a set of basic learning objectives
for medical undergraduates. Once
agreed these will need to be disseminated and implementation facilitated.
There is little or no mention of genetics in most nurse, pharmacist, dietician
or health service manager training. The
input into the training even of midwives and health visitors is variable.
12.
At the
postgraduate level, the genetic content needs to be tailored to the particular
speciality, whether this is primary care, a hospital speciality, or, in nursing,
a speciality such as midwifery or health visiting.
In the medical profession, an initiative is beginning to ascertain the
various speciality requirements for physicians, to define a curriculum for each
and to develop learning resources. However,
neither this initiative nor the undergraduate initiative mentioned above has
received dedicated resources.
13.
Nurses, too have
recognised their learning needs during the last few years and there is a move by
the Royal College of Nursing to work towards developing an educational
programme. Proposals to develop an
outline curriculum content have been made, but not funded.
For other professionals, there is not yet the groundswell of opinion that
would support the need for genetic education. Discussions about the need for education are still at an
early stage amongst those with a special interest.
14.
Developments in
genetic education for non-specialist health professionals tend to have emanated
from university departments with a special interest often founded in research in
the educational area. Formal
courses in genetics, some with a special emphasis on cancer genetics have been
identified at six higher education institutions and several further courses are
at an advanced stage of development. In
addition most regional genetics departments run training and study days and
undertake talks to various groups by invitation, but they are hampered by lack
of resources and time. Three
institutions, Cambridge, Cardiff and Sheffield are particularly focussed on
Public Health Genetics. They
provide placements for Specialist Registrars and run courses for public health
specialists, health policy managers and others.
15.
The Knowledge
Parks all have plans to take forward genetic education.
In addition, there are numerous electronic resources based on both sides
of the Atlantic, which provide education and information on most aspects of
genetics and aimed at health professionals and patients. Whilst these are a major resource, their use may be limited
by lack of knowledge about their existence, lack of access, doubts about the
accuracy and individual relevance of their contents and possible inconsistencies
with local services. Some of these
areas may be remedied by the development of a genetic section of the National
Electronic Library for Health (NeLH) possibly linked to local regional genetic
websites.
16.
The picture on
the overall level of resources going into developing health professional
expertise in genetics is one of individual enthusiasts committed to developing
initiatives and frequently unsupported even by the freeing up of their personal
time. This lack of resource
commitment is all the more surprising given the much higher levels of funding
provided by the Medical Research Council, NHS Research and Development, the
Wellcome Trust and other charities large and small for basic biological,
molecular and clinical research. Much
of this is now based on genetics and most purports to lead to
possible advances in
prediction, prevention and treatment of disease.
The astonishing disparity begs the question how these advances will be
communicated and promoted to the workforce who carry out the day-to-day
interactions through which these advances will be realised.
17.
The Report gives
consideration to some of the general requirements and challenges for the
development of genetic education. Some
progress has been made both in the UK and the US in agreeing core competencies
in genetics. The educational
challenge will be great, given the complexity and range of the science,
clinical, ethical, legal and social issues in genetics and the knowledge and
skills required. A multiplicity of
methods will be needed including the provision of support to learning through
clinical interactions and more formal educational processes.
Some lessons might be learned from development in the United States, in
particular the National Coalition for Health Professional Education in Genetics.
18.
The Report
concludes that the development of a programme to promote genetic competency
widely amongst health professionals is overdue.
It will present a difficult challenge because of the complexity and range
of content, the differing needs of individuals, and the many competing
priorities within the NHS.
19.
Much progress has
been made by individuals and institutions including new courses, initiation of
work to ascertain requirements for various specialisms and the development of
electronic resources. However, this
has been hampered by lack of high-level commitment, lack of resources and lack
of co-ordination.
20.
In the final
section recommendations are made for the development of a strategy for genetic
education of health professionals.
21.
It proposes that
a UK partnership for genetic education should be set up including Department of
Health, interested research institutes and funding bodies, the private sector
and a wide range of health professionals. This
partnership would provide overall leadership, apply pressure for commitment of
resources and ensure that educational needs of the workforce were included as
quality standards and as priorities for Workforce Development Confederations.
22.
The Report
describes work on antenatal screening, familial cancers and the development of
competencies in primary care, hospital and public health specialists as being of
most immediate priority and outlines possible initiatives to promote education
in these areas. For undergraduates
in all specialities, learning objectives should be derived and courses
developed, with, where necessary, initial concentration on training the trainer.
23.
Finally the
Report recommends further work to develop a more detailed strategy including the
development of commissioning frameworks for:
·
Information resources
·
Requirements within a PCT
·
Professional training resources
·
Development of curricula for medical and surgical
specialities
·
The development of undergraduate curricula for each
profession