GeneSense: Supporting Genetics in Healthcare

1
GeneSense Supporting Genetics in Healthcare
Education
Andrew Evenden, Karen Gresty, Heather Skirton,
Gill Green Laura Lindsey. Faculty of Science
Faculty of Health and Social Work. University of
Plymouth, Drake Circus, Plymouth, Devon. PL4 8AA
Introduction The GeneSense education resource
(www.genesense.org.uk) forms part of the first
University of Plymouth Teaching Fellowship
project scheme. The project team is a
collaboration between two separate faculties and
comprises individuals with both academic and
healthcare practice expertise. GeneSense is a
free online resource designed to enable the
support of genetics education in modern
healthcare curricula and practice contexts. It is
being developed with an action research approach
in response to recent changes in healthcare
genetics education policy. Our aim is to both
develop and support competent practitioners who
can best meet the challenges of 21st century
healthcare.
Background Changes in government policy and
advances in scientific technology are powerful
drivers for the design and revision of curricula
for healthcare education. At the forefront of
recent initiatives was the UK Government White
Paper of 2003 Our Inheritance, Our Future -
Realising the Potential of Genetics in the NHS.
Such developments challenge staff involved in
educating healthcare professionals to try and
incorporate extra material into existing full
curricula, that is both theoretically sound and
informed by practical knowledge and experience of
a range of stakeholders (including service
users).
Pedagogical Aspects As one of the founding
principles of GeneSense was a collaborative
approach, we decided to use an action research
methodology. Four defining characteristics of
action research outlined by Denscombe (1998) and
utilised by Gresty Cotton (2003), make it a
particularly appropriate research strategy to
adopt. In this context, these key features can be
defined as 1. A practical approach to
incorporating contemporary genetics in to the
healthcare curriculum. 2. A change in current
practice of curriculum design and delivery with
associated evaluation. 3. A cyclical process
involving repeated consultation, resource
development and evaluation. 4. Participation of
multiple stakeholders. GeneSense is intended to
highlight the role that a pedagogical action
research project can play in addressing a
curriculum problem utilising information and
communications technology. It will also act as a
template for on-line learning resources for other
staff, where there is a need to develop a
contextualised knowledge base for their students.

Progress To Date. A survey of health information
websites and team discussion resulted in a basic
design brief for the GeneSense resource. Further
brainstorming sessions within the project team
resulted in the model illustrated in Figure 1
GeneSense provides genetic information in the
form of practice-centred case studies set at
different life stages (Figure 2) and also
addresses a framework of common core competencies
in genetics for nurses midwives. From these
competency standards, we have devised a series of
learning outcomes form level 1 to level 3 which
will guide student engagement with the resource
and facilitate continuing professional
development. In addition, through the collation
of a stakeholder contact database, a dialogue has
commenced between academics, specialist
practitioners and user support groups to further
develop the resource. Specific survey information
was gathered from student nurses, student
midwives and qualified practitioners from these
professions to determine attitudes towards
genetics and internet education resources. In
particular we sought information regarding what
they would like to see included in a focused
genetics education site. Information from this
survey and other sources has already informed the
development of GeneSense with respect to
presentation and accessibility. GeneSense has
been live since spring 2004, and active
contributions are sought via feedback links on
the website as well as e-mail (genesense_at_plymouth.
ac.uk).
Figure 2 A Typical GeneSense Case Study Dennis
is a frightened young man. At 27 , he knows
about the family history of bowel cancer.
His 4 sisters urge him to have a screening
colonoscopy but he cant bring himself to go
through with it. Denniss father, John, died from
metastatic colon cancer at the age of 47 years.
Dennis and the other children watched him die in
terrible pain he refused to go to hospital or
even have the district nurse call in to give him
painkillers. John had been suffering for year,
his children knew all too well the sight of blood
around the toilet bowl, but it was not until he
had a bowel obstruction that John was taken to
hospital, to have a colectomy and colostomy. The
bag was a badly-kept family secret. Dennis has
been passing blood from the rectum for years, but
also refuses treatment on the grounds that his
father died after having the operation. Other
members of the family have been diagnosed with
multiple bowel polyps, a condition known as
Familial Adenomatous Polyposis (FAP), and
rectal bleeding is a sign of that condition. If
the polyps are not removed, cancer of the bowel
is almost inevitable. Dennis has a sister who has
already had surgery to remove her large bowel and
she feels it has saved her life. The GP, practice
nurse, genetic nurse and his family all try to
persuade Dennis to have a colonoscopy. He agrees,
but does not attend the appointments. Dennis and
his girlfriend decide to start a family. They
have a daughter, and Dennis is so concerned to be
around to bring her up, he goes for his
colonoscopy. Heavy sedation helps him get through
it, but afterwards he is told he already has a
tumour, as well as hundreds of polyps. Surgery is
urgently required. The outlook is not good, but
amazingly Dennis does very well and 3 years later
is offering to talk to other families about the
benefits of having screening. He is determined
his own daughter will not have the same fear, and
regularly shows off his stoma and bag.
1
2
Each case study explores
Life Stage
1
3
2
Genetic Theory
Social Legal Ethical Issues
3
2
Practice Issues
4
3
4
Figure 1 Outline Structure of the GeneSense
Website
The Future GeneSense has already generated much
interest and excitement in the health community
in the South West and subject to a full
evaluation, we are seeking to embed it into
existing programmes and curricula. Additional
funding opportunities for research are being
targeted to further the scope of GeneSense as an
e-learning resource and to expand into the areas
of e-health and NHS service user involvement.
References Denscombe M. (1998) The Good Research
Guide For Small-scale Social Research Projects.
Open University Press, Buckingham. Gresty K.A.
Cotton D.R.E (2003) Supporting biosciences in the
nursing curriculum development and evaluation of
an online resource. Journal of Advanced Nursing
44 (4) 339-349.