Competences, education and support for new roles in cancergenetics services: outcomes from the cancer genetics pilot projects

Catherine Bennett Æ Hilary Burton Æ Peter Farndon

Published online: 23 May 2007

� Springer Science+Business Media B.V. 2007

Abstract In 2004 the Department of Health in collabo-

ration with Macmillan Cancer Support set up service

development projects to pilot the integration of genetics in

mainstream medicine in the area of cancer genetics.

In developing these services, new roles and responsi-

bilities were devised that required supporting programmes

of education and training. The NHS National Genetics

Education and Development Centre has worked with the

projects to draw together their experience in these aspects.

New roles include the Cancer Family Nurse Specialist, in

which a nurse working in a cancer setting was trained to

identify and manage genetic or family history concerns,

and the Genetic Risk Assessment Practitioner—a small

team of practitioners working within a secondary care

setting to deliver a standardised risk assessment pathway.

Existing roles were also adapted for a different setting, in

particular the use of genetic counsellors working in a

community ethnic minority setting. These practitioners

undertook a range of clinical activities that can be mapped

directly to the ‘UK National Workforce Competences for

Genetics in Clinical Practice for Non-genetics Healthcare

Staff’ framework developed by Skills for Health and the

NHS National Genetics Education and Development

Centre (2007; draft competence framework). The main

differences between the various roles were in the ordering

of genetic tests and the provision of advice on invasive

preventive options such as mastectomy. Those involved in

service development also needed to develop competences

in project management, business skills, audit and evalua-

tion, working with users, general management (personnel,

multi-agency work and marketing), educational supervi-

sion, IT, public and professional outreach, and research.

Important resources to support the development of new

roles and competences included pathways and guidelines, a

formal statement of competences, a recognised syllabus,

appropriate and timely courses, the availability of a mentor,

supervision and opportunities to discuss cases, a formal

assessment of learning and continuing support from

specialist genetics services. This represents a current

resource gap that will be of concern to cancer networks

and a challenge to providers of educational resources and

regional genetics services.

Keywords Cancer genetics � Competences � Education �Genetics education � Roles � Service development

Abbreviations

GRAP Genetic risk assessment practitioner

GPwSI General practitioner with a special interest

NICE National Institute for Health and Clinical

Excellence

NHS National Health Service

PCT Primary Care Trust

C. Bennett (&)

NHS National Genetics Education and Development Centre,

Morris House, c/o Birmingham Women’s Hospital, Edgbaston,

Birmingham B15 2TG, UK

e-mail: catherine.bennett@geneticseducation.nhs.uk

H. Burton

Foundation for Genomics and Population Health, Cambridge,

UK

P. Farndon

West Midlands Regional Clinical Genetics Service, Birmingham

Women’s Hospital, Birmingham, UK

123

Familial Cancer (2007) 6:171–180

DOI 10.1007/s10689-007-9127-y

Introduction

The development of genetics in mainstream medicine is

one of the main themes of the Department of Health’s (DH)

2003 White Paper on genetics [2]. It recognised the

importance of genetic subsets of disease within most areas

of clinical medicine and funded service development pro-

jects which would pioneer new services and generate

valuable clinical experience of genetics in mainstream

medicine. Seven service development projects jointly

funded with Macmillan Cancer Support formed an impor-

tant subset in which the development of services for risk

assessment and cancer prevention based on family history

risk could be piloted.

Developing services for cancer genetics is important

because of the increased risk of disease in relation to family

history in breast, ovarian, colorectal cancer and other rarer

cancers with possibilities for preventive action. Methods to

stratify individuals with family history into high, moderate

and population risk have been devised. This allows iden-

tification of those with single gene mutations such as

BRCA1/2 or HNPCC for whom substantial preventive

action such as mastectomy or regular colonoscopy might

be appropriate; those for whom enhanced surveillance

options would be advised; and others who need general

prevention advice and reassurance. As a result of the high

absolute numbers of people in the population with a family

history of common cancers, practitioners who are not

specialists in genetics will need to be involved in initial

assessment and advice for those with concerns. This

represents a new set of activities in the community and the

cancer genetics pilots looked at ways of setting up appro-

priate models of service delivery.

At a workshop in November 2006, facilitated by the

NHS National Genetics Education and Development

Centre, representatives from the cancer genetics pilots met

to discuss their experiences in developing new roles and

their main needs for educational support and resources.

They identified the types of activities undertaken (e.g.

clinical, administrative etc.); the main clinical and

non-clinical activities required for new roles in cancer

genetics—including competences developed or needed;

the resources required for staff to achieve the competences

and fulfil their new roles (including, but not limited to,

education); and barriers and challenges to implementing

new roles. For completeness the workshop was followed

by a two-part questionnaire designed to collect compara-

ble summary information from all projects (part 1) and

all individuals undertaking new roles (part 2). The

latter part collected information on role title, education

and professional background; clinical and non-clinical

activities/competences including information on how the

competences were achieved; whether formal statements of

competences were developed for the role; important

educational development factors and resources used or

developed in fulfilling the role; and any other comments.

Experience was contributed by six of the seven projects

and by 11 individuals working in new cancer genetics roles

in mainstream medicine, 10 of whom were practitioners

who did not have specialist genetics expertise.

New roles in cancer genetics

The cancer genetics pilots involved the development of a

variety of new roles, reflecting the different aims and

emphases of the projects. Table 1 summarises the

responses received from six of the seven pilot projects and

the main substantive new roles that they described.

All projects involved the development and testing of

new models for delivering cancer genetics services which

were centrally funded for 3 years, with the hope and

expectation that the services would subsequently be inte-

grated into local funding. They were primarily delivered

locally in a primary care or community setting with the

joint aims of increasing uptake and enhancing efficiency

through reduction of hospital visits and demand on the

specialist department. One project used telephone consul-

tations. All projects required non-genetics practitioners to

undertake risk assessment activities within agreed proto-

cols and with close supervision. Although new job roles

were given different names, the commonest pattern was

for nurses with experience in primary care, community

nursing, or, more often, cancer nursing to gain the nec-

essary cancer genetics competences. In two projects where

there was a particular emphasis on increasing uptake in

lower socio-economic groups and ethnic minorities, nurses

with substantial experience in community development

and in working with ethnic minority communities were

recruited.

Some projects undertook further development of spe-

cialist genetic roles in order to support the new practitio-

ners who had more limited genetics expertise. For example,

in one project a genetic counsellor was involved in the

setting up and support of the primary care clinic. In an-

other, a special part-time role was created for an individual

with substantial experience in cancer care and in the setting

up and running of a cancer family history clinic to take

responsibility for the education and supervision of non-

genetics specialist practitioners. In other projects support

roles were undertaken by consultant geneticists and genetic

counsellors from the genetics service as part of their

commitment to the project.

172 C. Bennett et al.

123

Competences in clinical cancer genetics for

practitioners in new roles

Table 1 shows that the majority of the new roles were

developed, as anticipated, in mainstream services. In the

following analysis we concentrate on the new roles

undertaken by practitioners who were not genetic special-

ists (i.e. those who did not have professional specialist

accreditation in genetics, whether as clinical consultants or

genetic counsellors).

The NHS National Genetics Education and Develop-

ment Centre and Skills for Health have been collaborating

to develop a competence framework for genetics in clinical

practice for non-genetics healthcare staff [1]. Each

competence describes how an activity relating to genetics

should be carried out (‘performance criteria’) and the

underpinning knowledge and understanding required to

undertake the activity.

Although the competences cover the whole of the

pathway for a patient with, or at risk of, a genetic disorder,

for any individual health professional only those genetic

competences relevant to their professional role will be re-

quired. Some competences will be widely applicable and

others will be relevant only to a small number of specialist

healthcare professionals.

The genetics competence framework was in its final

consultation stage as the workshop was being planned with

the pilot projects. Discussions with the projects showed

Table 1 Summary of information provided by projects and main roles developed

Project Focus of project New roles

In non-genetics services In specialist

genetics service

1. Teesside Cancer Family History

Service—Cancer Care Alliance of South

Durham, Teesside and North Yorkshire in

collaboration with South Tees Hospitals

NHS Trust and Newcastle upon Tyne

Hospitals Foundation NHS Trust

To develop a model for risk assessment and

counselling for families at risk of breast,

bowel and ovarian cancers

3 Genetic Risk Assessment

Practitioners (GRAPs)

2. South East London Genetics

Service—Guy’s & St Thomas’ Hospitals,

London in conjunction with Lambeth and

Southwark Primary Care Trusts

Provide a ‘whole systems’

approach—promote awareness of cancer

family history amongst the local

population and health care professionals.

Targeting black and ethnic minority

groups in deprived inner city London

boroughs of South East London. A

community based cancer family history

risk assessment service with a strong

emphasis on self referral

2 Macmillan Community

Clinical Nurse Specialists

Macmillan Cancer

Family History

Nurse Trainer

3. Oldham Primary Care Trust Taking service to primary care and

community setting

GP with a Special Interest

(GPwSI); Clinical Nurse

Specialist for patients with

family history

4. Somerset Coast Primary Care Trust, Avon,

Wiltshire and Somerset Cancer Network,

Cancer Service Users

To develop a new primary care led cancer

genetics service tailored for a rural

population, which aims to reduce

inequalities in breast, ovarian and

colorectal cancer service provision. It

explores a new service model that is

patient focused, provides services close to

home and reduces hospital visits and

pressure on genetics departments

Cancer Genetics Project Co-

ordinator; Primary Care

Genetics Nurse Specialist

5(a). The South West Genetics Service—St

George’s

To test the feasibility, accessibility, and

effectiveness of providing genetic nurse-

counsellor clinics in primary and

secondary care in the SW Thames Region

Cancer Genetics Nurse/

Macmillan Project Co-

ordinator

5(b). The South West Genetics Service—The

Royal Marsden Hospitals

To evaluate a telephone counselling model

for provision of risk assessment

Cancer Genetic Nurse

Counsellor

6. (Leeds) Yorkshire Regional Genetics

Service, North Kirklees Primary Care

Trust and Bradford Hospital NHS Trust

Improving access to cancer genetics services

for people from ethnic minorities and

lower socio-economic groups

Practice nurse; GPwSI

(resigned); Breast care

nurse/genetic counsellor

(50%/50%)

Genetic counsellor

working to set

up clinic in

primary care

Competences, education and support for new roles in cancer genetics 173

123

that the competence framework was equally applicable to

the work of the pilot projects and that their experiences

could be mapped directly to the competence statements in

the framework.

Table 2 therefore shows the competences from the

genetics framework in bold, with additional specific com-

petences identified by the practitioners as being important

for cancer genetics in light type.

Some competences were seen as being required for all

of the new roles (understanding genetics appropriate for

your area of practice; identify patients; gather family

information; recognise inheritance patterns; assess genetic

risk; refer patients to specialist sources of assistance).

Other competences were specific to the role expected of

a particular practitioner, for instance ordering genetic

tests and discussing invasive preventive options such as

mastectomy.

The projects highlighted the importance of being able to

use recognised guidance (e.g. NICE guidelines) and risk

assessment tools in determining population, medium and

high genetic risk as a key competence.

An additional competence set, ‘Discuss preventive

options with patients’, was added because preventive

measures are available for some patients. All new roles

were likely to give advice on prevention and might

discuss preventive options with patients (80%), although

some projects developed referral pathways with second-

ary care for screening and in one project, this was done

by genetic counsellors or consultants in genetics clinics.

Three respondents (30%) discussed prophylactic surgery,

although two of these said it would be discussed if

raised by the client before being seen by a genetics

colleague, and the third had a part role as a genetic

counsellor.

Table 2 Clinical competences required by non-genetics practitioners to fulfil new roles

The clinical competences required to fulfil the new roles Number requiring this competence/number responding

and % requiring this competence

Understanding genetics within your own area of clinical practice 10/10 (100%)

• Explaining purpose of consultation 10/10 (100%)

Identify patients with or at risk of genetic conditions 10/10 (100%)

• Language and cultural skills to raise awareness in a

community and to help patients to access the service

7/9 (78%)

Gather a multi-generational family history 10/10 (100%)

• Recognise the need for consents to confirm particular diagnoses in relatives 9/10 (90%)

Use a multi-generational family history to draw a pedigree 9/10 (90%)

Recognise inheritance patterns 10/10 (100%)

• Assessing/interpreting pedigrees 10/10 (100%)

Assess genetic risk 10/10 (100%)

• Including the use of recognised and appropriate risk assessment tools 10/10 (100%)

• Triage into population, medium and high 10/10 (100%)

Discuss preventive options with patients 8/10 (80%)

• Give advice on prevention 10/10 (100%)

• Discuss preventive management (mammography, colonoscopy) 9/10 (90%)

• Discuss prophylactic surgery 3/10 (30%)

Refer to specialist sources of assistance in meeting healthcare needs 10/10 (100%)

Recognise the indications for and the implications of ordering a genetic test 7/10 (70%)

• Provide genetic counselling 3/10 (30%)

• Order a genetic test for a patient 0 (0%)

• Initiate, undertake or order further family work (e.g. identifying the

appropriate person for mutation analysis, obtaining family

samples with appropriate consents)

3/10 (30%)

• Communicate the result 1/10 (10%)

Communicate genetic information to patients 6/10 (60%)

• Using language and cultural awareness skills 7/10 (70%)

Work with other agencies to provide support for patients 8/10 (80%)

174 C. Bennett et al.

123

Seven (70%) respondents agreed that recognising the

indications for and the implications of ordering a genetic

test was required for their role although two of these said

the patient would be referred on to specialist genetics

services. In this context of genetic testing, only three

respondents (30%) said they would provide genetic coun-

selling, and two of these specified that this would be at a

basic level (i.e. it was expected that patients would sub-

sequently be seen by colleagues within specialist genetics

services for further information, exploration of the issues

surrounding testing and for any genetic testing). Only three

respondents would initiate, undertake or order further

family work, and this might involve arranging blood stor-

age or discussing the most appropriate relative to test. In

most cases, these activities were carried out by specialist

genetics staff.

Six (60%) indicated the need for competence in com-

municating genetic information to patients. The fact that

this number was not 100% might indicate different

understandings of ‘genetic information’ in practitioners

from different professional backgrounds. A similar number

reported using language and cultural skills to raise aware-

ness in a community and to help patients to access the

service. Three quarters described the need to work with

other agencies in supporting patients. A good example of

this is the work with agencies involved in community

development to improve access for ethnic minority groups.

Supporting the gaining of competences for new

clinical roles

A number of important forms of resources for personal

development of competences were identified at the work-

shop. Through the questionnaire we aimed to assess the

importance of these across the range of projects, to identify

resources that were currently available and any that had

been developed by the projects. Table 3 gives a list of the

supporting resources with average scores (maximum 5) for

their importance and an indication of whether these were

available to new practitioners.

Support from genetics departments was considered the

most important factor for educational development and

most respondents said this was available to them. Two

projects said they developed consultation guidelines or

clinic proforma to steer and focus the consultation and

provide consistency across different project staff. Ongoing

support and mentorship included one-to-one sessions

with a genetics consultant or genetic counsellor. Projects

reported that clinical supervision or observation were

important either initially or throughout the project. The

opportunity to discuss cases was highly valued.

An example of a programme for training and support

developed by the Guy’s and St Thomas’ Project is given in

Box 1.

Box 1: Example of a programme for training and support

Initial training with attendance at an 8-day cancer genetics for health

care professionals course, attendance at genetics clinics and family

history clinics and the development and agreement of a learning

contract. Following a period of training, support and close

supervision in the clinics, the practitioner was assessed as being

competent to undertake the clinic alone through a formal process of

clinic observation and review of cancer risk in breast, ovarian and

colorectal cancer cases. A process of ongoing support and

supervision was then provided by review of risk assessments,

attendance at clinics, attendance at lectures and study days, and

ongoing provision of advice from genetic counsellors and

consultant clinical geneticists.

The availability of timely courses was seen as an

important priority. However, most respondents had not

been able to access nationally available (external) courses

and had to rely on training programmes organised locally.

Accessing the right course, at the appropriate level and at

the best time was an issue. This has implications for

resources for providing formal core genetics courses at a

national level:

‘‘I participated in a three day course in Cancer

Genetics but the educational level was very high and

that course was not of much help to me because I

took it at the start of my job when I didn’t know

anything about Genetics.’’

For most practitioners a mixed learning experience was

used and thought to be appropriate:

‘‘Competences were achieved by attending a course

in cancer genetics, reading articles and books, dis-

cussing issues with genetic counsellors and consul-

tants, attending cancer genetics clinic and doing

observations, mock sessions, conducting clinic under

supervision.’’

Respondents considered that understanding the scope of the

role and having a clear ‘syllabus’ for learning were

important for their educational development in the new

roles.

As job competences can be used to identify education

and training required for a particular role, those working in

new roles were asked whether formal statements of com-

petences had been developed for their role (Table 4).

Two projects did develop competence frameworks (see

Boxes 2 and 3) whilst others used the job description or

Competences, education and support for new roles in cancer genetics 175

123

advice from project leaders or the local genetics team as a

basis for identifying and meeting educational needs.

Assessment of competence or learning was also con-

sidered important. Five respondents felt their learning was

assessed but this was often informal. Respondents from one

project felt that more formal assessment would give them

reassurance about their achievement of the competences.

One project (which developed a competence framework)

used portfolios for collection of evidence and demonstra-

tion of achieving the competences.

Textbooks were less important and although widely

available, were sometimes at too high a level. Elec-

tronic courses were not available to respondents and

were not considered important for their educational

development.

Table 3 Importance and availability of supporting resources for developing competences

Resources to support the gaining of competences in genetics Importance for educational development Availability

Total score/number responding

and mean score (1–5, 5 max)

Available to

practitioner

Not available

to practitioner

(Total

respondents = 10a)

Support from genetics

departments

Ongoing support and mentorship 49/10 4.9 8 2

Clinic supervision and observation 49/10 4.9 6 2

Opportunity to discuss cases with

colleagues (including backup from

genetics and other networks)

49/10 4.9 8 0

Courses and training

programmes

Timely course (nationally available) at

the right level

48/10 4.8 2 5

Formal local programme of training 47/10 4.7 7 1

Assessment Assessment of learning 48/10 4.8 6 2

Definition of role and

educational

requirements

An understanding of the scope of the role 46/10 4.6 4 5

A syllabus or curriculum (‘‘don’t know

what need to know’’)

44/10 4.4 3 5

Other educational

resources

Textbooks 41/10 4.1 8 0

Educational course electronically

available

30/9 3.3 0 7

a Although there was a total of 10 respondents, not all respondents specified whether or not each resource was available to them, therefore

‘available’ and ‘not available’ do not add up to 10 for each item

Table 4 Availability of formal statements of competences

Were formal statements of

competences developed?

Number of respondents

(total = 10)

Detail provided

Yes 5 Competence framework developed (Box 2)

‘‘Based on a level 3 genetics course’’

Competences for running Macmillan Cancer Family History Clinics without

supervision (Box 3)

‘‘Job description’’

No 4

Not specified 1 ‘‘Outlined in job description but not otherwise formally listed. Appraisalgave format for goal setting’’

Box 2: Competency framework for genetic risk assessment

practitioner

Theme: organisation

• Governance

• Succession planning

• Inequalities in care

• Political policy awareness

• Research and practice development

• Audit

• Managing resources

Theme: self

• Self management and professional accountability

• Leadership

Theme: multi-professional and organisational team working

• Team working

176 C. Bennett et al.

123

Non-clinical activities

In addition to clinical activities, many of the projects in-

volved their new practitioners in a wider set of activities.

Some, such as business planning, arose from the fact that

these were special time limited projects that would even-

tually require ongoing local support. Others, such as

information technology or user involvement, were activi-

ties that would usually be required in a wide range of

services. Table 5 gives details.

Responses from practitioners indicated that a variety of

methods were employed by the project team to put together

the necessary expertise. For example, project management

experience was gained from the local PCT, and advice and

support on budget management from the local NHS Trust.

Business planning was supported in some cases by PCTs or

the local cancer network though reorganisation and

changing roles within the health service often made things

difficult. Projects were not set up with audit and evaluation

support and again advice was sought where possible with

projects using public health teams, public health observa-

tories, local socio-economic statisticians and economists

and support from the programme’s external evaluation

team at Nottingham University. Working with users was

also an unfamiliar area for a number of projects and again

help was sought on an ad hoc basis. Some teams were able

to gain support from Trust patient and public involvement

leads or by tapping into other user groups. Other teams

learned as they went along. One project, however, com-

mented that it would have been helpful to have had a

clearer sense at the outset of the role of users, how they can

be recruited and how their input can be maximised.

On the whole, projects did not have formal experience in

such areas as marketing, educational provision, public and

professional outreach and IT, but brought in or developed

skills as they went along depending on availability within

the team. For example, one project used a local commu-

nications teams to assist with marketing and awareness

raising sessions with the media, and another used a nurse

with previous experience in community outreach.

Barriers to the development of new roles

Projects were asked about the main barriers to the

achievement of these new roles (Table 6). The most

important factor was the climate of organisational change

that made it very difficult to identify and engage key

Box 2: Competency framework for genetic risk assessment

practitioner (continued)

Theme: supportive care

• Informing and involving patients

• Meeting the clinical needs of patients at increased risk of cancer

• Meeting the emotional needs of patients at increased risk of cancer

• Interpersonal skills

Theme: foundation knowledge

• Basic genetics

• Cancer genetics

• Common site-specific inherited cancers

• Family history collection & risk assignment

• Rare inherited cancers

• Genetic testing

• Genetics & society

(c) Northern Genetics Service and South Tees Hospitals NHS Trust

Box 3: Competences to be achieved to run Macmillan Cancer Family

History Clinics without supervision

Manage clinic appropriately:

• Explain purpose of the clinic to the patient.

• Draw an accurate family tree using pedigree programme.

• Assess cancer risk using tools provided by the Clinical Genetics

Department.

• Plan patient management using the tools provided.

• Explain risk and management to the patient.

• Explain risk and management to GP.

• Demonstrate knowledge of when to seek advice and when to refer to

screening/Genetics.

Demonstrate ability to accurately assess cancer risk using tools

provided by Clinical Genetics Department.

Forms for assessment of competences were supplied and a

required standard (80% accuracy) was stated.

(c) Guy’s & St. Thomas’ Hospitals Macmillan Pilot Project

Table 5 Involvement of practitioners in non-clinical activities

Non-clinical area Number/number respondinga

(percentage) of practitioners

involved

Education 9/9 (100%)

Public and professional awareness 9/9 (100%)

Development of IT 9/10 (90%)

User engagement 9/10 (90%)

Marketing 8/10 (80%)

Audit/evaluation 7/9 (78%)

General management 6/8 (75%)

Supervision 7/10 (70%)

Multi-agency work 6/10 (60%)

Project management 5/9 (56%)

Personnel management 4/10 (40%)

Research 4/10 (40%)

a Not all respondents answered each question

Competences, education and support for new roles in cancer genetics 177

123

players within the main stakeholder organisations. Sec-

ondly, the uncertainty of ongoing funding made it difficult

to recruit staff and ensure their full personal development

with the underlying fear that ‘‘short term skills gained by

the project would be lost’’. Where organisational resistance

was a factor, this was most likely to come from the pro-

vider trust or primary care rather than from within the

cancer specialty or genetics services.

Discussion

Genetics and family history are recognised as being

important factors in risk for common cancers—with the

management of patients concerned about a family history

of breast cancer, for example, now being the topic of de-

tailed guidance [3]. Guidance states clearly that ‘‘When a

woman presents with breast cancer symptoms or has con-

cerns about relatives with breast cancer, a first and second

degree family history should be taken to assess risk be-

cause this allows appropriate classification and care’’. The

cancer genetics service development projects were pilots in

developing practical models for the necessary initial risk

assessment to ensure subsequent management according to

assessed risk in the appropriate secondary or tertiary set-

ting. They addressed the need for appropriate access to all

with concerns and to develop a system that was clinically

safe but did not overstretch specialist services.

Many practitioners from outside specialist genetics have

little or no education in genetics (either in the context of

common disease, or rarer inherited disorders) during their

initial training or continuing professional development [4–

7]. Thus, the requirement for risk assessment to take place

in primary care, based on family history, falls outside

the current competences. These gaps are beginning to be

addressed but it will be some time before they can be

considered to be part of the ‘core’.

The service development projects have demonstrated

that systems can be developed with pathways of care

involving professionals who are not part of the genetic

specialist service undertaking initial risk assessment and

management. They do, however, need specialist support

both in the setting up and supervision of such a service.

The development of these roles needs to be undertaken in a

systematic way and important steps in this process as well

as key factors for their achievement are set out below.

Pathways and guidelines

The first step is the development of clear pathways and

guidelines. The Teesside project, for example, provides a

model for a single network referral pathway based on

standardised risk assessment that provides a basis for

decisions about clinical screening.

Defining competences for new roles

Competence frameworks describe the activities that cover a

patient pathway, practitioner role or specialty area. Indi-

vidual competences within a framework describe the

activities—in this case relating to genetics—and indicate

how they are carried out, with underpinning knowledge,

understanding and attitudes.

All respondents agreed that the clinical competences

outlined in Table 2 described the activities performed

within their new roles. Through their practical experiences,

the projects have confirmed that the Genetics Competence

Framework is relevant in practice and that the genetics

competences are adaptable to patient pathways in main-

stream medicine cancer genetics. These competences will

need to be used when job descriptions are developed in

future cancer genetics services. Only those competences

relevant to the professional role in question need to be

incorporated and the particular disease area, setting or

client group will need to be considered. For example, in the

area of cancer genetics, competences will need to relate to

common site-specific inherited cancers and an under-

standing of the inter-relationship of primary care, specialist

genetics services and cancer services.

The wide scale use of competences within healthcare is

relatively new. Agreed competences can be used by indi-

viduals to develop their own knowledge, skills and per-

formance; by education and training providers to identify

learning needs, define learning outcomes and specify

qualifications; and by organisations to set standards and

improve the quality of services they offer [8]. National

Workforce Competences developed by Skills for Health

include a description of the steps involved in carrying out

Table 6 Challenges and barriers to the development of new roles

Main challenges and barriers Mean score

(1–5, 5

max)

Number responding

(Total

respondents = 9)

General organisational change 3.7 7

Organisational resistance from

Primary care 2.9 7

Genetics services 1.4 7

Within cancer specialty 2.0 6

Provider trust 3.3 7

Lack of ongoing funding 3.0 7

Difficulties in recruitment and

retention of staff

1.7 6

Lack of expertise (and available

support) in project

management or general

activities

1.4 7

178 C. Bennett et al.

123

each activity (‘performance criteria’) as well as the

underpinning knowledge and understanding required. This

level of detail has not usually been included at the role

level for individual practitioners. Although five practitio-

ners responded that formal statements of competences had

been defined for their new roles (Table 4), in many cases

job descriptions or less formal discussions with project

staff were being used and only two competence frame-

works were provided. Explicit statements of what is in-

volved in new roles (activities along the patient pathway)

and how these should be achieved will be vital to helping

new practitioners understand their role and to plan a

programme of personal development to achieve these

competences. As examples of cancer genetics competences

are specified for particular roles, the opportunity should be

taken to publicise and share them.

Resources to achieve competences

Building on an understanding of the competences, the next

step will be to develop an outline of the key points of the

course of study and personal development. It would be

helpful to achieve this at a national level, again by con-

sensus. Resources to meet these competences and course

outlines should then be identified and developed where

necessary.

How is this educational challenge to be met? Timely

courses (nationally available) at the right level were seen as

very important to the educational development of practi-

tioners working in new roles, but were not avail-

able—either at the right time or the right level—to most

respondents. The development of additional suitable

courses is one solution, but funding to develop and run

such courses would need to be provided, as well as funding

to support practitioners to attend. This might be difficult at

present when education budgets are increasingly threatened

in the NHS. Electronic courses are sometimes suggested as

a potential solution to the need to provide courses on-

demand, more regularly or to distant participants [9, 10].

None of our respondents had used an electronic course and

they did not perceive this to be a relevant solution to their

educational development. This perhaps reinforces the point

that use of electronic courses must be in the context of

available time for study and backed up by expert tuition

and educational support.

Support from specialist genetics services

For all projects, the most important element in individual

learning was the support of the genetics department,

including ongoing direction and mentorship, clinical

supervision and observation and continuing opportunities

to discuss cases with colleagues and with experts at the

genetics centre. Two projects did appoint genetic coun-

sellors to undertake and supervise the development of

nurse practitioners and in other services this was under-

taken as part of the role of consultant geneticists or genetic

counsellors associated with the project. For all projects, it

was important that the relationship of practitioners with the

specialist genetics department was formalised.

Such processes are clearly very demanding for specialist

genetics services, which already experience many requests

for education from primary care and a wide range of sec-

ondary care specialties in addition to their contribution to

pre- and post-registration training of medical, nursing and

other health professionals. Similar models requiring service

support are emerging in other clinical areas such as oph-

thalmology, renal and cardiac services. An initial conclu-

sion is that widespread development of mainstream

genetics services will need to be supported by increased

staffing levels in the specialist genetics services. This will

undoubtedly be part of the solution. However, the high

level of support provided by specialist services for these

projects might not be necessary for all in the longer term. It

will be important that specialist services provide education

and clinical support where they, alone, have the expertise

and that they work in conjunction with more general sup-

port at primary or secondary care level. For example, if

national competences, course outlines and appropriate

resources were available, an educational supervisor could

provide guidance on the general range of resources to be

accessed, leaving specialist services to concentrate on

ensuring clinical supervision and providing support for

complex cases.

For cancer genetics services it will be important for

cancer networks to work with specialist genetics services

and the NHS National Genetics Education and Develop-

ment Centre to develop a strategy for further developing

practitioners in mainstream services that makes best use of

available expertise on a national basis.

Conclusions and practice points

The pilot projects have highlighted the educational and

support needs of staff working in new roles in cancer

genetics. The NHS National Genetics Education and

Development Centre will work to disseminate information

from such projects, including job descriptions and com-

petence frameworks for different roles. It will also support

the Skills for Health competences and promote the devel-

opment of national resources. We hope that future cancer

genetics service developments will be able to build on

these resources to continue to provide high quality patient

care where activities involving genetics are integrated into

services.

Competences, education and support for new roles in cancer genetics 179

123

Acknowledgements The authors would like to acknowledge the

financial support of the Department of Health in funding the NHS

National Genetics Education and Development Centre and to thank

the cancer genetics pilot projects for sharing their experiences within

the workshop, completing the questionnaires, and for sharing

resources.

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Practice points

• Identify the patient pathways for your service and develop

consultation guidelines.

• Identify existing competences or develop competences appropriate

for job role.

• Use the agreed competences for the role to identify an individual

practitioner’s education and training requirements.

• Appoint a trainer for supervision of the educational development

plan.

• Identify resources to achieve and assess competences and ensure

these can be accessed.

• Ensure that specialist genetic support is available for supervision,

including opportunities to discuss cases.

180 C. Bennett et al.

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