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Guidance for developing services involving genetics

Incorporating appropriate genetics activities into non genetics healthcare specialities can assist in the identification, diagnosis, prognosis, management and treatment of a number of conditions. This so called 'mainstreaming' of genetics may occur through joint clinics with genetics professionals or by developing the roles of existing healthcare professionals to include genetics activities.

A number of reports developed by the PHG Foundation have identified the key considerations that should be made when undertaking the development of a service incorporating genetics activities:

Genetics and mainstream medicine: service development and integration - Dr Hilary Burton, PHG Foundation

Heart to Heart: inherited cardiovascular conditions services - Dr Hilary Burton, PHG Foundation

Genetic ophthalmology in focus: a needs assessment and review of specialist services for genetic eye disorders - Dr Hilary Burton, PHG Foundation

Service development toolkit

The sections below present a toolkit for those who are developing services for patients with or at risk of genetic conditions. The toolkit is not intended to be a complete guide to service development; you may also want to consult generic service development resources and expertise within your own organisation.Previous service development initiatives in genetics have found that these are the key areas that should be considered when planning service developments.

You can read about how the toolkit was developed. We also have examples of resources to use when developing a service.

 

Planning the service

The pilot projects identified a number of important steps in the planning process for a new role or service.  They highlighted a number of challenges and adopted a range of possible solutions.  Subsequent sections of the Toolkit also cover important areas that may need to be considered during service development.

 

1.1 Assess the need for the service

What methods and tools may be used to assess need?

Assess core genetics skills of relevant healthcare professionals and the need for support tools e.g. referral pathways, guidelines, trigger lists and protocols.

 

1.2 Allow for a long lead-in time

A number of service planning activities can take longer than anticipated, including:

 

1.3 Draw on existing resources

Adapt existing documentation where available rather than developing new documents from scratch. For example, adapt existing literature, protocols or guidelines from genetics services.

Consider whether existing services within the organisation might be used:

 

1.4 Investigate availability of clinic space and office space

 

1.5 Plan an identified point of contact for queries

 

1.6 Plan to assess the impact of the service

Consider the workload and administrative support needed for data collection and analysis:

What methods and tools may be used to assess impact?

What outcome measures might be useful?

How can the impact of education provided to support the service be assessed?

Staffing Issues

The pilot projects identified a number of issues surrounding the recruitment and retention of staff and their training.  They also identified issues to do with changing roles.  Staffing issues were considered crucial to the success of the new role or service and should be considered early in the planning process.

 

2.1 Recruitment and retention

It may be difficult to recruit to part time or short (fixed) term posts, or to 'unusual' roles outside normal career progression, registration requirements or professional development routes.

For staff in new, unique or unusual roles, consider the following:

 

2.2 Required competences and skills

Identify the core skills and competences needed for the role. Make use of existing frameworks, e.g. the genetics competences which are linked to the NHS Knowledge and Skills Framework (KSF).

For new roles, it may not be possible to recruit staff who already have the appropriate skills. Consider which skills are essential at recruitment and which can be developed in post. Consider how to ensure practitioners are competent as new skills are acquired.

 

2.3 Training needs of service staff

Carry out an educational needs assessment to identify training needs:

 

2.4 Changing roles

Changes made to the role of healthcare professionals or administrative staff must be recognised and supported. For example, additional duties added to a role need dedicated time. Managerial involvement is essential e.g. for updating job descriptions, job plans and KSF outlines. Changes in role need to be supported by education and training, with appropriate assessment. Expanding the role of one member of staff may meet with resistance from other staff.

 

Stakeholder involvement

The involvement of relevant stakeholders was considered a key factor for success of the pilot projects.  The pilots explored a number of ways to identify and involve key stakeholders.

3.1 Identify key stakeholders

How can relevant stakeholders be identified?

Who might be relevant stakeholders?

 

3.2 Involve stakeholders in designing the service and materials

Involvement in planning and design:

Involvement through piloting and feedback:

What methods can be used to involve stakeholders?

How can patient and community involvement be facilitated?

 

Working with genetics departments

The experiences of the pilot projects showed that it is important for those developing new roles and services to liaise with their regional genetics centre at an early stage so that involvement and financial implications can be discussed.

4.1 Regional genetics centres (RGCs) may be able to provide clinical support for staff in new roles or genetics roles outside RGCs

A formal time commitment from the genetics department may be required, for example for:

Staff may benefit from attending clinical meetings and seminars in the genetics department. Named support (management and clinical) should be considered.

 

4.2 Regional genetics centres may be able to provide information support

Patient information leaflets may be available from RGCs. RGCs may be able to provide specialist genetics input to the development of information resources such as websites for health professionals.

 

4.3 Regional genetics centres may be able to provide educational support

RGC staff may be able to provide genetics education for staff in new roles, such as providing tutorials and advice on reading and materials for self study. RGC staff may also be able to provide educational sessions for other health professionals.

 

Working across specialities

Different specialties have different cultures and working practices. However, patients benefit from co-ordinated care and the experiences of the pilot projects showed the importance of considering the implications of working across specialties when developing new roles and services.

 

5.1 Cross-specialty working can provide a more streamlined service for patients, but consider workload implications

Involvement of health professionals from the relevant specialty can result in a more holistic service for patients, but increased awareness can increase demand on a service which must be planned for. Administration across specialties may be a challenge. A new service may not be a priority for staff predominantly working in another role allocate sufficient staff time for training and development as well as for service provision.

 

5.2 The relationships between people in different specialties and between departments is important for successful service development

Build on pre-existing clinical and research links (for example, between regional genetics centres and other services) where possible. Develop links with interested clinicians in other specialties.

 

5.3 Focus specialist input where it will have most impact

In multi-disciplinary clinics, examine the case load and consider which specialists need to be available regularly and which can be available on an ad hoc basis.

 

5.4 Ensure new services do not clash with pre-existing services

Consider the availability of staff across different services before planning clinics.

 

5.5 Support health professionals taking on new roles

Demonstrate the relevance and benefits of the service clearly - education and training may be required. Face-to-face explanation of new service or role can promote understanding and uptake. Provide sufficient staff time for the new service development - lack of time can reduce engagement with a new initiative, reduce uptake of training and be a barrier to taking on additional roles.

 

5.6 Consider differences in professional cultures across specialties and services

Differences between professional cultures may be a barrier to multi-disciplinary working which need to be understood and overcome. Genetics services involve working with families and the familial implications of disorders, which may not be the usual practice of other specialties. The role of non-medical professionals may differ between specialties, for example, genetic counsellors may have clinical and leadership roles that are not mirrored in other specialties.

 

Working with healthcare organisations

The experiences of the pilots showed the importance of identifying relevant national and local policies and guidelines and also the importance of considering the differences between organisations at an early stage.

6.1 Comply with national requirements

The UK Genetic Testing Network advises the NHS on genetic testing across the whole of the UK and is developing testing criteria which have to be met before DNA testing for an individual patient can proceed. There are NICE guidelines for some conditions, including familial breast cancer and familial hypercholesterolaemia. There may be relevant National Service Frameworks or other policy or guidance.

 

6.2 Comply with local policies and guidelines

Many developments will be covered by policies and guidelines, for example:

 

6.3 Consider the implications of different protocols and systems in different organisations

Clinical notes and medical record systems. Issues may include:

Ordering investigations, testing and reporting procedures. Staff protocols; e.g. is it possible to set up a nurse-led clinic template on the hospital system to register patients?

 

Working with communities - cultural awareness

Many of the pilot projects involved raising awareness within local communities or improving access to services. They identified factors which can influence success when working with different communities and highlighted issues of cultural awareness that may need to be considered when planning a service.

 

7.1 Knowledge and awareness of genetics

Different communities have different knowledge and awareness of genetics and genetic conditions. Projects found that there is low uptake of genetic services from some communities.

The views of service users are important in establishing how services can be made acceptable and accessible for community members. There may be a culture of stigma or secrecy surrounding genetic conditions in a community.

 

7.2 The influence of community and religious leaders and the older generation

Religious leaders can influence beliefs about inheritance. Members of some communities will take guidance from community or religious leaders when addressing medical issues.

The older generation can influence community views on genetics. The superstitions, myths and stories in a community may also be important.

 

7.3 Language factors

There may be a need for information resources in different languages. People whose English is sufficient for day-to-day purposes such as booking appointments may struggle to discuss genetic concepts in English.

Genetic concepts may not translate easily into some languages; some communities do not discuss genetic concepts and therefore the necessary vocabulary does not exist in the community. It can be beneficial to have staff who speak the relevant community languages.

 

7.4 Staff factors

People may be more at ease with someone from their own ethnic background and/or of the same sex. It can be beneficial to have staff who speak the relevant community languages.

 

Communication

The pilot projects demonstrated the importance of communicating clear information about a new role or service to the relevant people and organisations. They identified important factors in promoting the service, explaining the role of genetics in clinical care and communicating genetic information with patients and other healthcare professionals.

 

8.1 Promoting the service

Disseminate information about the service (clinic / education / resource):

Establish and use key contacts:

Draw on existing local meetings, networks of practitioners or websites to disseminate information:

Have a recognisable service identity:

Develop standardised proformas and project information:

 

8.2 Explaining the importance of genetics in clinical care

It may be necessary to raise the profile of genetics with target groups. Opportunities for raising the profile of genetics service may include:

 

8.3 Communicating genetics with patients and healthcare professionals

Health professionals should use clear and basic language when talking about genetics. Distinguish between 'genetics' and 'the genetics department' to avoid confusion. Don't assume prior knowledge when talking about genetics. Understanding of 'genetics' will vary with knowledge and personal experience; people have different beliefs about genetics and inheritance.

 

Providing online information

The pilots identified a number of ways to maximise success and 'smooth the way' when providing websites and online information about a new service.

 

9.1 Comply with national and local policies and procedures

Seek advice from others responsible for web services, for example the medical illustration team, regional genetics service web manager or your organisation's web team.

 

9.2 Ensure that web-based information is suitable for your target population

 

9.3 Provide information within (or linked from) a website already used by the target audience rather than creating a new site

Examples include PCT, hospital or genetics department websites.

 

9.4 Allow for a long lead-in time for design and set-up of web resources

 

9.5 Follow good practice in web design

 

9.6 Plan a maintenance and updating strategy for any web materials developed

 

9.7 Plan ways to handle the enquiries generated

Providing online information about a service can lead to increased enquiries. How will these enquiries be accommodated?

 

Providing education for health professionals

Some of the pilot projects provided education for other health professionals. Where education is provided to support a service, they identified some key factors for success. Training for service staff is covered in the section on staffing issues and providing information about the service is covered in the section on communication.

 

10.1 Use existing educational opportunities, networks and training forums

 

10.2 Match training to the learning needs and interests of the learners

 

10.3 Decide what topics and content to include

 

10.4 Provide clinically relevant, active learning

Match training to existing curricula and learning objectives. Use cases to illustrate key points, demonstrate relevance and interest health professionals. Try visiting Telling Stories Understanding Real Life Genetics for patients' stories.

Use existing teaching resources rather than developing new ones and incorporate active learning into the training session. For example, discussing cases, observing relevant clinics, role play etc.

Consider the room and facilities when planning the type of educational delivery e.g. seminar, workshop or lecture.

 

10.5 Make appropriate use of clinic experience or observation

Observation of clinics may be useful in certain targeted cases. For example, Specialist Registrars coming into the genetics department for training may serve as a useful link between genetics and their speciality. Scheduling constraints may make observation impractical.

 

10.6 Evaluate the effectiveness of education

Use feedback forms to evaluate sessions.

Questions might include:

Consider pre- and post- outcomes measures to demonstrate effectiveness, for example, referral rates.

Consider assessment:

 

10.7 Tips for organising educational sessions

Setting up a training session can be very time consuming. Activities include designing flyers, promoting the sessions, administering the registration process, producing attendance lists, evaluation, liaising with speakers, collecting presentations, preparing and distributing handouts etc.

Consider the timing of courses:

Consider the need to pay speakers an honorarium and cover travel expenses.  Also consider: