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?
- Patient satisfaction questionnaires
- Focus groups
- Feedback from education sessions
- Literature review
- Retrospective audit of practice / reviewing recent clinical records and estimate likely demand from population data
- Internal review by clinical genetics department / number of referrals to genetics.
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:
- Making the necessary contacts(see section on stakeholder involvement)
- Promoting the project (see section on communication)
- Collecting baseline data to enable impact to be demonstrated
- Setting up meetings can take a considerable amount of time
- Face to face meetings are costly in time to arrange and travel time but can have a greater impact than other communication methods, especially initially
- Change takes time - adapting to new ways of working and growing new patient pathways.
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:
- Equipment: Can existing equipment be used?
- Websites: Contact your medical illustrations team, regional genetics service web site manager or your organisation's web team for information and advice. Consider adding to an existing web site (such as a genetics department or Trust web site) rather than creating a new site.
- Patient Information: Leaflets may be available from NHS clinical guidance website, regional genetics centres or your communications department. Your communications department may be able to help with providing patient information leaflets in appropriate languages and accessible formats.
- Use or adapt existing audit mechanisms; contact your organisation's audit team.
1.4 Investigate availability of clinic space and office space
- It can be very difficult and time consuming to find clinic space and therefore management support is essential.
- If the clinic is held in an area of the hospital dedicated to other treatments, this can worry patients.
- Having to rotate clinic locations because of lack of space can cause disruptions, delays and staffing issues.
- Is staff office space also required?
- Is access to administrative support also required?
1.5 Plan an identified point of contact for queries
- Health professionals or patients will have questions about the service and need clear contact information.
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?
- Patient satisfaction questionnaire.
- Website counter.
- Audit of uptake and outcomes; compare audit before / after service in place.
- Record all queries and referrals for a time period (and compare across time).
What outcome measures might be useful?
- Does the intervention result in increased referrals to clinical genetics?
- Is there a difference in patient satisfaction?
- Does the intervention reduce waiting times?
- What is the cost?
- Increased efficiency - have the number of patients seen, waiting times for investigations and appointments or non-attendance rates changed?
- How many genetic test requests are sent through clinics?
- When working with other specialties, consider using their existing targets and outcome measures.
How can the impact of education provided to support the service be assessed?
- Use feedback/evaluation forms. Questions might include - was the content relevant and appropriate; did the session meet your learning needs; did the session meet your expectations; will the session increase your competence / improve your practice?
- Consider assessment. Assess impact of education on knowledge and clinical competence of healthcare professionals - e.g. by interviews and questions, clinical observation or role play. Assess against recognised competences (e.g. the competences of the 'standard practitioner' of the nursing, midwifery and health visiting genetic competencies; the Genetics Competences).
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.
- Consider secondments or sharing posts with other services.
- Consider the time and costs of advertising posts, and the most appropriate places to advertise nationally and locally e.g. NHS Jobs, jobs.ac.uk and relevant specialty publications.
For staff in new, unique or unusual roles, consider the following:
- How will staff absences be covered?
- Retention issues - staff changes can cause significant disruption, especially in new roles where extensive initial training may be required.
- Opportunities for professional development and promotion (may have an impact on staff retention).
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:
- How will training needs be met?
- What involvement will regional genetics centre staff need to have - in training, supervision of practice or practitioner attendance at genetics clinical meetings?
- Training needs protected time
- Training needs funding
- Providing opportunities for staff to gain a formal qualification or accreditation enables recognition of skills gained.
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.
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?
- Conduct a scoping exercise
- Identify people via an initial contact person
- Consult organisational Internet and Intranet sites (e.g. PCT or Trust)
- Use PCT or Trust email systems.
Who might be relevant stakeholders?
- Patients, patient self-help groups, community leaders and community members
- Line and senior managers, particularly at board level
- Clinical personnel e.g. clinical geneticists, relevant specialist teams, healthcare professional forums, GP practices, primary care providers, secondary care experts, those who will be involved in the planned service
- Representatives of relevant organisations e.g. service improvement manager at the strategic health authority; primary care trust board, professional executive committee (PEC), education team, communication forums or librarians)
- Representatives of educational groups e.g. GP vocational training scheme co-ordinators.
3.2 Involve stakeholders in designing the service and materials
Involvement in planning and design:
- service design (pts and staff)
- document design
- identifying learning needs and planning education programmes.
Involvement through piloting and feedback:
- pilot leaflets
- pilot questionnaires
- check website content acceptable
- feedback on clinical protocols and tools e.g. family history questionnaires
- discuss workload implications.
What methods can be used to involve stakeholders?
- Arrange face-to-face meetings with key contacts (e.g. senior management) where possible for greater impact
- Focus groups.
How can patient and community involvement be facilitated?
- Address issues of anonymity, confidentiality, consent
- Choose a convenient time and venue. For example, avoid religious and other holidays
- Consider the need to provide emotional support should any participants become distressed
- Consider incentives such as refreshments, food, payment
- Consider ways to present the topic in order to interest potential participants.
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:
- regular meetings to provide clinical support e.g. the opportunity to discuss clinical cases.
- supervision of clinical work.
- assessing clinical competence of newly trained staff.
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:
- patient information
- protocols for setting up clinics and any necessary approvals (which can be time consuming to obtain)
- honorary contracts (may be required for access to records and for clinical governance)
- training and education
- research governance and ethics approval, if required.
6.3 Consider the implications of different protocols and systems in different organisations
Clinical notes and medical record systems. Issues may include:
- staff unfamiliarity with other systems
- different data collection protocols
- different record keeping practices
- electronic record systems unable to communicate
- different activity coding.
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.
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):
- Inform relevant health professionals, especially those who will refer patients to the service e.g. GPs
- Training sessions may be required (for relevant health professionals to understand and use the service)
- Use a range of publicity methods
- Consider targeted mailings such as personalised emails or targeted letters.
Establish and use key contacts:
- Establish key contacts in all the relevant stakeholder groups and organisations (see section on stakeholder involvement)
- Key contacts can help identify useful dissemination opportunities and key individuals
- Key contacts in relevant health professional and patients groups can increase 'ownership' of a service development, especially if they agree to their involvement being publicised.
Draw on existing local meetings, networks of practitioners or websites to disseminate information:
- Check the schedule of meetings
- Find out the process for attending or raising an agenda item
- Target the information to the specific group
- Examples of useful groups and networks to contact to disseminate information include GP liaison committees, organisation practitioner email lists, practitioner networks, existing newsletters and websites, PCT education team and practice manager forums.
Have a recognisable service identity:
- Agree a name for the service and a logo (if appropriate, note NHS guidance) as early as possible
Develop standardised proformas and project information:
- Explain the aim of the project and its relevance succinctly; include any named contacts; may include the logo and those of any affiliated organisations
- Create standard proformas for gathering information, for example about training events
- Create standardised letters.
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:
- employing genetic link workers to work in a specific community
- using of bilingual information resources (written, visual, audio)
- using of the media e.g. Asian TV or radio shows, community newsletters
- working closely with influential members of the community
- distributing information materials or holding information stalls at community events.
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
- Does the target population have web access? For example, health professionals working in the community may not have web access.
- Is the use of web-based resources part of their normal routine?
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
- Ensure linked sites are relevant to the audience and reputable.
- Consider accessibility, security and usability issues.
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
- Identify training networks for relevant professional groups.
- Educational sessions provided within existing training programmes, networks or meeting are more likely to be attended than 'stand alone' events.
- Plan well in advance as educational programmes may be arranged a year ahead.
- Many health professionals may not be released from service for training other than mandatory training.
10.2 Match training to the learning needs and interests of the learners
- Assess participants' educational needs. Always speak to someone from the relevant group. It may also be possible to assess confidence, knowledge and current skills, for example, by using a survey or questionnaire.
- Regional genetics centre (RGCs) may be able to advise on target audiences.
- Demonstrate the relevance of genetics - health professionals with competing agendas may not prioritise genetics unless they can see the relevance to their practice.
10.3 Decide what topics and content to include
- Provide information on the service, its organisation, rationale and referral information.
- Consider asking potential participants, for example by using a survey.
- Work with speakers to identify relevant content and depth appropriate for the audience.
- Draw on the expertise of geneticists to identify speakers, decide which topics to cover and identify target audiences.
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:
- was the content relevant and appropriate
- did the session meet your learning needs
- did the session meet your expectations
- will the session increase your competence / improve your practice?
Consider pre- and post- outcomes measures to demonstrate effectiveness, for example, referral rates.
- Assess the impact of education on knowledge and clinical competence of healthcare professionals e.g. by interviews and questions, clinical observation or role play.
- Assess performance against recognised workforce competences e.g. the Genetics Competences.
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:
- avoid holidays
- consider speaker availability
- a minimum of six to eight weeks notice is needed for clinical staff to cancel clinics.
Consider the need to pay speakers an honorarium and cover travel expenses. Also consider:
- applying for CPD approval from relevant bodies - course content will be required in advance
- whether a delegate pack and handouts will be required
- how participants will register. If payment is required, how can it be made? Can cash payments be accepted?
- attendance may vary on the day - some people will be unable to attend and others may turn up without having registered.