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A Toolkit for Developing Services Involving Genetics

This information is for those who are developing services for patients with or at risk of genetic conditions. 

Please note that this Toolkit is based on the collected experiences of service development initiatives in genetics and 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.

 

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. Assess the need for the service
  2. Allow for a long lead-in time
  3. Draw on existing resources
  4. Investigate availability of clinic space and office space
  5. Plan an identified point of contact for queries
  6. Plan to assess the impact of the service

 

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.

 

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 3 - stakeholder involvement)
  • Promoting the project (see section 8 - 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.

 

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.

 

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?

 

5. Plan an identified point of contact for queries

  • Health professionals or patients will have questions about the service and need clear contact information.

 

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).

 

Examples of resources

  • The resources page provides examples of resources from previous service development initiatives.

 

 

Last updated: 13 October 2011

 

Genetics in Practice