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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.

 

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.

  1. Identify key stakeholders
  2. Involve stakeholders in designing the service and materials

 

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.

 

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
  • Questionnaires
  • 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.

 

Examples of resources

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

 

 

Last updated: 13 October 2011

Genetics in Practice