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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.

 

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.

  1. Comply with national requirements
  2. Comply with local policies and guidelines
  3. Consider the implications of different protocols and systems in different organisations

 

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.

 

2. Comply with local policies and guidelines

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

  • patient information
  • websites
  • 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.

 

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?

 

Examples of resources

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

 

 

Last updated: 13 October 2011

Genetics in Practice