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Open Access Research article

A toolkit for incorporating genetics into mainstream medical services: Learning from service development pilots in England

Catherine L Bennett1*, Sarah E Burke2, Hilary Burton3 and Peter A Farndon1

Author Affiliations

1 NHS National Genetics Education and Development Centre, Birmingham Women's NHS Foundation Trust, Edgbaston, Birmingham, B15 2TG, UK

2 School of Education, University of Birmingham, Edgbaston, Birmingham, B15 2TT, UK

3 PHG Foundation, Strangeways Research Laboratory, Worts Causeway, Cambridge, CB1 8RN, UK

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BMC Health Services Research 2010, 10:125  doi:10.1186/1472-6963-10-125

Published: 14 May 2010

Abstract

Background

As advances in genetics are becoming increasingly relevant to mainstream healthcare, a major challenge is to ensure that these are integrated appropriately into mainstream medical services. In 2003, the Department of Health for England announced the availability of start-up funding for ten 'Mainstreaming Genetics' pilot services to develop models to achieve this.

Methods

Multiple methods were used to explore the pilots' experiences of incorporating genetics which might inform the development of new services in the future. A workshop with project staff, an email questionnaire, interviews and a thematic analysis of pilot final reports were carried out.

Results

Seven themes relating to the integration of genetics into mainstream medical services were identified: planning services to incorporate genetics; the involvement of genetics departments; the establishment of roles incorporating genetic activities; identifying and involving stakeholders; the challenges of working across specialty boundaries; working with multiple healthcare organisations; and the importance of cultural awareness of genetic conditions.

Pilots found that the planning phase often included the need to raise awareness of genetic conditions and services and that early consideration of organisational issues such as clinic location was essential. The formal involvement of genetics departments was crucial to success; benefits included provision of clinical and educational support for staff in new roles. Recruitment and retention for new roles outside usual career pathways sometimes proved difficult. Differences in specialties' working practices and working with multiple healthcare organisations also brought challenges such as the 'genetic approach' of working with families, incompatible record systems and different approaches to health professionals' autonomous practice.

'Practice points' have been collated into a Toolkit which includes resources from the pilots, including job descriptions and clinical tools. These can be customised for reuse by other services.

Conclusions

Healthcare services need to translate advances in genetics into benefits for patients. Consideration of the issues presented here when incorporating genetics into mainstream medical services will help ensure that new service developments build on the body of experience gained by the pilots, to provide high quality services for patients with or at risk of genetic conditions.