Recontact in clinical practice: a survey of clinical genetics services in the UK
Turnpenny, Peter D.
Kelly, Susan E.
Genetics in Medicine
Nature Publishing Group for American College of Medical Genetics
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Purpose: To ascertain whether and how recontacting occurs in the UK. Method: A web-based survey was administered online between October 2014 and July 2015. A link to the survey was circulated via an email invitation to the clinical leads of the UK’s 23 clinical genetics services, with follow-up with senior clinical genetics staff. Results: The vast majority of UK services reported that they recontact patients and their family members. However, recontacting generally occurs in an ad hoc fashion when an unplanned event causes clinicians to review a file (a ‘trigger’). There are no standardised recontacting practices operating in the UK. More than half of the services were unsure whether formalised recontacting systems should be implemented. Some suggested greater patient involvement in the process of recontacting. Conclusion: This research suggests that a thorough evaluation of the efficacy and sustainability of potential recontacting systems within the national health service would be necessary before deciding whether and how to implement such a service or to create guidelines on ‘best practice’ models.
Economic and Social Research Council (ESRC)
This is the author accepted manuscript. The final version is available from Nature Publishing Group via the DOI in this record.
Published online 18 February 2016