Exploring distribution of referrals to a Clinical Genetics Service v.1
Research type
Research Study
Full title
Measuring inequalities in the access to and utilisation of genetic and genomic services across the Collaboration for Leadership in Applied Health Research and Care North West Coast Region [CLAHRC NWC].
IRAS ID
213072
Contact name
Sikhanyisiwe Nhamburo
Contact email
Sponsor organisation
University of Central Lancashire
Duration of Study in the UK
0 years, 11 months, 31 days
Research summary
This application concerns the first phase of a doctoral research study examining what helps patients make use of genetic services and possible reasons for not using these services. It is funded by the Collaboration for Leadership in Applied Health Research and Care - North West Coast and undertaken in partnership with Liverpool Women’s NHS Foundation Trustl. Research evidence has shown that factors like ethnicity, gender and level of education can affect whether or not people attend genetic services. Our study will also examine if factors such as availability of transport or living in the countryside affect whether people attend.
New patients referred to the genetics service during the period 01 April 2013 to 31 March 2016 will be looked at in detail. Their information will be collected by the hospital Information Technology staff from the patient information system and will consist only of date of referral, gender, date of birth, patient category (e.g. ‘adult’), source of referral (e.g.GP or Hospital Specialist), postcode of referrer, patient ethnicity and full patient postcode.
To reduce the chance of identifying individual patients (e.g. by date of birth or postcode), one PhD supervisor will access the information at the hospital site. She will change the full postcode to a larger geographical area code which consists of 7,000 households. Also date of birth will be changed to age. Permission to access this data will be sought from an NHS ethics committee. Then the fully anonymised information will be transferred to the University secure server.
Geographical Information Mapping methodology, which creates visual maps of the North West Coast area will be used to explore if there are any relationships between, for example, availability of transport links and the pattern of referrals observed. These relationships will be discussed with service providers in Phase 2 of the PhD study.REC name
North West - Liverpool Central Research Ethics Committee
REC reference
16/NW/0801
Date of REC Opinion
28 Nov 2016
REC opinion
Favourable Opinion