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RARE INSIGHTS

Improving UK genetic test reports

3/8/2017

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​The Winton Centre for Risk and Evidence Communication (
https://wintoncentre.maths.cam.ac.uk/) are working with representatives from the National Health Service, Association for Clinical Genomic Science, and the University of Cambridge to improve current genetic test reports.

Current genetic test reports are written for genetic experts to understand and then relay back to patients. We are working on creating a report that is friendlier to non-geneticists. This is so that patients and other general healthcare workers can be more involved with their medical decision-making.

We are recruiting participants to help us find out which reports, or features of reports, are good/bad so that together we can design a new one that is understandable by anyone who reads it. All that we require is your opinion and a small amount of your time.
 
Who we are looking for
  •   Participants aged 18 and over 
What we will do:
  • Focus group sessions, 1-to-1 interviews, or online surveys. (Your choice!)       Before any sessions there will be a short questionnaire to complete
  • Focus groups will involve an interactive session led by a researcher with 4 to 8 participants discussing and answering questions about features of reports (which will be provided during the session)
  • Interviews will be exactly the same but 1-to-1 (online) with a researcher
  • Online surveys will present a report and questions to be answered
 
When will we do it:
  • Focus groups will be held between 14th-16th and 29th-31st of August
  • Interviews will be held between 3rd-13th and 21st-28th of August
  • Evening times outside of working hours will be available
  • Online surveys will be sent out 5th-10th September
 
Where we will do it:
  • Focus groups will be held at the Centre for Mathematical Sciences (http://www.cms.cam.ac.uk/visiting/ free parking is provided)
  • Interviews will be conducted online via video call service (Skype, appear.in, Facetime) or phone call
  • Online surveys can be completed wherever you have an Internet connection
 
What do you get?
  • An opportunity to contribute towards national genetic test report design
  • £10 per hour for focus groups and interviews (sessions will last a maximum of 1.5 hours)
  • Travel expenses up to a maximum of £20 (receipts must be provided)
  • Survey participants are entered into a raffle for a £100 Amazon voucher
 
If you are interested in participating then please email Harry Gray (
hg384@cam.ac.uk) with your preference of focus group/interview/survey (if you have one) who will get in contact to arrange exact times/dates.
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