Getting Involved in Research: Genetic Counselling Jill Clayton-Smith Central Manchester University...
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![Page 1: Getting Involved in Research: Genetic Counselling Jill Clayton-Smith Central Manchester University Hospitals Foundation Trust.](https://reader030.fdocuments.in/reader030/viewer/2022032802/56649dff5503460f94ae83f0/html5/thumbnails/1.jpg)
Getting Involved in Research: Genetic Counselling
Jill Clayton-Smith
Central Manchester University Hospitals Foundation Trust
![Page 2: Getting Involved in Research: Genetic Counselling Jill Clayton-Smith Central Manchester University Hospitals Foundation Trust.](https://reader030.fdocuments.in/reader030/viewer/2022032802/56649dff5503460f94ae83f0/html5/thumbnails/2.jpg)
Why do Research?
Doctor/Scientist
Find better treatments
Find out cause
Find out how to do things better
Requirement of job
Academic challenge
Prove a point
Path to fame and fortune
Patients
Find better treatments
Find out cause
Find ways of making life easier
Know what the future holds
Help others in same situation
![Page 3: Getting Involved in Research: Genetic Counselling Jill Clayton-Smith Central Manchester University Hospitals Foundation Trust.](https://reader030.fdocuments.in/reader030/viewer/2022032802/56649dff5503460f94ae83f0/html5/thumbnails/3.jpg)
Involving “Users” in Research
• Helps focus on topics which are of practical importance
• Enables design of participant friendly studies• Users may have useful research skills• Easier to disseminate findings to the people who
need to know them• Can be good for users’ self esteem
![Page 4: Getting Involved in Research: Genetic Counselling Jill Clayton-Smith Central Manchester University Hospitals Foundation Trust.](https://reader030.fdocuments.in/reader030/viewer/2022032802/56649dff5503460f94ae83f0/html5/thumbnails/4.jpg)
Why the recent emphasis on involving users in research?
• Now established as good practice
• A requirement of most funding bodies –
“Users should be involved at all stages of research from design to dissemination”
![Page 5: Getting Involved in Research: Genetic Counselling Jill Clayton-Smith Central Manchester University Hospitals Foundation Trust.](https://reader030.fdocuments.in/reader030/viewer/2022032802/56649dff5503460f94ae83f0/html5/thumbnails/5.jpg)
What Is Genetic Counselling?A two-way discussion where a doctor/genetic counsellorprovides information concerning:
• Diagnosis• Cause and natural history• Implications for management• Interpretation of laboratory tests• Risk assessment• Discussion of options• Support
The aim is to ensure optimum care for the patientand facilitate decision making in the future
![Page 6: Getting Involved in Research: Genetic Counselling Jill Clayton-Smith Central Manchester University Hospitals Foundation Trust.](https://reader030.fdocuments.in/reader030/viewer/2022032802/56649dff5503460f94ae83f0/html5/thumbnails/6.jpg)
What Else Does A Clinical Geneticist Do?
• Education
• Research
![Page 7: Getting Involved in Research: Genetic Counselling Jill Clayton-Smith Central Manchester University Hospitals Foundation Trust.](https://reader030.fdocuments.in/reader030/viewer/2022032802/56649dff5503460f94ae83f0/html5/thumbnails/7.jpg)
Exploring Views of Genetic Counselling For Cleft Lip and Palate Patients
• Prompted by our day to day clinical practice
• Recommendations say genetic referral should be offered to everyone but:
• Genetic counselling is more important for some patients than for others
• Yet another appointment to attend
• May provoke anxiety/guilt
![Page 8: Getting Involved in Research: Genetic Counselling Jill Clayton-Smith Central Manchester University Hospitals Foundation Trust.](https://reader030.fdocuments.in/reader030/viewer/2022032802/56649dff5503460f94ae83f0/html5/thumbnails/8.jpg)
Family 1 Family 2
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Can we make sure that the people who might benefit from or want a genetic appointment get one, yet avoid worrying or inconveniencing those where a genetic appointment is of lower importance?
![Page 10: Getting Involved in Research: Genetic Counselling Jill Clayton-Smith Central Manchester University Hospitals Foundation Trust.](https://reader030.fdocuments.in/reader030/viewer/2022032802/56649dff5503460f94ae83f0/html5/thumbnails/10.jpg)
Plan of Study
• Ask patients about their needs and preferences for genetic counselling
• Ask members of the cleft team what they think about their own needs eg for training and how genetic appointments can best be managed
• Ask Clinical Geneticists for their views• On the basis of the answers, design a genetic
counselling service for cleft patients that can be tailored to suit everyone’s requirements and preferences
![Page 11: Getting Involved in Research: Genetic Counselling Jill Clayton-Smith Central Manchester University Hospitals Foundation Trust.](https://reader030.fdocuments.in/reader030/viewer/2022032802/56649dff5503460f94ae83f0/html5/thumbnails/11.jpg)
How Are We Finding Out Users’ Views?
• Telephone interviews. Can be arranged to suit everyone and no travelling involved
• We phone you• 1-2 hrs allowed• Aim to cover different ages/cleft groups• Usually perceived as non-threatening• Ask permission to tape phone calls• Analyse everyone’s answers to look for common
themes
Qualitative Research
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How are we finding out cleft team/geneticists’ views?
• Focus groups
• 5-10 people
• Taped and analysed like the phone calls
![Page 13: Getting Involved in Research: Genetic Counselling Jill Clayton-Smith Central Manchester University Hospitals Foundation Trust.](https://reader030.fdocuments.in/reader030/viewer/2022032802/56649dff5503460f94ae83f0/html5/thumbnails/13.jpg)
Future plans
• This is a pilot study on which we will base a more substantial research project focussing on education and genetic service delivery
• Plan to involve users in design, writing of proposal and steering committee
• Keen for users to take on the role of presenting research findings at meetings
• Users included in authorship of any papers• Remuneration