Consultation 2: Cystic Fibrosis (CF) Project   

Session Leads | Dr Rob Maddison (Wales Gene Park); Dr Andrew Fry (Wales Gene Park) – Observing 

For our main consultation of the day we welcomed Dr Rob Maddison who outlined the exciting work currently being undertaken around linking genetic, primary and secondary care data. You provided the following feedback on the project:  

Strengths  

• Data linkages –Good infrastructure to support this project in Wales through the SAIL databank 
• Data access – If data could be securely accessed beyond the lifetime of the patient concerned,  this would add value and maximise its use  
• Screening- Provide patients with option to find out if they are a CF carrier and identify impact of this on other aspects of  their healthcare.  
• Consent – Must be fully informed and ensure that patients/participants are made aware of their rights to opt out at any time.
• Displays in GP surgeries and CF out-patient clinics   
• Provision of easy-read options  
• Allowing sufficient time and consultation involvement opportunities   

Weaknesses   

• Data sharing – The public may not know, or understand fully, how their data is being shared or the process for opting out. 
• Data linkages –Disconnect between research and clinical environments. 

• Research –More accessible routes into the clinical trials required, acknowledging that the research is only as good as the research team involved. 
• Value for money- Key objectives/ clinical relevance of the project should be clear 

Opportunities  

• Data gathering/sampling-  This should reflect the diversity of the population  
• Public engagement- Use of existing networks to co-produce materials to raise awareness of the project, as well as the option to opt out  
• Further research- Such as people with other (non-CF) chest problems who may be carriers. CF carrier status tests could then be used to influence these future studies.  
• Bridging the gap – Between clinical and research arms of the service by providing cost-benefit analyses on money saved and improved patient experience , which leads to better economic decisions made based on sound, scientific and robust evidence.  

Threats   

• Data access –Risk attached if data is used beyond the project. This would impact on consent processes and ethical frameworks.  
• Data linkages – If data linkage opportunities realised this may impact success of the project   
• Scientific communication – Important to ensure that all public facing information is clear and easy to understand to encourage higher levels of participation in the project.  

• Consent – Ethics and trust need to be taken into consideration, specifically how the information is to be used. Lack of ‘opt-in’ option at the beginning of the process requires clear clarification of ‘opt-out’ process.