FGs with patients with hearing loss
FG Q1. What are your thoughts on developing a registry of patients that have surgically implanted hearing devices?T1a. Improve quality and safety of careT1b. Help develop national guidelines and policyT1c. Facilitate patient decision-makingT1d. Challenges to registry development
FG Q2. How do you think patients could be involved in developing, leading or managing such a registry?T2a. Formal patient representation
FG Q3. What type of information do you think should be recorded in the registry?T3a. Registry dataset and easy-to-understand outcome measure
FG Q4. Would you want to be able to access and add information into the registry?T4a. Benefits of patient accessT4b. Patients entering data
FG Q5. How can we help get patients to input their data and be involved in the registry?T5a. Make the registry useful for patientsT5b. Make the registry simple and use technologyT5c. Inbuilt patient discussion forum
FG Q6. Would you like the registry to contain information on results of named surgeons or hospitals?T6a. Inaccurate reflection of practicesT6b. Increase patient choice
FG Q7. How do you think the data should be protected and kept confidential? Who should be allowed to access your data?T7a. Data governanceT7b. Data protection committee
FG Q8. Who should own the data of the registry?T8a. Independent organisation
FG Q9. Registries are expensive to set up and maintain. How should the registry be paid for?T9a. Multiple sources
FG Q10. Overall, what do you think is the most important factor for making a registry successful?T10a. Data completeness
  • FG, focus group; IT, information technology; PS, professional stakeholder; Q, questions; T, theme.