12. How will my information / answers be used?

The research will be conducted in accordance with the British Healthcare Business Intelligence Association (BHBIA), and the Market Research Society (MRS) codes of conduct and complies fully with Data Protection legislation.  This means that anyone who agrees to take part in the research will remain anonymous. No names or contact details will be shared with any third party. You do not have to answer any questions you don’t want to and you can withdraw from the research at any time.  Your individual responses will not be shared with DEBRA either.  All identifiable personal data will be deleted at the end of the study.  

The answers from both the survey and the interviews will be analysed by Synergy, who will then create an anonymised report, which they will share with DEBRA.  We will not see individual answers to either the survey or the interview.  We will use the anonymised report to shape all of our plans, and many of our campaigns, to try and address the key issues that arise from the report.  We’ll also share the anonymised reports with key stakeholders, like politicians. The results of this study may also be published in an academic article.

This study has now been completed, but we will repeat this study every 2 years to see the progress we’re making, and to address the changing needs of the EB community.