Cardiomyopathy UK MyInsight survey link and participant information sheet
Take part in the Cardiomyopathy UK MyInsight Survey
Thank you for taking the time to complete the survey using the above link. Your feedback is important and will help us address any poorer aspects of care and support, through our campaigning and wider work.
About the MyInsight survey
MyInsight is Cardiomyopathy UK’s national survey, for everyone affected by cardiomyopathy. It asks about experiences of diagnosis, care, support and the impacts of having, or caring for someone with, cardiomyopathy. The survey helps us understand what’s going well, and what is not, on a national scale. The results provide evidence needed to work towards improvements.
Do I have to take part?
No, this survey is voluntary. If you do not want to take part, please ignore any current or future survey invitations that you see or receive. If you choose not to complete the survey, you will not have to give us a reason and it will not affect your care in any way.
Who is carrying out the survey?
The survey is being carried out independently by Picker, a health and social care research charity, on behalf of Cardiomyopathy UK. This survey was part-funded by Bristol Myers Squibb and Cytokinetics. These companies had no input on the content or methodology and will not have access to data gathered.
Can a relative, friend or carer complete this questionnaire for me?
Yes, individuals who care for someone with cardiomyopathy are eligible to take part. This includes parents or carers of children with cardiomyopathy, along with those who care for adults with cardiomyopathy. Please carefully read the instructions within the survey which advise whether to answer giving the view of the person with cardiomyopathy, or the person who is caring for them.
How is my personal data protected? (this section is only relevant if you have received a direct email or postal survey invite)
Please note, we only hold personal data for those who are subscribed to Cardiomyopathy’s mailing list.
Your details were provided to Picker by Cardiomyopathy UK. Under data protection legislation, Cardiomyopathy UK is the controller responsible for the processing of your personal data to conduct the survey.
Your personal information will be handled securely in accordance with the General Data Protection Regulations. If you want more information about how Cardiomyopathy UK use your personal information to keep it safe, and what your rights are under the law, please read the Cardiomyopathy UK privacy notice.
Personal data about your involvement in this survey is not used for any other purpose and is securely deleted once the survey fieldwork is complete. You have the right to remove your personal data at any point during the survey fieldwork. Picker takes its information security responsibilities very seriously and applies various precautions to ensure your information is protected at all times from loss, theft or misuse. Stringent measures have been taken to ensure personal information is securely stored and only seen by the personnel directly involved in the survey.
How will the results from the survey be used?
Your answers will be combined with the answers of other people to understand people’s experiences of cardiomyopathy care and support and to show where improvements are needed.
The combined findings will not identify you and will be presented in a report that will be published by Cardiomyopathy UK in due course. Anonymised freetext comments may be used in the presentation results. Anonymised data will also be shared with the Association for Inherited Cardiac Conditions (https://www.theaicc.org/) committee and made available to clinical researchers by arrangement.
For questions or further information about the survey, please email research@cardiomyopathy.org.
Can I help share details of the survey with other people who may wish to take part?
Of course, we’d like as many people as possible to complete the survey. If you are not eligible to take part yourself but you know someone who is, please forward this email onto them. Alternatively, if you’re a healthcare professional, please help us promote the survey, by visiting the Cardiomyopathy UK website.