Thank you for taking part in our national survey
MyInsight, the 2024 Cardiomyopathy UK national survey, is now closed. A huge thank you to everyone that completed it. This is the best response we've had so far.
The results will help us target our campaigning work and services to the issues that matter most to you.
Your voice matters
Our 2022 survey gave us evidence to present to the UK medical regulators in support of the first cardiomyopathy-specific drugs - Mavacamten and Tafamidis. It also helped us advocate for improved mental health provision on the NHS and build on our existing services.
You’ll find a summary of the 2022 findings here. Or you can read the full State of Cardiomyopathy Care report here.
This year we’re working with Picker, an experienced health and social care research organisation who regularly carry out surveys for the NHS and other charities. When developing the survey they interviewed people with a range of experiences of cardiomyopathy to ensure we’re asking the right questions. They will also be helping us to interpret and share the results.
Healthcare professionals
Thank you to all those that helped promote the survey. We are expecting to publish the report early in 2025. This PDF copy of the survey (for information only) contains all the questions included in the online version of the survey. To find out more please email us at research@cardiomyopathy.org or call 01494 791224 (during office hours).
FAQs
The survey asks about experiences of living with or caring for someone who has cardiomyopathy. We would like to understand experiences of diagnosis, care, support, and the impacts of living with the condition. The survey results will help us campaign for improvements in services and support.
The survey is being carried out independently by Picker, a health and social care research charity, on behalf of Cardiomyopathy UK.
The survey was for adults aged 16 or over who have or care for someone with a cardiomyopathy diagnosis in the UK. If you’re under 16 please ask a parent or carer to respond from their perspective.
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.
The survey will be open from Tuesday 23 July until Tuesday 17 September 2024.
Those that are signed up to our newsletter received a link to the survey be email. Those that have signed up to receive post received a paper copy with a pre-paid envelope. Our partners at Picker sent out the surveys on our behalf. The survey was promoted through Cardiomyopathy UK social media channels, at Cardiomyopathy UK support groups and in by health care professionals.
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 in due course. Anonymised text comments may be used in the presentation of results. Anonymised data will also be shared with the Association for Inherited Cardiac Conditions committee and made available to clinical researchers by arrangement.
Your personal information will be handled securely in accordance with the General Data Protection Regulations (GDPR). If you would like more information about how we use your personal information, keep it safe, and what your rights are under the law, please see our privacy policy.
Personal data about your involvement in this survey is not used for any other purpose and is securely deleted once the survey process is complete. You have the right to remove your personal data at any point during the survey process. Our survey partners at Picker take their information security responsibilities very seriously and apply 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.
If you have any further questions about the survey, please email research@cardiomyopathy.org or call us on 01494 791224.
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.