Take part in our national survey
MyInsight, the 2024 Cardiomyopathy UK national survey, is open now. We need your help to get the best response possible. The results will help us target our campaigning work and services to the issues that matter most to you.
Whether you have cardiomyopathy yourself, or care for somebody who does, we want to hear from 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
The survey is for adults aged 16 or over who have or care for someone with a cardiomyopathy diagnosis in the UK. If you’re a healthcare professional, please help us reach as many people as possible by promoting the survey. Email us at research@cardiomyopathy.org or call 01494 791224 (during office hours) to request resources. This PDF copy of the survey (for information only) contains all the questions included in the online version.
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 is 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 18 September 2024.
If you’re signed up to our newsletter, you will receive a link to the survey by email. If you’re signed up to receive post, you will receive a paper copy with a pre-paid return envelope. Our partners at Picker will be sending out the surveys on our behalf, so please make sure to look out for the email/posted copy. You can also click this link, request a paper copy (see below) or call us on 01494 791224 (during office hours) to complete the survey over the phone.
The survey consists of up to 44 (mainly) multiple-choice questions and should take around 10-15 minutes to complete.
Yes, people 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.
Yes, please send an email with your name and postal address to research@cardiomyopathy.org or call 01494 791224 (during office hours). We will post a paper copy of the survey to you with a pre-paid envelope for its return.
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 share the link/ postal paper copy with them.
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.