Share your experiences of cardiomyopathy care

Project title: My Insight: the cardiomyopathy UK national survey
Lead researcher: Harriet Hay

Who are we?

Cardiomyopathy UK is the specialist national charity for people affected by cardiomyopathy. They work to ensure that everyone affected by the condition lives a long and fulfilling life. Picker is a leading international health and social care charity. We work to ensure everyone receives high-quality, person centred care.

What are we doing?

Picker, on behalf of Cardiomyopathy UK, is redeveloping a patient and carer survey. This will focus on the experience of UK adults (aged 16 and over) living with cardiomyopathy and/or their parents and carers. We want to understand experiences of diagnosis, treatment care and support, and any impacts of living with cardiomyopathy. The survey results will help improve services.

To support the development of the survey, we are conducting one-hour online interviews via audio or video call. We are carrying out the interviews during April, May and June 2024.

Who can take part?

We would like to speak to:

• people aged 16 and over living with cardiomyopathy in the UK
• parents and/or carers of those living with cardiomyopathy in the UK

What will happen if I take part in an interview?

We will schedule a convenient time to talk with you about your views and experience. You can provide your feedback by either a video call or by telephone. We will ask you which method you would prefer to use. If you take part, we will ask you to complete an online consent form before the call. This will include consent to audio record the interview.

The interview will last for about an hour. If at any time you do not want to answer a question, you do not have to. You are encouraged to discuss as much as you want but do not need to share anything that makes you uncomfortable.

You will be provided with a £25 Amazon or Love2Shop voucher after the interview to thank you for your time.

Do I have to take part?

No, participation in this research is entirely voluntary. It is up to you to decide whether to take part. If you decide to take part, you are still free to withdraw at any time and without giving a reason. This would not affect your legal rights.

What will happen to the information that I share?

We will use the information from your interview to help develop a survey about the experiences of people with cardiomyopathy. The interview content will be looked at by authorised persons from Picker who are organising and overseeing the research.

• Your views will be kept entirely confidential. No identifying information (such as names) will be shared with anyone who provides your care and treatment or anyone at Cardiomyopathy UK
• Nothing you say will affect your healthcare or rights to healthcare in any way.  
• Picker will use your personal data and responses solely for the purposes of this research. 

Picker complies with the UK General Data Protection Regulation (GDPR) and the Market Research Society’s (MRS) Code of Conduct by maintaining certifications from the International Standardisation of Organisations. Any sensitive or confidential material is stored securely in line with our data protection policy.

Your personal details (name and contact information) and the interview content will be kept until the survey development is complete. Then, they will be securely destroyed.

If you have any queries or require any further information, then please contact us by emailing take_part@pickereurope.ac.uk. Alternatively, please call our Freephone helpline on +44 (0) 800 1975273.

Ready to take part?

If you would like to take part, register your interest using the form in the link below: