Service Evaluation – Frequently Asked Questions (FAQ’s)
We are extremely passionate about the work we do as a charitable organisation and regard this project as having immense potential to enhance the effectiveness of our nationwide cardiac screening programme. In doing so, we hope to increase the number of heart checks performed as well as identify and facilitate the management of individuals with undiagnosed heart problems. Early detection enables early medical interventions that can modify the natural course of the disease process and, importantly, minimise the risk of young sudden cardiac death.
The research team at Cardiac Risk in the Young (CRY) have put together this FAQ document to address any questions you may have. We hope you find the answers provided helpful and would like to thank you for engaging in this vital audit. Should you have any further queries, please do not hesitate to contact our team on 01737 363222 or followup@c-r-y.org.uk
The survey that you received is part of a Cardiac Risk in the Young (CRY) service audit, the aim of which is to further our understanding and improve our screening programme. We would like to reassure you that it is not spam. We are most grateful to all individuals who have been screened by CRY who dedicate some of their time to answer our brief survey regarding their cardiac health since attending a CRY screening event. We would like to take this opportunity to reassure you that your personal information will be anonymised and kept confidential at all times. No individual’s personal information will be published in an identifiable manner.
We appreciate your concern but would like to reassure you that if you have been contacted by Cardiac Risk in the Young (CRY), this is in light of a previously attended screening event held between January 2008 and December 2017. This would have been part of a general population screening event or an elite sports screening event. We are fully aware that sometimes individuals are booked onto our screening events by parents, relatives, loved ones or – in the case of sports screenings – club doctors. As part of this process, and in agreement with your signed consent from the day of the screening event, your personal information, including email address, has been stored on our secure bookings system. This might be a parent’s email address and/or your personal email address. However, if you believe that you have received this survey in error, we would be extremely grateful if you contact our team on 01737 363222 or followup@c-r-y.org.uk so that we can determine how this happened.
Our ongoing service evaluation is aimed at individuals screened between January 2008 and December 2017. If you were screened by CRY inside this time period but did not receive an email containing the link for the survey, then please contact our team on 01737 363222 or followup@c-r-y.org.uk.
Yes, this is still highly relevant to you. Cardiac screening is an evolving field, and along with healthcare policy makers, we are very keen to understand the long-term efficacy of our current screening model. This can only be reliably undertaken by looking back across quite a long period of time (2008 to 2017) and directly engaging with individuals such as yourself – which we have attempted to do through our survey.
Yes, please complete the survey. Cardiac screening is an evolving field, and along with healthcare policy makers, we are very keen to understand the long-term efficacy of our current screening model. This can only be reliably undertaken by looking back across quite a long period of time (2008 to 2017) and directly engaging with individuals such as yourself – which we have attempted to do through our survey.
No, we would like to reassure you that we have not identified a problem. The survey that you received is part of a Cardiac Risk in the Young (CRY) service audit, the aim of which is to further our understanding and improve our screening programme. This survey has been sent out to all individuals who have previously been screened by CRY between January 2008 and December 2017 and is therefore not related or tailored to any specific outcomes from your screening day.
Information from your original cardiac screening tests (health questionnaire responses and ECG findings) has been stored by CRY in an anonymised form using the same Unique ID number which we provided to you in your survey email. This unique ID number will enable us to link your anonymised responses to this survey, to your existing anonymised screening outcomes data. Storage and analysis of this data will be undertaken in a secure environment on servers overseen by CRY. At absolutely no point, will CRY re-identify your data; and nor will any individual’s personal information be published in an identifiable manner.
Both CRY, and the company that provides the secure servers used by CRY, are ISO 27001 certified (an internationally recognised standard for Information Security).
If you have any further queries about this, please do not hesitate to contact our team on 01737 363222 or followup@c-r-y.org.uk
We always openly welcome engagement with our research. Our team can be contacted at followup@c-r-y.org.uk and we look forward to receiving any comments / feedback or arranging a mutually convenient time to discuss things further. We are most grateful to all individuals who have been screened by CRY for dedicating some of their time to answering our brief survey regarding their cardiac health since attending a CRY screening event.
