What are your views on using patients’ health data to try to improve services?

The Children’s Heart Federation is involved in a new research project called CHAMPION to try to improve how the quality of services for congenital heart disease (CHD) is measured and reported in England.

Many research projects collect new data and, as part of that, patients are explicitly asked to consent to that new data being used for research. However, patients are not given the chance to consent to hospital data that is routinely collected as part of their care being used for research. Because of that, using such “unconsented” data requires that researchers get special permission from the health research authority, who check that they are able to process confidential patient information and that they are using that information appropriately.

The CHAMPION study will use this kind of routinely collected data, but the data we’ll have won’t include any patient’s name, address, date of birth or postcode. As part of our approval to use the data, we have been asked to obtain the views of patients and their families on using routinely collected hospital data (that patients don’t explicitly consent to), for research aimed at improving services. We’d be really grateful for any thoughts you have.

Thanks very much for your help!

Please email info@chfed.org.uk for the survey questions.

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