From May 2016 all patients in the Registry will need to be consented; there are four separate consent questions and our experience so far suggests patients tend to consent to all.
- Informed consent for Registry. This allows personal demographic and clinical data to be sent to the IBD Registry. If patients say NO to this then the subsequent questions are not applicable.
- Informed consent for linkage. This allows HSCIC to use NHS numbers to extract and link to past Hospital Episode Statistics and then repeat the extraction each year as new HES data is published. It also allows other linkages such as cross-border activity with Wales and Scotland, accessing the mortality register held by Office of National Statistics and potentially other national audits such as bowel cancer.
- Informed consent for research. This allows data to be used by researchers who have received Registry approval to access the Registry data.
- Informed consent to be contacted for future research studies. This allows data to be matched against criteria for research projects (e.g. a study into side effects from a particular type of treatment). If a patient seems eligible, HSCIC will contact their local clinical team.
There’s more information on consent at http://ibdregistry.org.uk/resources/consent-materials/and http://ibdregistry.org.uk/information-for-patients/