Patient declining consent
SSNAP has approval under Section 251 to collect patient-level data on the first six months of patient care. The rationale for this legal basis is that many stroke patients are extremely unwell in the acute phase of their treatment and it is not feasible to rely on patient consent during this time period.
Patient consent is explicitly sought at six months post-stroke, though it can be recorded during the patient's inpatient stay. Where a patient refuses consent for inclusion in SSNAP, all their personal identifiable information will be wiped from the dataset.
If a patient refuses consent, non-identifiable data will continue to be held on the database as it is important for the purpose of SSNAP to analyse all data without selection bias.
Patient refuses before data input
If the patient refuses consent before their record has been started, do not start a SSNAP record for the patient. Starting a record will include adding patient-identifiable information.
Patient refuses after data input
If the patient refuses consent and their data has already been added to SSNAP, please answer 3.9 or 7.14 (inpatient dataset) or 3.10 (community dataset) with 'No, patient refused consent'. All patient identifiable information will be wiped from the SSNAP webtool.
Patient refuses during six-month assessment
If the patient refuses consent at the six month assessment stage, please select 'No, patient refused consent' for 8.1.5. All patient identifiable information will be wiped from the SSNAP webtool.
Please note: In Northern Ireland, no patient identifiable information is collected via the electronic SSNAP webtool.
1. Do teams in Northern Ireland need to answer consent questions?
Teams in Northern Ireland do not have to ask for consent as no patient identifiable data is submitted to SSNAP. These teams can say "patient not asked" by default to any consent questions.
2. What happens to patients who are too unwell to give consent within the 72 hours?
SSNAP currently has approval under Section 251 to collect confidential information up to six months after a patient has had a stroke, and so it is not a requirement that the patient is asked for consent at this stage. If the patient was not asked for consent or they could not give consent, please record "Patient not asked".
3. If the patient does not consent to share patient identifiable information, how is the record transferred to community providers?
You can still transfer the record on SSNAP and contact the community team to let them know that this patient does not have identifiable information. The patient will still have a unique SSNAP ID that can be used to search the patient on the SSNAP webtool.
4. How do you anonymise the patient identifiable data on SSNAP?
Once "No, patient refused consent" is chosen for a consent question, the webtool will remove all patient identifiable information. The team does not need to do anything else. This includes: name, NHS number, hospital number, date of birth and postcode. The patient will still have a unique SSNAP ID that can be used to search the patient on the SSNAP webtool.
5. Are there patient information leaflets available to download and give to patients when discussing consent?
Patient information sheets are available here: Information sheets