Delivering independent intelligence for health and wellbeing National Drug (and Alcohol) Treatment Monitoring System Jill Smith Public Health Liaison Manager North East Public Health Observatory NDTMS ~ Consent

Delivering independent intelligence for health and wellbeing Protecting Confidentiality – What do we know? Information in submitted file is deemed to be patient-identifiable as it is not fully anonymous, however:- Full names are reduced to initials Postcodes truncated in national dataset (NB: NE regional dataset holds full postcodes if provided but are not available to national dataset. This allows for geographical analysis within region)

Delivering independent intelligence for health and wellbeing Protecting Confidentiality – Consent to Share Client is informed what data NDTMS shares, with whom/why and what safeguards are in place Client gives explicit informed consent to share their data with NDTMS orally or (ideally) in writing. If a client refuses consent, the extract will contain the record but without information YP may or may not be competent to give consent. This is for the clinician to determine, and if appropriate seek parental/guardian consent. Record in casefile.

Delivering independent intelligence for health and wellbeing NDTMS – Confidentiality & Consent Various documents supporting YP services All services should have clear policies a)Confidentiality and information sharing Agreed by Local Safeguarding Children’s Boards b)Consent to treatment, and c)Child protection

Delivering independent intelligence for health and wellbeing Protecting Confidentiality – Consent to Share If a client has previously given consent but then asks to withdraw consent:- The current, open episode can be changed to reflect this Future monthly submissions will not contain the data Archived/Backup data files may still contain the data If a client has previously refused consent but then agrees:- The current, open episode can be changed to reflect this Future monthly submissions will contain all the data Archived/Backup data files will not contain the data

Delivering independent intelligence for health and wellbeing Protecting Confidentiality – Data Transmission If a client has refused consent NDTMS will not know anything about the client Drug/Alcohol? Young Person/Adult? New Presentation/Previously Treated/Duplicate Client? Interventions? Waiting Times? Outcomes? Such clients will not count towards any indicators

Delivering independent intelligence for health and wellbeing Protecting Confidentiality – Data Transmission Transmission Methods: Provider to DAMS: secure web-based system Provider to NDTMS team: secure, drop-box with agency- level, encrypted data NDTMS team to Provider: secure, drop-box with agency- level, encrypted data NEVER BY CD OR PHYSICAL MEDIA OR UNENCRYPTED

Delivering independent intelligence for health and wellbeing Protecting Confidentiality – Confidentiality Toolkit Toolkit available to assist Service Managers, Keyworkers and Clients in understanding NDTMS and consent: Confidentiality Toolkit August 2009 NEPHO.pdf