1. A brief to the Patients

2. What is consent? Dictionary definition is “verb: to agree to, noun; permission, agreement.” But what does that mean in medical terms? Two types of consent: Consent for clinical procedure or intervention. Consent to share information. But both must be: Informed (moral and legal responsibility to tell patient) Voluntary With Capacity Documented

3. Consent for a clinical procedure Patient gives consent for a clinician to proceed with a clinical intervention or procedure. This type of consent may take the form of: Implied consent (e.g. flu vaccination when a patient roles up their sleeve). Explicit consent: Verbal agreement to proceed with a procedure. Written agreement on the day (minor procedures) Written agreement in advance (major procedures)

4. Consent to share information Should also be informed. Typically one patient giving permission for his /her records to be shared with, for example: A carer. An employer (or Occupational Health) via a medical report. A Police Officer (can also be non-consented in serious cases). A complainant who is complaining on behalf of the patient. Another health care professional (implied or explicit) This should be time-bound (i.e. for “period of care”). Over rides patient confidentiality for that time frame. Information can be redacted (removed) at patient request.

5. New NHS initiatives All of the following will include some data sharing agreement: Summary Care Record Enhanced Data Sharing Model (eDSM) Risk Profiling Toolkit

6. New NHS initiatives Summary Care Record Introduced in 2010 by an “opt out” scheme. Enables Health Care Professional in England to view: Demographic data. Current medications. Known allergies and allergic reactions. Known sensitivities. Ensures quicker, more accurate diagnosis and treatment. Clinician will ask consent before viewing where possible.

7. New NHS initiatives Enhanced Data Sharing Model (eDSM) eDSM is the new SystmOne sharing mechanism in which the patient is asked whether they would like to make their clinical information Shareable out or allow a Share in at each care service. This will be asked at each point of care by the relevant clinician. From Caldicott Review of April 2013. Examples on next slides:

8. How does eDSM work? The care service must have recorded patient consent to share information recorded at that care service (i.e. to Share Out in to the pool) The viewing service must have also recorded positive consent to view information from other services (i.e. to Share In from the pool). The patient must consent to both the share out and the share in for the service to see the information. If an individual event is marked as private it will not be part of the pooled record All Shared Out information will go into the ‘pooled SystmOne record’ All Shared In information will be viewed from the ‘pooled SystmOne record’

9. eDSM – Shared Pool Example GP Practice Community Diabetes Clinic Smoking Cessation Service In this case the patient has agreed to share out from the GP and share in at the diabetes clinic so the diabetes nurse can see what the GP has written about the patient. Likewise as there is a share out at the Clinic AND a share in at the GP he can see what the clinic nurse has written about the patient. This will provide better diabetes care. However in this case the patient has only agreed to share out information from the smoking service but NOT to share in. This means that both the GP and the Nurse can see information from The smoking service, but this service cannot see any information from them.

10. New NHS initiatives Risk Profiling Toolkit A brand new West Yorkshire initiative. Toolkit has information only from the hospital (recent attendances and appointments) and from the GP. The GP can interrogate the toolkit to predict risk of admission or readmission to hospital with a particular set of patients (e.g. age related, disease related etc). This will help keep patients out of hospital by better and more timely care and intervention Consent via “opt out” – i.e. you have to tell us if you don’t want your name included in the search.