Use of Real World Health Data for Research

potential outcomes of interest from real world data

• survival outcomes

• length of hospital stay

• procedures

• prescriptions administered

limitations of real world data

• real world

• singe centre

• patient numbers

• missing data

7 principles of GDPR

• lawfulness, fairness and transparency

• purpose limitation

• data minimisation

• accuracy

• storage limitation

• integrity and confidentiality

• accountability

FAIR data principles

• Findable

• Accessible

• Interoperable

• Reusable

national data opt out

all patients have right to opt out of their data being used for secondary use

caldicott guardians in the NHS

1. justify purpose for using confidential info

2. use confidential info only when necessary

3. use minimum necessary confidential info

4. access to confidential info should be on a need to know basis

5. everyone with access to confidential info should be aware of their responsibilities

6. comply with the law

7. duty to shar info for individual care is as important as duty to protect patient confidentiality

8. inform patients and service users about how their confidential info is used

data deidentification

• degrees of identifiability

  • direct identifiers- name, address, postcode, NHS number, DoB

  • indirect idnetifiers- age in years, other dates

• pseudonymous data

• de-identified data

• anonymous data

motivated intruder test

• a person who starts without any prior knowledge but wished to identify an individual from whose personal data the anonymous info is derived

• assess whether motivated intruder is likely to be successful

good practice when accessing data

• do not share passwords

• lock your screen

• do not send identifiable data via or to non NHS email

• do not search patient notes you are not involved in the care of

• be aware of small numbers