Ten ways to give patients confidence in how their data is shared

10 principles on information sharing

1. People can access their own health and social care data and records to see what the system has collected and who they are sharing it with.
2. Data is collected and shared in a manner that does not unjustifiably compromise people’s anonymity, safety or treatment.
3. Collecting and sharing data cannot be used to justify treating people on an unequal basis with others.
4. Data collection and sharing will not have impact on a person’s wellbeing by, for example, causing them additional anxiety or distress.
5. People are provided with all the information they require about Care.data or any other data sharing initiative, to make an informed choice about whether they want to opt in or out.
6. Frontline professionals are upfront and honest about the benefits and dis-benefits of opting in or out of Care.data or any other similar programme.
7. If an opt out is offered, it must be a genuine option (i.e. not overly burdensome) and people must be informed about the restrictions and limitations of this option.
8. If someone raises a concern or makes a complaint about the collection or sharing of their records, this must be taken seriously and staff must take immediate action to address the concern and, if it relates to a breach of confidentiality, put safeguards in place to restore the person’s anonymity.
9. People should be able to opt out  later if they change their mind about the programme in future.
10. People should be offered an opportunity to get involved in local decisions at their GP surgeries about whether or not records are shared with the Care.data programme.