Summary  4

Research opportunities for national health data  4

What are the technical challenges?  5

What are the governance considerations?  5

Trust and participation  5

Acknowledgements  5

1 Background  6

1.1 Policy context in England  7

1.2 What examples of national health data initiatives exist nationally and internationally?  9

2 Opportunities for national health data  13

2.1 Prevention  13

2.2 Diagnostics  14

2.3 Treatment  14

2.4 Clinical trials  14

2.5 Drug safety and long-term efficacy  15

3 What are the technical considerations for accessing national health data?  16

3.1 Data quality  16

3.2 Representative data and health inequalities  17

3.3 Data interoperability and standardisation  18

3.4 Data security  19

3.5 Linking datasets together  20

3.6 Third-party software providers  21

4 What are the legal and governance considerations for accessing health data?  22

4.1 Existing legislation  22

4.2 Can patients opt-out of their data being used?  23

5 Trust and participation  27

5.1 Public attitudes to health data sharing  27

5.2 What contributes to public trust?  28

5.3 Trust and participation from general practitioners  29

6 Policy considerations for the Health Data Research Service  30

References  32

Contributors  41