Data Use Registers Standard - Improving transparency in the use of health data for research – emerging recommendations for a data use registers standard

We would like to invite you to contribute to developing recommendations for a data use register standard to improve transparency in the use of health data for research and innovation. We define a data use register as a public record of data an organisation has provided other approved individuals and organisations secure access to for the purpose of research, innovation and service evaluation.

The Green Paper outlining proposed recommendations has been developed following feedback from patient and public involvement panel members, data custodians, researchers and Alliance members, who provided their expert input through various workshops and interviews.

Your feedback will help us to further refine and define these recommendations on data use register standards.

Feedback will be consolidated into an updated paper that will be published on behalf of the UK Health Data Research Alliance.

If you have any questions or would like to contact us please email Paola.Quattroni@hdruk.ac.uk

Complete the questionnaire below:

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* 1. Please provide your name

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* 2. How would you describe yourself?

Member of the public

Researcher

Data Custodian

Funder

Policy Maker

Regulator

Other (please specify)

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* 3. Please provide your affiliation

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* 4. Please let us know if you’d like to be involved in this work

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* 5. Please provide your email address

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* 6. Recommendation 1: All data custodians and controllers responsible for the collection, storage and sharing of data for the purpose of research, innovation and service evaluation should publish a public record (data use register) of approved research studies, projects and other data uses.

Are you supportive of this recommendation?

Very supportive

Somewhat supportive

Neutral

Not supportive

Please provide comments

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* 7. Recommendation 2: Data use registers should, as far as possible, be populated in near real time directly from information provided through the Data Access Request process to improve timeliness and accuracy of entries.

Are you supportive of this recommendation?

Very supportive

Somewhat supportive

Neutral

Not supportive

Please comment

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* 8. Recommendation 3: Data use registers should be made available in both human readable and machine-readable formats.

Are you supportive of this recommendation?

Very supportive

Somewhat supportive

Neutral

Not supportive

Please comment

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* 9. Recommendation 4: Data use registers should have a consistency of format and content based on the Five Safes framework and an agreed specification to enable ease of understanding and aggregation of registers.

Are you supportive of this recommendation?

Very supportive

Somewhat supportive

Neutral

Not supportive

Please comment

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* 10. Recommendation 5: Researchers, data custodians and funders should use data use registers to close the loop on the impact of data use by including links to research findings and other outputs as these become available.

Are you supportive of this recommendation?

Very Supportive

Somewhat supportive

Neutral

Not supportive

Please comment

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* 11.  Feedback on specification:  Do you have any advice on the recommended content, format and frequency of updates to data use registers? Please refer to Table 1 in Green Paper or download the specification spreadsheet from GitHub.

Data Use Registers Standard - Improving transparency in the use of health data for research – emerging recommendations for a data use registers standard

Question Title

* 1. Please provide your name

Question Title

* 2. How would you describe yourself?

Question Title

* 3. Please provide your affiliation

Question Title

* 4. Please let us know if you’d like to be involved in this work

Question Title

* 5. Please provide your email address

Question Title

Question Title

* 7. Recommendation 2: Data use registers should, as far as possible, be populated in near real time directly from information provided through the Data Access Request process to improve timeliness and accuracy of entries. Are you supportive of this recommendation?

Question Title

* 8. Recommendation 3: Data use registers should be made available in both human readable and machine-readable formats. Are you supportive of this recommendation?

Question Title

* 9. Recommendation 4: Data use registers should have a consistency of format and content based on the Five Safes framework and an agreed specification to enable ease of understanding and aggregation of registers.Are you supportive of this recommendation?

Question Title

* 10. Recommendation 5: Researchers, data custodians and funders should use data use registers to close the loop on the impact of data use by including links to research findings and other outputs as these become available. Are you supportive of this recommendation?

Question Title

* 11. Feedback on specification: Do you have any advice on the recommended content, format and frequency of updates to data use registers? Please refer to Table 1 in Green Paper or download the specification spreadsheet from GitHub.

Question Title

* 12. Do you have any suggestions how to support adoption or address barriers to adoption? Any other comments?

* 7. Recommendation 2: Data use registers should, as far as possible, be populated in near real time directly from information provided through the Data Access Request process to improve timeliness and accuracy of entries.

Are you supportive of this recommendation?

* 8. Recommendation 3: Data use registers should be made available in both human readable and machine-readable formats.

Are you supportive of this recommendation?

* 9. Recommendation 4: Data use registers should have a consistency of format and content based on the Five Safes framework and an agreed specification to enable ease of understanding and aggregation of registers.

Are you supportive of this recommendation?

* 10. Recommendation 5: Researchers, data custodians and funders should use data use registers to close the loop on the impact of data use by including links to research findings and other outputs as these become available.

Are you supportive of this recommendation?

* 11.  Feedback on specification:  Do you have any advice on the recommended content, format and frequency of updates to data use registers? Please refer to Table 1 in Green Paper or download the specification spreadsheet from GitHub.