Research and Evaluation

The SHAREHD programme ran a closed cohort group 24 month study alongside the Stepped Wedge Randomised control cluster trial of a breakthrough series collaborative.  Thank you for providing the final set of July 2018 data and filling the data gaps.  We are grateful to NHS Digital for supplying  wider cohort related data and are in the process of analysing all the data ready for reporting purposes.  The trial is in the process of being closed and we are expecting to publish results late summer 2019.

See below for the protocol, baseline results and questionnaires

Please be aware to comply with the new GDPR obligations in addition to the Patient Information Sheet issued to all participants that can be found below the following detail and websites should be drawn to your attention:

1. The name and contact details of the lead evaluation organisation ScHARR, The University of Sheffield, Regent Court, 30 Regent St, Sheffield. S1 4DA

2. The name and contact details of our representative Dr. Steve Ariss, University Research Lead for SHAREHD, ScHARR, This email address is being protected from spambots. You need JavaScript enabled to view it.

3. The contact details of the Sheffield University data protection officer Anne Cutler, Data Protection Officer, The University of Sheffield, Western Bank, Sheffield S10

4. The purposes of the processing. Undertaking research

5. The lawful basis for the processing. The processing of data for research: • Article 6(1)e: ‘…necessary for the performance of a task carried out in the public interest or in the exercise of official authority…’. • Article 9 (2) j ‘…processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject…’.

6. The legitimate interests for the processing (if applicable). Not applicable

7. The categories of personal data obtained (if the personal data is not obtained from the individual it relates to). Personal and special category data:
- HES Accident and Emergency
            Attendance
            Clinical diagnosis
            Clinical treatments
            Clinical investigations
            General fields
            Geography
            Patient data
            Health care
            Resource group
            System data
            Organisation
           
- HES Admitted Patient Care
            Admissions period of care
            Augment critical care period
            Clinical
            Clinical period of care
            Discharges period of care
            Episodes and spells period of care
            General fields
            Healthcare resource group
            Organisation
            Patient data
            Socioeconomic


8. The recipients or categories of recipients of the personal data. The sponsor is Sheffield Teaching Hospitals NHS Foundation Trust. The recipients of the study data are health services researchers at The University of Sheffield, particularly in the field of health economics and medical statistics. Key research leads are:
 

• Dr Tracey Young (ShareHD Trial Health Economist)
• Prof Stephen Walters (ShareHD Trial Statistician)
• Dr Steven Ariss (ShareHD Chief Evaluator)
• Dr James Fotheringham (ShareHD Co-investigator and evaluator)

9. The details of transfers of the personal data to any third countries or international organisations (if applicable). Not applicable

10. The retention periods for the personal data.
Personal data collected during the study will be stored in archive for five years. Any linked NHS Digital for Hospital Episode Data will be retained for 5 years.

11. The rights available to individuals in respect of the processing.
As stated by the Information Commissioner’s Office you have the following rights:

• The right to be informed
• The right of access
• The right to rectification
• The right to erasure
• The right to restrict processing
• The right to data portability
• The right to object

You are entitled to a copy of all the information the University holds about you, although you may not be able to receive information which identifies or relates to anybody else. If you would like a copy of your records, please contact the University Data Protection Officer. In order to help us provide you with the information as quickly as possible, it would be very helpful if you could provide us with as much information as possible, particularly if you can specify which sort of information you are interested in. You will be required to provide proof of identity, such as a photograph and a signature.

Rights in relation to automated decision making and profiling - This is Not Applicable as no automated decision making or profiling has been undertaken.

12. The right to withdraw consent (if applicable). You have the right to stop any processing which is based solely on your consent. Please contact the University Data Protection Officer

13. The right to lodge a complaint with a supervisory authority. If you feel that the University has not dealt correctly with your personal data you can complain to the Information Commissioner’s Office.

14. The source of the personal data (if the personal data is not obtained from the individual it relates to). The source of the data is primarily from the individual plus NHS Digital for Hospital Episode Data. The personal data provided by the individual is required to link the two sources.

15. The details of whether individuals are under a statutory or contractual obligation to provide the personal data (if applicable, and if the personal data is collected from the individual it relates to). Not applicable

16. The details of the existence of automated decision-making, including profiling (if applicable). Not applicable

 

• The Sheffield University GDPR Privacy Notice can be found here https://www.sheffield.ac.uk/govern/data-protection/privacy/general
• The Sheffield Teaching Hospitals GDPR webpage and Privacy Notice can be found below. http://nww.sth.nhs.uk/NHS/InformationGovernance/GDPR%20Processing%20Personal%20Data.html

Thankyou for your support and involvement in this study.

Please download these files and where noted include your local Trust header and information. Please also review the timetable before for the correct use of these resources.