Table 4 Summary of key application milestones
Routine data source | Summary of key application milestones | Cost structure |
|---|---|---|
The Health and Social Care Information Centre (HSCIC) | August 2015: first request to review Participant Information Sheet (PIS) and Consent Form. Sent by enquiries desk to the Data Access Request Service (DARS) 4 November 2015: second request to review PIS and Consent Form. Sent by enquiries desk to Data Access and Information Sharing Team (DAIS) 23 November 2015: no feedback yet received. PIS and Consent Form discussed with a member of the DARS team in person at a HSCIC engagement event. Informed that a full, formal application would be required in order for HSCIC to provide feedback on the PIS and Consent Form. This was completed and submitted on 26 November 7 December 2015: response regarding PIS and Consent Form. Informative teleconference with a member of the DARS team 22 December 2015: response from the DAIS team in response to the second request on 4 November 2015. Teleconference provided feedback, in agreement with that received from the DARS team on 7 December 29 February 2016: as directed by HSCIC, submission of a new formal application using the existing application process 18 April 2016: formal acknowledgment of submission. Requested to submit the application via the DARS Online Portal 22 April 2016: formal application submitted via DARS Online Portal 24 May 2016: Data Access Advisory Group (DAAG) review. Caveats to be addressed before approval 26 May 2016: caveats addressed, application updated and re-submitted 13 July 2016: DAAG approved. Hospital Episode Statistics (HES) data available for download | Standard cost recovery structure applied: £1000 new application £900 release fee £500 3-year agreement £300 per dataset per year |
The Secure Anonymised Information Linkage Databank (SAIL) | 22 April 2015: first contact regarding application process and association with the Administrative Data Research Network (ADRN) June 2015: informative teleconference regarding the SAIL application process and scoping procedure 7 July 2015: protocol regarding methods specific to SAIL submitted August 2015: request to review PIS and Consent Form. Sent to information governance officer for review September 2015: feedback on PIS and Consent Form from information governance officer. Scoping document issued by SAIL January 2016: final review of PIS/Consent Form requested following revisions required for the other data sources February 2016: submission of full, formal application March 2016: feedback received following internal review with amendments suggested April 2016: application re-submitted for formal Information Governance Review Panel (IGRP) review, outcome pending | Standard cost recovery structure applied: £500 base cost £291 data transfer to SAIL £1455 individual-level data processing £500 data transfer |
The Clinical Practice Research Network (CPRD) | November 2014: first contact regarding feasibility of the study, response received broadly confirming feasibility August 2015: following protocol development, further contact regarding feasibility. Informed by CPRD that the Confidentiality Advisory Group and ethical approvals with HSCIC need to be updated to permit identifiable, linked data release and the timelines to resolve these are unclear. Furthermore, informed that compliance with HSCIC’s governance framework needs to be approved. No further contact as the issues with linked data release, cost and population coverage make CPRD not feasible for inclusion in this study | Standard cost recovery structure applied: £7500 CPRD GOLD for <1000 patients £4250 linked HES inpatient £850 linked HES outpatient £3000–5000 extraction, specification, assurance |
QResearch | ResearchOne The Health Improvement Network (THIN) Database | September 2015: all organisations contacted. Confirmed that data are de-identified only, with no facility to re-identify patients as would be needed for this study. Data sources are, therefore, not feasible for inclusion in this study | N/A |
North West eHealth | October 2015: first contact, the service is not routinely offered but feasibility of the process broadly confirmed November 2015: correspondence via email to request review of the protocol, PIS and Consent Form, confirm the methodology and determine provisional costings. Further discussion during a face-to-face meeting at NWEH December 2016: discussion with the third party, Apollo Medical Software Solutions, regarding the development of the data query to permit the extraction of data. Response received confirming the structure of the existing data query can be used for GP practices in Salford already holding a data-sharing agreement with NWEH, but a bespoke query would be required for this study January 2016: final review of PIS/Consent Form requested and received May 2016: < participants consented to inclusion in the study are registered in eligible GP practices; therefore, accessing data through NWEH is not feasible for this study | Bespoke NWEH costing: £11027 data handling £1575 data check £1326 project manager Apollo Medical costing: £7200 data query development CK Aspire costing: £6800 GP recruitment |
The Driver and Vehicle Licensing Agency (DVLA) | October 2014: multiple attempts at contact to discuss the feasibility of the study, including telephone calls and email correspondence. No response received February 2015: following discussion with a member of a DVLA expert committee, the DVLA medical advisor was contacted. The study was discussed with the DVLA data-sharing team and the response indicated that the DVLA would not have the capacity to assist with the study and the data-security requirements are ‘over and above the NHS or university’ | N/A |
The Department for Work and Pensions (DWP) HM Revenue and Customs (HMRC) | November 2014: first contact regarding feasibility of accessing DWP and HMRC data for this study. Request transferred to the DWP External Data Sharing and Advice Centre December 2014: External Data Sharing Advice Centre responded. Data access directly with the DWP or HMRC would not be possible and my request should be redirected to ADRN | N/A |
The Administrative Data Research Network (ADRN) | December 2014: first contact regarding feasibility for this study. No response received Feb 2015: further contact regarding feasibility of the study. General information provided via email March 2015: informative teleconference to discuss the study. ADRN confirmed that the study is eligible for their service and they can request access to the DWP/HMRC linked to clinical datasets, such as HES, provided by HSCIC. They agreed to contact the relevant data sources to determine the feasibility April 2015: further teleconference, no significant progress May 2015: further teleconference, HMRC have declined participation, the DWP remains pending. I am informed that if the DWP does not permit access to its data I cannot apply through ADRN solely for clinical datasets and independent applications must be submitted to the relevant organisations such as HSCIC July 2015: informed that the DWP have not been forthcoming but negotiations are on-going and they are unlikely to have a confirmed response until September. No further feedback received | N/A |