PANORAMA Data Security & Access Protocol

Transcription

1 PANORAMA Data Security & Access Protocol ALL DATA Security Any data provided to the PANORAMA Data Management Facility by external data guardians will be stored securely on the Flinders Medical Centre Y drive network. Access to the data will be restricted to the PANORAMA Data Manager (currently Mr John Gray), and the PANORAMA Data Project Assistant (currently Ms Astrid Tiller), via secure user name and password. As an agency of SA Health, Flinders Medical Centre will comply with all South Australian Government policies and directives for data security 1. A separate emergency back-up copy of all data will be stored securely in a separate location at Flinders University of South Australia (Flinders Centre for Epidemiology and Biostatistics). Authorised Access Access to data will be in accordance with all conditions provided by the original data guardian as well as complying with all South Australian Government policies and directives for data security. A record of all data access events will be maintained by the PANORAMA Data Manager via a spreadsheet stored securely on the Y drive network at Flinders Medical Centre. Eat Well Be Active (EWBA) Communities data Security The copy of the EWBA Communities Program data provided to the PANORAMA Data Management Facility is stored securely on the Flinders Medical Centre Y drive network. Access to the data is restricted to the PANORAMA Data Manager (currently Mr John Gray) and the PANORAMA Data Project Assistant (currently Ms Astrid Tiller) via secure user name and password. As an agency of SA Health, Flinders Medical Centre will comply with all SA Government policies and directives for data security 2. A separate emergency back-up copy of the EWBA Communities Program data is stored securely in a separate location at Flinders University of South Australia (Flinders Centre for Epidemiology and Biostatistics). 1 See a) Southern Adelaide Health Information & Communication Technology Foundation policy b) SA Health Directive on ICT Security Policy MOD=AJPERES&CACHEID=80338b e9dad53c49818 and c) Items 10 & 11 in SA Health s Guideline CS/08/03/0049 Data Management Protocols for Data Custodians 2 ibid

2 Request for data The authorisation process for access by other parties will be via on-line application to the Data Manager, PANORAMA requesting approval by the PANORAMA Management Committee. Application requirements are provided on the PANORAMA website at All applications will be assessed on a case by case basis and applicants should ensure their application is comprehensive enough for it to be assessed without further explanation. Trucrypt software (available freely on-line) should be installed on the applicant s computer before data transfer can proceed. Applicants will be advised of the outcome of their application within 10 working days. Applications may be: approved as presented approved with conditions deferred pending further information being supplied or rejected. Enquiries Enquiries regarding any data received or held by PANORAMA, should be directed to the Data Manager, PANORAMA Phone: datamanager.panorama@flinders.edu.au

3 Data Access Protocol for PANORAMA held data Instructions for Applicants Access to most data held by PANORAMA will be provided solely in accordance with conditions provided by the original data guardian. However, where data held by PANORAMA has been provided for general access, the following protocol will apply: All requests for data access are to be made on-line via the PANORAMA website All sections of the PANORAMA Data Access Request Form are to be completed in full. Incomplete applications will be returned to the applicant. Enquiries regarding requests for access to data received or held by PANORAMA, may be directed to the Data Manager, PANORAMA Phone:

4 Chief Investigator s Name Position Additional Investigator(s) Contact person s name Position Contact Organisation name Business address for correspondence PANORAMA Data Access Request Form Contact phone Title Business phone Business fax Date of application Date data required Purpose of request (A maximum of 5 additional pages of a detailed proposal may be submitted with this application. The proposal should include study aims, hypothesis to be tested, significance, background, research design (including details of methods to be used) and references. In the research design, a rationale for the data requested should be provided that includes consideration of statistical analysis and power. Data may only be used for the purpose stated in the proposal.) Summary Title of Project Database from which data is required Format in which data should be supplied Ethics Approval (date approved) Institution Has funding been approved (tick) Source of Funds: Outline any consulting agreements, collaborations and/or research projects between the investigators and commercial organisations 3 Note evidence of all ethics approval clearance(s) (including a copy of the application(s)) and related correspondence should be supplied.

5 Conditions of Agreement for data transfer from PANORAMA 1. Research Project the data will be used by the recipient solely in connection with the research project specifically described in their Study Proposal, and will not be used in any research that is not disclosed and approved as part of the Research Project. Proof of ethics approval will be required before the dataset and accompanying documents are released. 2. Non-Transferability this Data Agreements is not transferable. The recipient agrees that any substantive changes made to the designated research project or the appointment of another researcher to complete the research project using the data will require a new Data Agreement with the amendments. 3. No Distribution the recipient agrees to retain control over the data and further agrees not to transfer the data, with or without charge, to any other entity or individual. Access to the data is surrendered should you cease to work on this project. 4. Non-identification PANORAMA data cannot be matched to any other information. The recipient agrees that the data will not be used, either alone or with other information, in any effort whatsoever to establish the individual identities of any of the participants from whom the data were obtained. If a record corresponds to an individual or organisation you are aware of, it is required that you do not attempt to confirm the identity of the unit or divulge that information to any other parties. 5. Payment Generally, PANORAMA does not charge for request of unit record data however depending on the extent of the analysis, PANORAMA may need to charge a service cost. 6. Weighting PANORAMA data may be weighted and PANORAMA requires that all analyses of such data will be weighted. In this case, it is required that you understand and have used data which have been weighted. The unit will provide any assistance in this area. 7. Security PANORAMA data must be kept secure so that it is not accessible by anyone who does not have authorized access to the data file. 8. Refusal to release data PANORAMA reserves the right to refuse to release data if they feel that it will be used inappropriately, on a fishing exercise, should numbers in the requested analysis categories be too small, or for any other reason. 9. Termination of agreement PANORAMA may terminate this Data Agreement if the recipient is in default of any condition of this agreement and such default has not been remedied within thirty (30) days after the date of written notice of such default by PANORAMA. 10. Publication prompt publication of the results is encouraged. The data must be referenced appropriately in any resulting publications. The recipient agrees to provide a copy of the manuscript (or other disclosure document, such as a media release) to PANORAMA at least thirty (30) days prior to submission for publication or release, in order to ensure compliance with Items 3, 4, 5, 6, 11 of this agreement. A copy of all such publications will be held in PANORAMA central register of publications. 11. Acknowledgement Publications emanating from data requests to PANORAMA must contain the disclaimer: The opinions expressed in this work are those of the authors and may not represent the position or policy of PANORAMA.

6 We/I hereby seek permission from PANORAMA to undertake the research work detailed in the attached proposal according to the conditions specified by PANORAMA (detailed in this agreement). We/I will not use the data for other studies, or distribute it or any part of it to third parities, unless approval has been obtained following a formal written request, or we/i have received a written request from PANORAMA to do so. We/I will pay for the cost of supplying data from PANORAMA if so requested. We/I will list PANORAMA as an acknowledgement on any resulting publications. Signed: (Chief Investigator) Date: Additional Investigators: Signed: Date: Signed: Date: Signed: Date: