1) Terms of use

2) Data Protection Policy

Terms of Use

Note: As part of the iPCRN upload process these Terms of Use must be agreed to for each and every upload. You should not proceed with uploading any data to the iPCRN if you do not agree in full with these Terms of Use.

1.1 GENERAL

The Irish Primary Care Research Network, iPCRN, website is jointly operated by the RCSI/HRB centre, NUIG/WestREN, and the ICGP (the “Research Partners” of the iPCRN) represented by the iPCRN Steering Committee. 

Your use of the system and the information on this system is subject to our terms and conditions of use which we have set out below (the “Terms”), and by accessing and using the iPCRNwebsite you agree, and you are signifying your agreement, that you have read, understood and agree to be bound by and subject to the Terms.  Please ensure that you read the Terms carefully and in their entirety.  
IF YOU DO NOT AGREE TO THESE TERMS DO NOT USE THIS ONLINE APPLICATION TOOL. 

1.2 PERMITTED USE OF THE IPCRN WEBSITE

The purpose of the iPCRN Website is to facilitate the participation by general practices in clinical research for the benefit of their patients, and to support correspondence and dissemination of knowledge in clinical research in Ireland and internationally. If you decide to rely on any of the information on the iPCRN Website, you do so at your own risk.  Your use or reliance on content placed or submitted to this Portal is entirely at your own risk and to the greatest extent permitted by law, you hereby waive all rights and claims that you may have against us, or other providers of information in respect of such content and/or your or any third party’s use and/or reliance on it.  

We cannot guarantee that the information published on iPCRN website is error free and therefore you acknowledge that the information available on or through this system may include inaccuracies or errors, despite our efforts to make sure this is not so. The Research Partners disclaim all liability for any errors relating to the information.  

You agree not to use or access the iPCRN website from jurisdictions in which it or its contents are restricted or prohibited by local law.

1.3 APPLICATION

As advised by the data protection commissioner all patient identifiable data will be removed by your software provider prior to being uploaded to the iPCRN. You represent and warrant that the data you provide to the iPCRN Website is true, accurate and up-to-date, and has not been edited or altered. A sample upload file is available on the iPCRN website,  HERE. Your software provider can provide further information with regards creation and transport of the data file to the iPCRN site.

The iPCRN Website may, at its absolute discretion, terminate your activity on the portal without prior notice at its sole discretion.

1.4 LIMITATION OF LIABILITY

To the maximum extent permitted by applicable law, neither the Research Partners nor any of their officers, directors, employees, agents, partners, licensors, affiliates or other representatives will be liable for loss or damages arising out of or in connection with your use of iPCRN Website. Neither the Research Partners or any of their officers, directors, employees, agents, partners, licensors, affiliates or other representatives will be liable for any other content offered on, through or from the IPCRN Website including, but not limited to, direct, indirect, incidental, special or consequential loss or damages, loss of data, loss of income, profit or opportunity, loss of or damage to property and claims of third parties, even if the Research Partners has been advised of the possibility of such loss or damages, or such loss or damages were reasonably foreseeable.  In no event shall the Research Partners nor any of their officers, directors, agents, employees, affiliates or other representatives be liable for any loss or damages whatsoever resulting from the statements or conduct of any third party or the interruption, suspension or termination of the iPCRN Website, whether such interruption, suspension or termination was justified or not, negligent or intentional, inadvertent or advertent. 

Without limiting the foregoing, under no circumstances shall the Research Partners or any of theirofficers, directors, agents, employees, affiliates or other representatives be held liable for any delay or failure in performance resulting directly or indirectly from acts of nature, forces or causes beyond their reasonable control, including, without limitation, typographical errors, internet failure, computer equipment failures, telecommunication failures, other equipment failures, electrical power failures, strikes, lay-way disputes, riots, interactions, civil disturbances, shortages of labour or materials, fires, storms, explosions, acts of God, war, governmental actions, orders of domestic or foreign courts or tribunals, or the non-performance of a third party.

1.5 INDEMNITY

You agree to defend, indemnify, keep indemnified and hold the Research Partners (and as applicable, their officers, directors, employees, agents, licensors, subsidiaries, affiliates, suppliers and any of our third party information service providers) harmless against any and all demands, losses, expenses, damages and costs, including legal costs, and claims made by or liabilities to any third party resulting from any activities resulting from your use or misuse of the system or otherwise arising out of your breach of these Terms.

1.6 USE OF THE IPCRN WEBSITE 

You agree not to use the iPCRN Website or any of its facilities and/or services for any purpose that is unlawful or prohibited by these Terms including but not limited to: 

a) any purpose that is fraudulent, unlawful or prohibited by these Terms;
b) copying, modifying, transmitting, displaying, distributing, performing, reproducing, licensing, publishing, creating derivative works from, transferring or selling any information contained on or forming part of this Portal, or otherwise using such content of the iPCRN Website for resale, redistribution or for any other commercial use whatsoever;
c) accessing or using theiPCRN Websitein and from jurisdictions which restricts or prohibits same by local law;
d) accessing or using the iPCRN Website in any manner which could damage, disable, overload, flood, mail bomb, crash or impair the iPCRN Websiteor interfere with any other party’s use and/or enjoyment of the iPCRN Website; transmitting material which may cause harm to our or any other party’s computer systems, including but not limited to any material which contains viruses, Trojan horses, worms, spyware, adware, time bombs, cancel-bots or other computer programming routines or engines that are intended to damage, destroy or otherwise impair a computer’s functionality or the operation of the iPCRN Website;
e) harassing, harming or abusing another person, or contacting, advertising, soliciting, selling to any other person without their prior written consent or transmitting or relaying spam, junk email or chain letters;
f) accessing data or materials not intended for your use; logging into a server or account which you are not authorised to access; attempting to probe, scan or test the vulnerability of a system or network or to breach security or authentication measures without proper authorisation; or impersonating any person or entity, or falsely stating or otherwise misrepresenting their identity or affiliation in any way;
g)attempting to gain unauthorised access to the iPCRN Website , or any computer systems and networks connected to Student Mentor System, through hacking, password miming or any other means; or
h)harvesting or otherwise collecting by any means any program material or information (including without limitation email address or details of other Users) from the iPCRN Website or monitoring, mirroring or copying any content of the iPCRN Website without the prior written consent of the iPCRN Steering Committee.

 

1.7 LINKS TO THIRD PARTY WEBSITES 

The iPCRN Website may contain links to third party websites. Your use of third party portals is subject to the terms and conditions of use contained within each of those websites. Access to and use of any other websites through the iPCRN Website is at your own risk. The Research Partners are not responsible or liable for the accuracy of any information, data, opinions, or statements made on third party portals or the security of any link or communication with those websites. The Research Partners reserve the right to terminate a link to a third party website at any time. The fact that the Research Partners provides a link to any third party website does not mean that the Research Partners endorse, authorise or sponsor that website, nor does it mean that the Research Partners are affiliated with the third party websites, owners or sponsors. The Research Partners provide these links merely as a convenience for those who use the iPCRN Website.

1.8 AVAILABILITY

Although the Research Partners endeavour to ensure the iPCRN Website is available at all times, there may be occasions when interruption to the iPCRN Website may occur, e.g. to allow maintenance, upgrades and emergency repairs to take place, or due to failure of telecommunications links and equipment that are beyond the Research Partner’s control.  You agree that the Research Partners shall not be liable to you for any loss incurred by you resulting from your failure to access the iPCRN Website or from any modification, suspension or discontinuance of the iPCRN Website.

1.9 CHANGES IN TERMS AND CONDITIONS

To the greatest extent permitted by applicable law, the Research Partners reserves the right to change the content, services, presentation, performance, user facilities and/or availability of any part of the iPCRN Website at its sole discretion, including these Terms from time to time.  Please read these Terms prior to every visit that you pay to the iPCRN Website as the Terms are subject to change.

1.10 PRIVACY STATEMENT

The RESEARCH PARTNERS respect and protect the privacy of the individuals who access the IPCRN website. For details of the type of information collected by the iPCRN Website, the uses for which the information collected by the iPCRN Websiteis used and the circumstances under which the iPCRN Website discloses information, please read the Privacy Statement which is hereby incorporated into and forms part of these Terms.

1.11 PROVISION OF INFORMATION

Information sent over the internet cannot be guaranteed to be completely secure as it is subject to possible interception or loss or possible alteration. For this reason all patient identifiers have been removed from the file prior to upload. Your software provider has created a secure upload – data transfer protocol for transmitting your data to the iPCRN site. You understand and agree your service provider is responsible for the transfer of this data to the iPCRN site. We are not responsible for any information sent over the internet and will not be liable to you or anyone else for any damages or other loss incurred in connection with any information sent by you to us or any information sent by us to you over the internet.

1.12 JURISDICTION AND GOVERNING LAW

The iPCRN Website is controlled and operated by the Research Partners from Ireland. In accessing the iPCRN Website, you do so at your own risk and on your own initiative, and are responsible for compliance with local laws, to the extent any local laws are applicable. 

The Terms shall be governed by and construed in accordance with the laws of Ireland, and you hereby agree for the benefit of the Research Partners and without prejudice to the right of the Research Partners to take proceedings in relation to the Terms before any court of competent jurisdiction, that courts of Ireland shall have
jurisdiction to hear and determine any actions or proceedings that may arise out of or in connection with these Terms, and for such purposes you irrevocably submit to the jurisdiction of such courts.

1.13 WAIVER

The failure of the Research Partners to exercise or enforce any right or provision of the Terms shall not constitute a waiver of such right or provision.  If any provision of the Terms is found by a court of competent jurisdiction to be invalid, the parties nevertheless agree that the court should endeavour to give effect to the parties' intentions as reflected in the provision, and the other provisions of the Terms remain in full force and effect. 

1.14 ENTIRE AGREEMENT

You acknowledge that the Terms constitute the entire agreement between you and the Research Partners and govern your use of the iPCRN Website superseding any prior agreements between you and the Research Partners. In the case of inconsistencies between the Terms and information included in off-line materials, (e.g., promotional materials and flyers), the Terms will always prevail.  You may also be subject to additional terms and conditions that may apply when you use affiliate services, third-party content or third-party software.

1.15 SUSPENSION/TERMINATION

The Research Partners may at any time, without notice to you, suspend or terminate your access to the iPCRN Website, wholly or partially for any reason, including without limitation, where you are in breach of these Terms. If the Research Partners cannot verify or authenticate any information submitted to the iPCRN Website, or if for any reason the Research Partners suspend or discontinue the iPCRN Website the Research Partners reserve the right, at their sole discretion, to pursue all of its legal remedies upon breach by you of these Terms, including but not limited to deleting and discarding any data from the iPCRN Website and restricting your ability to access the iPCRN Website. Further, you agree that the Research Partners shall not be liable to you or any third party for any modification, termination or suspension of your access to the iPCRN Website.  

For more information visit the FAQ section of our website.

An example of the 'Diabetes Upload - Audit file' sent to the iPCRN is available HERE.

Data Protection Policy

A PDF version of the iPCRN Data Protection Policy Document is available for download HERE.

2.1 Key Features

• The data is anonymised, no patient identifiers are extracted from the practices;
• Special protection is employed to protect practice identity;
• The iPCRN servers are in secure environments;
• Use of the data is strictly controlled;
• There is a named guarantor of the data.

2.2 Summary

The Irish Primary Care Research Network (iPCRN) utilises anonymised data only. Individual patient data cannot be identified from the iPCRN database. It conforms to the Data Protection Acts 1998 and 2003 and the guiding principles of the UK Medical Research Council document on ‘Personal Information in Medical Research’ [1].

The Data Protection Commission has been specifically consulted in the development of the network and has approved it’s processes. The network is designed to facilitate general practitioners in fulfilling their medical competency requirements as specified by the Medical Practitioners Act 2007.

The named data guarantor is: Prof. Andrew Murphy, Professor of General Practice, National University of Ireland, Galway.

2.3 Anonymisation

The data received by the iPCRN is anonymised by the GP Software Vendor before it is transmitted. Identifiable data is either purposefully excluded such as names, addresses and GMS numbers or de-identified. A specific example of de-identified data used by the iPCRN is the year of birth that is supplied instead of the day, month and year. Other data such as consultation dates and investigation dates are also de-identified.

2.4 Record Linking

As the data received by the iPCRN is anonymised by the GP Software Vendor before it is sent and explicitly identifiable data is either removed or de-identified at that point, it is not possible to link individual patient data.

2.5 Consent

Consent is received from the general practice to extract and upload the anonymised data to the iPCRN servers. As the data is anonymised, individual patient consent is not required.[2].

2.6 Security

The iPCRN website and the iPCRN research data are located on two separate password protected servers in separate data centres. The data centres have achieved ISO27001:2005 Security Management Standards. Data on the servers are managed by the Health Research Board Galway Clinical Research Facility [3].

2.7 Access Controls

Access to the anonymised data is restricted to two individuals – one clinical and one technical system administrator. Access to the buildings, data floors and individual areas where the data is stored is via individually programmed access cards – using biometrics and visual identification – ensuring secure, single-person entry. 

2.8 Retention of Data

The iPCRN will only store data relevant to the research projects that are underway and will not use the data for any other reason than the specified research purposes. 

2.9 Management of Outliers

Any data that could be sent to the iPCRN is analysed by the GP Vendor Software in advance and any outlying data points that could potentially identify a patient are excluded from the final data that is sent.

2.10 References
1. http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC002452
2. http://www.dataprotection.ie/documents/guidance/Health_research.pdf
3. http://www.nuigalway.ie/hrb_crfg/index.html

All practices must infom patients if they are involved in research. The ICGP have provided us with a Waiting Room poster which has been approved by The Data Protection Commissioner and must be displayed in all practices involved with the IPCRN. This is available for download HERE.