Further to the text below, by choosing to join the CareRing Community and participate in any of the insights initiative, I also understand, acknowledge and agree to the following:
I am an employee of Roche or Genentech, including contractors.
I understand my participation in CareRing and any of the insights initiatives available via CareRing is voluntary.
I understand that all information shared and made available on the CareRing community whether in the forum or in a specific insights initiative and including information about other CareRing community members is confidential and should be treated as such with CareRing community members and all Roche employees, including affiliates.
I understand my participation in CareRing and any of the insights initiatives is not for my personal treatment purposes or the treatment purposes of the person I’m caring for.
I understand that participating in CareRing and any of the insights initiatives is not a substitute for professional medical advice, diagnosis or treatment.
I understand that the information provided in CareRing and any of the initiatives is provided for informational purposes only.
I understand my participation in CareRing and any of the insights initiatives is not for purposes that would require my participation in a clinical trial.
I understand that CareRing is not the place to report adverse events and/or side effects for treatment, including Roche products. I need to follow Roche internal processes to report adverse events and/or side effects for treatment.
I understand I have to discuss my potential engagement in a insights initiative upfront with my line manager, should this specific insights initiative requires an active commitment during my working hours.
I understand that neither Roche nor any of its employees or agents has required me to participate in CareRing or any of the insights initiatives.
I understand that I will not receive any payment for participation in CareRing and any of the insights initiatives.
I understand I am not to discuss any confidential information I may learn during this activity with anyone outside of the CareRing community.
Roche does not accept any liability for any damages or injury (including disease worsening), whatsoever, that may be caused through my participation in the CareRing community.
I understand I am free to stop participation in CareRing and any of the insights initiatives at any time.
As stated in the Roche Directive Collaborating with Patient Groups and Patients, we recognise the unique experience, expertise and perspectives of Patients. Patients and their respective Caregivers are critical in helping Roche to gain a greater understanding of what it is like to live with a disease and the challenges facing Patients, their Caregivers and their families.
We are continually building our partnership with different Patients Advocacy Groups (PAGs) in different disease areas and regions or countries and these relationships are important to advance our understanding of the science and help patients access medicines that meet their needs.
We also think that our employees are also a great source of knowledge, specifically the ones that are also patients and/or caregivers and we believe in building a partnership with these employees who would be willing and interested in sharing their stories to support our teams in understanding what it is like to live with a disease, what are the unmet needs and the concrete impact that disease can have on patients and their families.
CareRing is a global, internal community for Roche and Genentech employees that are patients and/or caregivers. It allows them to share experiences and personal stories and provide support for each other. In addition to being able to share with other employees, CareRing members will also be able to contribute with their experience and insights into a disease area which is personally relevant for them and to interact with experts of the business to learn more about the latest developments and support offer in their disease area.
By liaising with employees that are also patients and caregivers and inviting them to directly provide input into research and development initiatives in disease areas most relevant to them, the Business functions will use this opportunity to learn from those affected by disease, either as patients or caregivers. By partnering with patients and caregivers, Business teams will be able to better understand their unmet needs and will be able to include these insights into our pipeline development to ensure we are putting patients and their family in the center of our work.
[Patient] I acknowledge that I have voluntarily agreed to participate in sharing information about my disease and treatment, to exchange about my experiences, and support the continued Roche focus of being patient centric and to further enhance inclusion of the patient and caregiver perspective throughout the development lifecycle.
[Caregiver] I acknowledge that I have voluntarily agreed to participate in sharing information about my role as caring for someone who was diagnosed with a disease and/or is ongoing treatment, to exchange about my experiences, and to support the continued Roche focus of being patient centric and to further enhance inclusion of the patient and caregiver perspective throughout the development lifecycle.
[Both] In consideration of being permitted by Roche to participate in CareRing and any of the insights initiatives, I hereby waive, release and discharge any and all claims for damage which I may have as a result of my participation. I further agree to indemnify and hold harmless, Roche, its affiliates, officers, employees and agents from any loss, liability, damage, cost or expense which they may incur as the result of my participation.
[Both] I am at least 18 years of age. I have carefully read this Agreement and Release and fully understand its contents. I am aware that this is a release of liability between Roche and me. I participate in providing patient/caregiver experience, disease and treatment information of my own free will.
I understand that through choosing an Avatar name in the community then I will be anonymous to other participants, however if I choose to arrange a direct connection outside this on-line community then I may need to disclose my identity.
If I volunteer to take part in a insights initiative then I will be asked to complete a separate consent for this initiative and I can choose how to participate.
I understand that Admins will monitor the usage of the platform e.g assessing numbers of people registered, to sub-communities, frequency of use, time engaging on the platform etc.
I understand that all information shared on the CareRing Community, whether by anonymous or identifiable members and whether in the forum or in a specific insights initiative and including information about other CareRing community members is confidential and must be treated as such with CareRing community members, Roche/GNE employees, including affiliates, and 3rd party working on behalf of Roche (eg agency). This includes but is not limited to: no monitoring, no transfer of data, no transfer of comments made in the forum, sub-communities and initiative insight (other than in accordance with the original purpose of the initiative insights).
I understand that participating in CareRing and any of the insights initiatives is not a substitute for professional medical advice, diagnosis or treatment.
I understand that the information provided in CareRing and any of the initiative is provided for informational purposes only.
You are encouraged to seek professional diagnosis and treatment for medical conditions.
You agree that CareRing has no responsibility to provide medical advice or take any medically related action in response to any information you provide to the site, the forum or the initiative owner.
CareRing does not recommend or endorse any specific studies, treatment, tests, procedures, physicians, opinions, products, or other information that may appear on CareRing or on links reached through CareRing and its forum.
CareRing has no control over any clinical trial or treatment described on the site, and we cannot guarantee the accuracy of information about any clinical trial or treatment described on CareRing by its users. Should you want to have more information about Roche products and clinical trials, we encourage you to look for product specific information on the RocheNet product page or to access the information available on the Forpatients.Roche.com site or on the clinicaltrials.gov site.
I understand that CareRing is not the place to report adverse events and/or side effects for treatment, including Roche products. As a reminder, as per the Roche PharmacoVigilance Policy and the Roche Product Vigilance Training, which are mandatory training for all Roche staff, all Roche employees are responsible for reporting any adverse events, special situations or product complaints that they become aware of to Drug Safety.
If you become aware of any adverse events, special situations or product complaints while reviewing the CareRing site, you must report them to the Local Safety team within one business day of awareness - see useful links below.
Local Safety Reporting - Link to contact details
PV Policy (GOV-0100100) - Link in Condor
Roche Product Vigilance Training (completed via CHRIS LSO) - Link for refresher
Your privacy is very important. Roche uses many safeguards to protect it, in accordance with applicable data privacy laws. Should you decide to participate in the CareRing community, this Privacy Notice outlines the types of personal data Roche may collect within the scope of CareRing, and any initiative made available in CareRing (“Insights initiatives”), the means by which Roche may collect, use, or share these data and your choices regarding the use of your personal data. Personal data as mentioned here refers to the mandatory data you will have to enter to create your profile on the CareRing community: name, Roche/GNE User Unix id and e-mail address - these are also referred to as “Profile data”. Post, comments and interactions among members that will be made in the CareRing community are also considered as “data” but, should you choose to, will remain anonymous and won’t be linked to you directly.
F. Hoffmann-La Roche Ltd, Grenzacherstrasse 124, CH-4070 Basel, Switzerland, email: [email protected] (“Roche”) is the data controller.
In the event that your personal data is covered by the EU General Data Protection Regulation (EU) 2016/679 (“GDPR”): EU representative of F. Hoffmann-La Roche Ltd is Roche Privacy GmbH, Emil-Barell-Str. 1, D-79639 Grenzach-Wyhlen.
Please direct any questions and requests related to this information to F. Hoffmann-La Roche Ltd, Global Privacy Office, Grenzacherstrasse 124, CH-4070 Basel, Switzerland, email: [email protected].
Your personal data is collected and used so that you can participate in a Roche community called CareRing (“CareRing Community”).
Your personal data is collected and processed on the basis of your consent as per the below section (“Consent to the processing of personal data”).
Mandatory data you will have to enter to create your profile on the CareRing community:
Name
Roche/GNE Unix user ID – for confirmation of CareRing members being a Roche/GNE employee
E-mail address
Optional information that can be provided:
Role (Patient or Caregiver)
Specific indication(s) or condition(s) or disease(s) to facilitate the creation and/or joining of sub-communitie(s)
Language,
Location: Roche Site, Country of Residence, to facilitate meet-ups and community events.
Recipients of your data may be Roche’s affiliates around the world including in countries with privacy standards different from those in your country. Our Roche affiliates will use the data for the same purposes as we do. A list of Roche’s affiliates is available in the current annual report which can be found in the Investors section of www.roche.com.
Additional information in case your data is covered by GDPR: Regarding the exchange of data within the Roche Group, contracts containing the EU Standard Contractual Clauses according to EU Commission decisions of 27 December 2004 (2004/915/EC) and 05 February 2010 (C(2010) 593) constitute appropriate and suitable safeguards to ensure compliance with GDPR.
Roche Admins will only have access to limited information required for the sole purpose of granting access to closed sub-communities, optimising the platform and removal of data if people have left the Roche Group companies. Access to such limited information and to the optional information such as role, condition/indication and location may be used to help determine how the community can be engaged in voluntary Insights initiatives. CareRing Community members may also voluntarily provide personal information when deciding to participate in a specific Insights Initiatives requiring participants to disclose their names or location. CareRing members will be informed ahead of agreeing to participate in a Insights Initiative if the methodology used to collect insights will require disclosure of personal information (eg Face to Face or hangouts meeting) or not (eg online survey). In cases when disclosure of personal information is required, the full name won’t be included in the summary or report of the meeting and the email address may be collected in order to be able to send meeting invite(s) and/or the meeting’s summary for review to the participants of an Insights Initiative, after the meeting.
Data will be stored by KIT United SAS, an EU company (France) providing the online platform, Hivebrite, used for the CareRing community.
Data processor for the (web based) Hivebrite system is KIT United SAS, which established appropriate and suitable safeguards to ensure compliance with GDPR. .
Your personal data will be stored during the time your are registered as a participant in CareRing Community. If you choose to leave CareRing Community or Roche or one of its affiliates then your personal data will be deleted.
Provided your personal data is covered by GDPR, please note that you have the right to access it and get a copy of your personal data. If you have found that your personal data are inaccurate or incomplete, you also have the right to request that these data be corrected. You can also request that your personal data be deleted if it is no longer needed or request the restriction of personal data.
Since the data processing is based on consent, kindly note that you have the right to withdraw your consent at any time, however, without affecting the lawfulness of processing based on consent before its withdrawal. To exercise your right to withdraw consent, please see contact details in the section “Identity and contact details of the data controller” above.
In all of the above cases, there may be certain limitations to Roche’s ability to respond to these requests. Roche will try to be as responsive to your requests.
In order to make any of the above requests, it is recommended that you reach out to Roche at the information provided above. Note, however, that for deletion/erasure requests, we may keep your name and information with a flag in order for us to comply with GDPR and to ensure that we will not contact you or use your personal data further.
If you have additional questions, concerns or complaints as to how Roche is using your information, you should contact Roche. If you would like specific information about local data processing, you can also reach out to Roche’s local Data Protection Officer. In the event you have the impression that our data processing is non-compliant with GDPR or are unable to resolve a privacy complaint with Roche, you are entitled to lodge a complaint with the responsible supervisory authority.