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RPSG GDPR, PRIVACY & PROTECTION POLICY 2018

RPSG Policy 2018
Primarily the RPSG is a closed Facebook support group and this website is an educational/ information portal for patients and carers in Chronic Kidney Disease (CKD). The RPSG is covered under Facebook’s data privacy and protection policy. The General Data Protection Regulation (GDPR) creates consistent data protection rules across the EU. The GDPR has been in effect as of 25th May (2018) and applies to companies based in the EU, as well as to companies around the world who provide or offer goods or services, and who process data from or about people in the EU.

Whilst the key principles of GDPR build on current data protection rules in the EU, GDPR (2018) has wider scope, and more prescriptive standards and substantial fines for compliance violations. For example, it requires organisations to obtain a higher standard of consent from customers, where relevant, and broadens individuals’ rights with respect to accessing and porting their data. The RPSG is not a UK registered charity or business in the ‘traditional sense’. The RPSG website is non-funded educational/ information portal for patients in CKD. The RPSG will continue to review policy and may/ will amend its disclaimer, terms and conditions as the support group continues.

RPSG Privacy
The RPSG is committed to keeping personal identifiable information (PID) details private. The RPSG will continue to maintain its privacy policy. Whether or not patients and/ or carers (members generally) choose to post as themselves or anonymously, the RPSG team ensure that no private information is disclosed (for example, email address, postal address). Here is a link to Facebook’s commitment to data protection and privacy compliance with GDPR https://www.facebook.com/business/news/facebooks-commitment-to-data-protection-and-privacy-in-compliance-with-the-gdpr

  • The RPSG will not collect/ publish any data from your location, age and gender according to Facebook General Data Protection Regulation (GDPR).
  • The RPSG will chose not to collect person identifiable information (PID) so members can post comments in a closed Facebook group.
  • Details of visits to the RPSG website, comments, discussions, Twitter, Instagram and Research Gate are used to raise and share wider understanding of CKD. However, PID is not declared.
  • If an RPSG member has any concerns always contact the site ‘admin/ research’ via email address rpsg1@outlook.com, and /or ‘moderator’ who will highlight further clarity.
  • The RPSG data stores data on via its social media servers that is located outside of the European Economic Area.

Security
Providing best practice through CKD information and educational support is at the heart of what we do. We have a legal and ethical responsibility to handle confidential and sensitive information carefully and securely, and we are fully committed to doing that in a way that maximises its utility while preventing unauthorised or inappropriate disclosure. The RPSG is respectful of the nature of data via closed Facebook group, where it comes from and what it means. The RPSG is committed to keeping membership information secure by utilising controls and processes to prevent unauthorised access and protecting PID. Unfortunately, in the case of any security breach The RPSG cannot guarantee that data (profiles, posts, comments and/ or threads) will remain completely secure and undamaged (posts may be lost). This process is covered by Facebook. Please note that any posts on the RPSG Facebook page are made entirely at members own risk. The RPSG will post on the Facebook group/ this website to help meet the following:

  • To highlight patient and public involvement research opportunities
  • To highlight what gaps in renal care and knowledge need to be filled through research our care
  • To support research and innovation, including potential clinical trials patients and carers might be interested in participating/ getting involved
  • Increase recruitment in clinical and social science research
  • To raise understanding of use of social media to increase CKD awareness
  • For research purposes – we will remove any PID from your posts / contribution and share the data in order to influence policy, improve communications services, teaching, etc.
  • To respond to any messages, complaints or queries we may receive
  • To offer better awareness and support with any requests we receive
  • To perform statistical analysis and create reports and help us understand the use of social media surrounding CKD as a long-term condition (LTC) through trends
  • To create opportunities for researchers and patients to co-create renal projects
  • To create/ co-create collaborative research opportunities and projects
  • To disseminate/ highlight RPSG research publications
  • To continuously highlight that the RPSG is an evidence-based support group and a place where awareness and research meet
  • The RPSG support academics/ research advertise for renal research where appropriate and where this meets RPSG goals
  • To RPSG social media platforms as a medium to highlight RPSG on-going efforts to raise CKD awareness (for example, a poll to highlight the importance of patient and public involvement in research).
  • To use RPSG social media platforms and website as a medium for attracting renal education, shared-decision making process for patients in CKD
  • To use the RPSG social media platforms and website to implement mixed method research to bridge gaps in renal care (i.e. quantitative and qualitative – mixed methods research in collaboration with academic, charity, and/ or commercial/ Industry)

Disclosure of Information
The RPSG team administrators or moderators may choose to disclose your personal information (if you provide identifiable data) to a healthcare professional if we feel you are at risk. In this case we will contact you to explain the decision.

Restricting Posts
All posts/ comments are subject to moderation. The RPSG team may choose not to post any contribution from you that: 1) Could cause offence or distress to other group members; 2) Will set up a negative example for others in the group and 3) Specifically criticises or abuses any named individual including fellow group members. Members are always encouraged to post concerns about renal care/ service without giving names and/ or using abusive language. This is inherent in the RPSG Facebook group disclaimer. RPSG members can email via the RPSG email address and/ or message co-founders/ chief administrators. The RPSG team work collaboratively (i.e. between each other) to ensure protection and privacy is enforced. The RPSG deter/ block individual/s from the Facebook group instantly if it is likely the general membership is at harm. The RPSG team will post the reasons why such as decision is made.

Links to Websites
The RPSG membership, admin, moderators and/ or research leads may provide links to other websites via the RPSG Facebook group but is not responsible of any information published on those platforms.

User Generated Content
This RPSG website/ the RPSG closed Facebook page is based on the principles of ‘user generated content’, which means that it includes information provided by RPSG members, which may not necessarily apply. Before using the information seen on this website in any way please ensure that you contact and check with a local healthcare team. Please remember that every individual is unique and will have different health requirements. The RPSG website acts as an information portal for renal patients internationally. The views via the support group are representative of an international online renal community and so not specific to an NHS trust or international healthcare trust.

RPSG Membership Rights
RPSG members have the right to delete any data posted by them specifically, including their accounts by notifying the administrator/ moderator via rpsg1@outlook.com. RPSG members also have the right to notify an administrator/ moderator if they wish their data is not used for research purposes. Please take note that all data used for research purposes will be made anonymous. There will be no person identifiable information (PID).

The RPSG Team
The RPSG started out as a project affiliation with the North Bristol NHS Trust. However, has grown internationally and thus has become independent. The research, administrators and moderators have several important roles to encourage CKD research and awareness. However, the team will continue to act according to GDPR Policy and Protection for its membership. The RPSG membership and wider renal community will be informed of any formal updates through this website.