Social Media Policy

Online social networking and forums provide an important mechanism by which GCUK communicates with its constituent stakeholders about activities and developments likely to be of interest, and for patients and carers to communicate with others sharing their concerns and raising issues about their treatment. This policy sets out how GCUK will utilise such platforms and how it will monitor and moderate activities to ensure that participants feel safe and supported.


Social Media – includes all platforms such as Twitter, ListServ etc. where GCUK has a presence.
Users – includes anyone who accesses GCUK Social Media platforms whether patients, carers, health care practitioners or others.


This policy recognises that some platforms, such as Twitter, are open and hence GCUK is not in a position to restrict, access whilst others, such as ListServ, are closed providing for closer oversight.

GCUK will not seek to restrict free-speech or debate about GISTs or their treatment. However, it has a responsibility to monitor activity on social platforms it uses to ensure that messages are appropriate and respectful. The objectives of this policy are to ensure that GCUK discharges its responsibilities so that:

• Access to social media is open and equitable.
• Clear expectations for conduct are set.
• Participants are encouraged to share experiences and provide help and support to others.
• Social media is monitored so that offensive content can be removed and any misleading or false content challenged.


The policy will be published on the GCUK web pages and the associated Code of Conduct (see Appendix below) shared with new members of the ListServ and any other platforms.
The Board will monitor social activity and consider any issues that arise. GCUK will seek to remove offensive content and to correct any misleading or false content as quickly as possible.
Implementation of the policy will be kept under annual review.


Where a breach of the Code of Conduct is considered minor or unintentional then the participant will initially be reminded of the code and of her or his responsibilities.
Anyone found to be in persistent breach of the Code of Conduct or where the breach is considered egregious will have their access to social media platforms suspended (where possible) on the authorisation of either the Chair or Vice-chair of GCUK.
Suspensions will be brought to the attention of the Board who may decide to reinstate access immediately or after delay, or to deny access permanently. Outcomes of decisions will be communicated to individuals, with explanations. There is no right of appeal.

GCUK Code of Practice for online activity

Users must:
• Treat others and their experiences with respect.
• Avoid personal attacks on health care professionals and others involved in the care and support of GIST patients.
• Respect confidentiality and not share the views or experiences of others beyond the forums unless approved by that person.

Users should:
• Be supportive of those with a GIST and those providing care, treatment and support for those undergoing treatment sharing their own experiences when appropriate
• Share blog posts, articles and other content which might be of interest to the community.
• Ensure that messages are as short and succinct as possible.
• Avoid using capital letters except where required.
• Indicate their home location and if they are willing to be contacted.

Users must not:
• Create or transmit material that might be defamatory.
• Discriminate on the basis of race, age, sex, religious or political belief, national origin, disability, sexual orientation or any other characteristic protected by UK law.
• Post articles that have copyright protection. (Post the URL, i.e. website address, instead).
• Post messages, images or links to material or content that is inappropriate for other users.
• Use platforms provided by GCUK for advertising purposes.
• Use platforms provided by GCUK for illegal or criminal activities.
• Send offensive or harassing material to others.
• Broadcast views on social, political, religious or other non-GIST related matters.
• Post, upload, forward or link spam, junk email, chain emails and messages.
• Send or post messages or material that could damage GCUK’s image or reputation.

GCUK will:
• Ensure that all users are aware of expected practice.
• Monitor activity and take appropriate action where necessary.

Download: a PDF of the GCUK Social Media Policy...