Social media policy

Consultants, contractors, and volunteers (including trustees) of the charity will be required to comply with the content of this policy.

Our commitment

We are committed to the values of integrity, accountability and openness while raising awareness of kidney cancer and the services we provide to help support people affected by this devastating disease. This policy is intended to ensure that we use social media responsibly to spread our message and share information, while protecting the reputation of the charity and avoiding adverse publicity, which could seriously damage the work that we do.

The power of social media for sharing information and for communicating with individuals and communities is evident from the statistics: more than 90% of adults worldwide now use some form of social media on a regular basis, and there are nearly 50 million users of Facebook and 19 million users of X (formerly Twitter) in the UK.

Due to the widespread use of social media, it is a form of communication that we can use to enhance our support services for the kidney cancer community. Information, views, and experiences can be shared within the community in a matter of hours, and it is much less resource intensive than traditional engagement techniques. The benefits of participating in social media have gone beyond simply social sharing to building a reputation and raising awareness amongst the kidney cancer community and the public. Social media differ from paper-based media (e.g., magazines and newspapers) or traditional electronic media (e.g., radio and TV broadcasting) in many ways, including quality, reach, frequency, usability, immediacy, and permanence.

What is social media?

Social media is a term used to describe web-based technologies that facilitate the creation and sharing of information, ideas, experiences, interests, and other forms of content via virtual online communities and networks. There are a variety of social media services currently available, which have the following common features:

  • Social media are interactive web-based applications
  • Content is user-generated, e.g., text posts or comments, digital photos, or videos
  • Users create service-specific profiles for the website or application that are designed and maintained by the social media organisation
  • Social media facilitates the development of online social networks by connecting a user’s profile with those of other individuals or groups.

Social media uses web-based technologies, desktop computers and mobile technologies (e.g., smartphones and tablets) to create highly interactive platforms through which individuals, communities and organisations can share, create, and discuss online. They provide an alternative means of communication between businesses, organisations, communities, and individuals, and change the way individuals and organisations communicate.

Social media is about engagement, participation and relationship building. In addition to having conversations and giving opinions, visitors to social media sites also like to share information. This can have a powerful amplification effect, where articles, videos or images are shared between thousands of people. Millions of people and businesses worldwide use social media, changing the way organisations work and engage with people.

Social media platforms

The term social media is usually used to describe social networking sites such as:

  • Facebook– an online social networking site that allows users to create their personal profiles, share photos and videos, and communicate with other users
  • X (formerly Twitter) – an internet service that allows users to post “tweets” for their followers to see updates in real-time
  • Instagram– an online photo-sharing application and social network platform for mobile devices that allows users to edit and upload photos and short videos.
  • LinkedIn– a networking website for the business community that allows users to create professional profiles, post resumes, and communicate with other professionals and jobseekers
  • Pinterest– an online community that allows users to display photos of items found on the web by “pinning” them and sharing ideas with others
  • Snapchat– an application for mobile devices that allows users to send and share photos of themselves doing their daily activities.

Other social media technologies include the following:

  • Forums and message boards – usually based around a specific subject area, these can be powerful tools for patient participation as visitors to the site will already have an interest in the topics covered
  • Blogs – these are small websites set up and run by individuals and organisations as a vehicle for their own writing, marketing, and publishing
  • YouTube – a free website devoted to viewing, sharing, and commenting on video clips.

Guidelines for the use of social media

We use various social media platforms, such as Facebook and X (formerly Twitter), for communicating with the UK and global Kidney cancer community. Social media relies on the development of relationships: the more relationships we have, the more people will become aware of us and spread our message. It is, therefore, vital to ensure that when using social media on behalf of Action Kidney Cancer, we all act as ambassadors for the kidney cancer community. As well as risking the privacy and reputation of Action Kidney Cancer community members, careless posts can damage the reputation of the charity and attract adverse publicity.

Individual consultants, contractors and volunteers will have their own personal accounts on various social media platforms; therefore, these guidelines are applicable to Action Kidney Cancer’s platforms and to the personal platforms of individual consultants, contractors, and volunteers when they are communicating about Action Kidney Cancer.

Action Kidney Cancer cannot be held responsible for the content within social media platforms, especially platforms not under our direct control, although we abide by the terms and conditions set out by each social media platform we use.

The following are general guidelines for the use of social media:

Be respectful – each individual consultant, contractor, or volunteer for Action Kidney Cancer is personally responsible for the content they publish online. Posts, comments, and tweets should be polite, respectful, and professional. However, individuals should not have to put up with rude or offensive remarks and should reply in a professional manner.

Contractors, consultants, and volunteers for Action Kidney Cancer should respect their audience and not post content that could be considered offensive, abusive, defamatory, intolerant, or obscene. They should not post content that is unrelated to the topic under discussion, or content that is intended to deliberately provoke others.

Always respect copyright laws and confidentiality – contractors, consultants and volunteers for Action Kidney Cancer should always respect the confidentiality of information relating to the financial performance of the charity and the charity’s plans for future projects. This information must not be published without prior consent to do so from the Action Kidney Cancer management team.

Embargoed information or information protected by a non-disclosure agreement must not be published without prior consent from the originators of the information, or until the information is available in the public arena.

Partners or suppliers must not be referenced on business-related matters without prior approval from said partner/supplier.

Copyrights must always be respect and permission sought from the copyright owner before posting content that was not created or is not owned by Action Kidney Cancer. If in doubt, don’t post it.

Permission from patients, carers and family members must always be sought when posting information about patients, such as patient stories and photographs. Likewise, people and organisations that we are working with must not be named, unless permission has been sought to do so.

Use common sense and remember that what goes online, stays online forever! Before you post, think about whether you would be happy to say what you intend to post to someone directly – if not, don’t post it!

Identify yourself and your role with Action Kidney Cancer if you publish content online about the work of Action Kidney Cancer, but in a personal capacity.

Respond to posts as soon as you can, and try to make it a positive experience by, for example, posting some relevant information, or suggesting someone else they could speak to. Make that person feel that it was worth contacting Action Kidney Cancer.

Listen and act if you see something adverse on social media about Action Kidney Cancer, for example, a complaint about the website not working, or an error in a post made by someone on behalf of Action Kidney Cancer. If you are unable to respond and act yourself, please pass the information on to someone in the Action Kidney Cancer management team who can deal with the issue.

Responding to negative comments – if any negative comments about Action Kidney Cancer are seen on social media (either Action Kidney Cancer’s platforms or other platforms), these should be reported to the Action Kidney Cancer management team to monitor and respond to the comments. By responding thoughtfully, we can help to turn a bad situation into a positive experience and publicly correct misinformation. Posts containing vulgar or defamatory language will be removed from our social media platforms, and negative posts will be left unanswered, especially if a response is likely to incite further action.

Also, the following tips are useful to keep in mind:

  • Stick to what you know
  • Keep up to date with your information and find ways to have conversations with followers/users
  • Follow similar organisations and influential people
  • Social media works best when it is current, active, and responsive
  • Join in the conversations and reply to comments to create an enjoyable and informative environment for our audience. Answer questions that arise, invite others into the conversation and thank people for participating.

Monitoring and review

This policy will be monitored by the Action Kidney Cancer management team biennially to judge its effectiveness and will be updated in accordance with changes in the law as appropriate. We will report to the Board of Trustees on any actions or activities undertaken relating to our social media platforms. Any information provided by consultants, contractors, volunteers, trustees or members of the Action Kidney Cancer community for monitoring purposes will be used only for these purposes, and will be dealt with in accordance with the Data Protection Act 2018.

Policy Updated: June 2024

Next Review: June 2026