(draft) – all this content now found on HU?
Online Community User guidelines
What is the Pelvic Radiation Disease Association (PRDA) Online Community?
This community is a place for anyone affected by Pelvic Radiation Disease in any way, including partners, family members, friends and supporters. The Pelvic Radiation Disease Association is committed to providing a safe and supportive environment for anyone wishing to use our Online Community so that they can post freely about their condition and be treated with respect and sensitivity. In order to be able to provide this environment we ask that you follow the guidelines below. By registering and posting on our Online Community, you are agreeing to our guidelines.
How is the Online Community moderated?
The PRDA Online Community is reactively moderated. This means that when you post a message on the community, it will appear almost immediately. We don’t review posts before they go live unless you have links attached. In this case the post will need to be reviewed by a moderator before it is published.
The Online Community is moderated and reviewed regularly and we reserve the right to remove or edit posts, or implement necessary measures in order to ensure that our online community stays safe and supportive. Please see below for a list of rules for posting.
We always want to see healthy discussion / debate and removing a post is a last resort in preventing things getting out of hand, whatever the reason. If we do remove a post, the author of that post may be contacted by a member of the moderating team for a clear explanation as to the reasons behind the decision.
By moderating our Online Community in this way, it allows us to continue to offer support 24 hours a day.
Who moderates the Online Community?
Apart from the Patient Engagement Manager, other moderators are volunteers who have given up their own time to ensure the Online Community is a safe place to go to for support and information.
We also ask you, as members of our online community, to contact us immediately if you find anything on the Online Community that is offensive or inappropriate by either emailing support@prda.org.uk or by sending a private message to one of the moderator team listed at the top of the Online Community .
Your username, biography and profile picture
You must select a username that is not offensive or inappropriate for our community. We reserve the right to refuse or amend an inappropriate username. We would also ask you use an appropriate image for your profile (no nudity or offensive images please).
For your online protection, we ask that you do not use your full name as your username or include personal information such as your email address, web address, telephone number or postal address in your signature / biography. If you have a public social media link you wish to share (such as a Twitter handle, Instagram account or blog, you are welcome to include this.
If you have a complaint or grievance with a Hospital/practice or health professional, please do not name the hospital or individual involved. Moderators may delete posts which are deemed to have inflammatory comments relating to named individuals or healthcare settings.
Be Supportive, Respectful and Kind
We ask you to be respectful of others beliefs and opinions at all times. Always be aware of the thoughts and feelings of others when you are posting, what might be acceptable to you could offend someone else. Members of our online community who use the Online Community may be going through something very difficult and your support is important to them. By following the steps below, you will be making a positive contribution to the Online Community and its community.
1. Take the time to read your posts and messages before you submit them. Posting on an Online Community is not the same as having a conversation face to face. Please be aware that a written comment might not come across in the way that you had intended and could unintentionally cause offence.
2. Please use clear and understandable language – it is very important that those who wish to support you have a clear idea of what your problems and needs are.
3. Please be patient there are users of all ages and abilities using the Online Community .
4. The Online Community is public and can be read by many different people; from people newly diagnosed with cancer, people currently undergoing radiotherapy treatment, the media, MPs, and potential funders of the charity and you need to ensure your message is appropriate for anyone to read.
If you do see something that offends you please contact the moderator team straight away either by private message or emailing support@prda.org.uk rather than try to handle the situation yourself. The role of the moderator team is to resolve these sorts of issues so that you don’t have to. Under no circumstances should a Online Community user respond to an offensive remark made by another Online Community user. Provoking a troublemaker or nuisance takes control of the situation away from the Moderators and makes their role more difficult.
Any member of the community found to be sending offensive or bullying private messages to another member will have their account deactivated immediately.
Posting and Content
Offensive / abusive language
We will not tolerate any form of threatening, harassing, discriminatory, offensive or unlawful behaviour.
Please avoid online “SHOUTING”. As a general rule in online communities, typing in all capital letters usually means that you are shouting. This can offend others especially if you are discussing a sensitive topic. We would ask that you try not to post all in capitals but use caps lock for a special occasion, for example “HOORAY, SOME GOOD NEWS!!”
Keep it legal
You may not post any defamatory or illegal material of any nature. This includes text, graphics, video, programs or audio. Posting a message with the intention of committing an illegal act is strictly prohibited.
Only post materials to which you have the copyright or other permission to distribute electronically. You may not violate, plagiarise or infringe on the rights of third parties including copyright, trademark, trade secret, privacy, personal, publicity, or proprietary rights.
No Adverts, Promotion or Spam
Commercial advertising is not permitted, this includes links within posts and links in signatures. We do not tolerate spam of any kind and any posts that are considered spam will be removed immediately.
From time to time it may be appropriate to signpost members to alternative means of support, for example someone experiencing mental health difficulties may benefit from the additional support of mental health support organisations, and posting such links would not be considered as spam or advertising. If you are unsure, please contact the moderator team.
Please be aware that our Online Community doesn’t recognise emoticons/emojis so please refrain from using them as it might prevent your message from being posted.
Press, Media and Case Studies, Researchers
If you are looking for case studies for either media or research purposes please do not post on the PRDA Online Community . The purpose of the Online Community is for support amongst people affected by Pelvic Radiation Disease. If you wish to ask for case studies or help with research, please contact the PRDA office directly on 0113 278 5405 or by emailing info@prda.org.uk.
How to make sure your post is read on the Online Community
By posting in the most relevant category and clearly labelling your post it will enable other members of the community to find, read and respond to your posts. It will also allow greater choice over what people wish to read. Equally, if a topics cover side effects that you do not experience you may find it distressing to read, it is important to remember that not all those treated with pelvic radiotherapy will experience PRD and everyone experiences PRD differently. For example, not all people with PRD experience bowel symptoms, those who are going through a hard time with bladder symptoms may get distressed reading details about bowel issues. The Online Community categories are there to also assist in this choice.
Some examples of labelling posts;
a. If you are discussing something specific such as diet, exercise, tests, surgery, etc. include this in the title.
b. If you are posting good news please include what it is about, such as ‘new job’, ‘getting married’, etc.
c. If you are feeling low or in pain then put ‘feeling low’, or ‘bad day at work’, ‘pain really bad’ in the title.
Failure to comply with the Online Community Guidelines
Failing to adhere to our guidelines will result in the post being removed, and the Online Community user being formally warned by email or private message. This warning may include suspending the account or placing the account under moderation (where posts will be reviewed before being published).
If, after this warning, the Online Community user continues to breach the guidelines their account will be deactivated and they will be banned from the Online Community. The decision of the moderators is final.
Data Protection
Pelvic Radiation Disease Association will not publish or provide your email address to anyone. See also our Privacy Policy.
Child Protection
For the protection and safety of children, this community does not support members under 16 years of age.
Please remember
The opinions expressed by this online community are purely the views of its members and do not reflect the views and opinions of the Pelvic Radiation Disease Association.
The Pelvic Radiation Disease Association does not recommend or endorse any drugs, surgery or treatments of any kind, but seeks to provide support and information on the current options of treatment available.
The Pelvic Radiation Disease Association reserves the right to update and change our Online Community guidelines at any time. We also reserve the right to deactivate or ban Online Community users at any time if they are believed to be causing distress to other Online Community users. If you have any questions about these guidelines, contact us at support@prda.org.uk and we’ll do all we can to help.
Modified 14th June 2021