Following feedback from our survey we have updated our guidelines for the My Ovacome forum. The entire guidelines are below, but for ease, these are the two main changes:
Previously we asked that you did not name clinicians. We know many of you were unhappy with this and that discussing services is helpful, so we have now changed this so clinicians and services can be named. Please read the guidelines below regarding this and the need to avoid defamation as My Ovacome is a public space. If you want to share private information, please use the private message facility.
Secondly we have changed the 5 strikes policy regarding complaints about forum members behaviour to 3 strikes.
These are the guidelines in full:
Members should not paste personal contact information on the site though may choose to do so in the Messages module. Members should have general regard to their online safety; information on online security is widely available, for example from direct.gov.uk.
The "Messages" module is commonly referred to as private messages or messaging. HealthUnlocked can access all messages sent on the platform and may do so if it considers it important to the safe running of the site for all members.
Content that users post on a HealthUnlocked community is moderated by the patient group and, on occasion, by HealthUnlocked. Moderation takes place after content is posted.
Moderation helps maintain positive, open discussion and content may be edited or removed to ensure that the community is supportive and responsive to the majority. Content may be edited or deleted even where it is not negative, abusive, malicious or deliberately misleading of itself.
Content should never be abusive, malicious or deliberately misleading. If you consider someone else's content is, please report it via the 'Report' option next to each piece of content. Content like this is likely to be edited or removed.
Individual members may not be informed where content is edited or deleted. Moderation is subject to capacity and often relies on individual judgment. Where content is edited or deleted neither the patient group nor HealthUnlocked need to provide a reason for this.
As moderation occurs after posting, neither the patient group nor HealthUnlocked is responsible for any injury or offence that a member may draw from another member's content.
Content should be taken as the views of the individual member and does not represent the views of the patient group or of HealthUnlocked.
Posting content on your HealthUnlocked community is taken as your agreement to post information that is true and correct to the best of your knowledge. You agree to post information that is primarily drawn from your personal experience.
Any content posted on the HealthUnlocked community can be read, used, reproduced and cited by other users of the site. You have the option to delete content you have posted.
Where users post third party information, such as information on new treatments, you are asked to provide references and links wherever relevant and possible.
Your participation in the site should be with respect, honesty and in the spirit of supporting and learning from your fellow users.
You are reminded that the site is not the forum to 'name and shame' or to create negative feedback on identifiable individuals. Negative references to identifiable individuals are likely to be edited or deleted.
Professional health information
Information posted on the site can support but not replace the relationship between you and doctors or other healthcare professionals. Information from the site may inform your discussions and exploration of treatment options with healthcare professionals. You should always consult a healthcare professional if considering changing treatment or medication.
•discredit the person
•causes the regard in which the person is held by others to be lowered
•causes the person to be shunned or avoided
•causes the person to be the subject of hatred, ridicule or contempt
We will not tolerate racism, sexism, homophobia, ageism or other forms of hate-speech or content that could be interpreted as such. Any comments which breach our guidelines will be removed.
•Be supportive and respectful; this is a public space open to a wide range of people who have been affected in some way by ovarian cancer please focus on supportive and sensitive discussions and always be sympathetic to other members’ feelings. It’s your right to disagree with an opinion, but don’t attack the person or people who hold it and please make your point respectfully.
•We ask you to be tolerant and respectful of other members’ beliefs and opinions at all times. We understand that people often have strong feelings about the topics addressed in this community, but personal attacks are never justified.
•Keep focus on topic within each thread.
•Protect your privacy. Comments on the blog are visible to the general public. You shouldn’t post anything here that you wouldn’t say in public. Protect your privacy and don’t give out personal information such as email addresses, telephone numbers or street addresses.
•Consider issues such as libel and defamation when posting about individuals and organisations and do not breach anyone’s privacy rights by sharing their personal information.
•Be hateful. We don't tolerate racism, sexism, homophobia, ageism or other forms of hate-speech or content that could be interpreted as such. Comments that use disparaging language will be removed. Please do not bully, harass or intimidate any user.
•You should not ‘name and shame’ individuals or organisations or as this can leave both you and Ovacome open to prosecution if your comments could be interpreted as libellous. Please do not use our Community for anything unlawful, misleading or malicious.
•Use abusive language- it is unacceptable in this community and you should avoid using swear words or words that others may find offensive aggressively or excessively. We may remove any comments others find offensive or threatening or which are deemed to be escalating a situation. We may also remove an entire thread if a strong disagreement develops.
•No adverts, promotions or spam; this forum is source of support and should not be used to sell or promoted services to our members. We consider any commercial solicitation to be spam, including promoting web addresses, products or services. We will not tolerate any company or individual found to be soliciting personal information from our members for commercial gain. Action will be taken against any company found to be passing themselves off as an individual.
•Use this forum to raise funds. Please do share information about events and support from other charities but promotion of fundraising activity for other organisations is not permitted. Discussion of your experiences of self-funding/crowd funding for treatment is permitted but please do not request funds from users or share any external links regarding this.
Abuse reports: Report it, and then ignore it
As in real life, not everyone on the internet is as nice as you may want them to be. Some nasty individuals enjoy riling people up online by posting inflammatory comments designed to provoke a response (often known as trolling or flaming). The best way to deal with this sort of behaviour is to report it, then ignore it. The same goes if you suspect another member of not being who they say they are; report and ignore. Although it is often difficult, ignoring users who do this is the only way to get rid of them; if they can’t provoke a response, they will leave you alone.
‘3 Strikes and you are out’
If we receive 3 or more abuse reports/ complaints from 3 different people about the same person, that person will be blocked and restricted from using the MyOvacome forum.
Views expressed in this community are purely the views of the members and as such don't constitute professional recommendations or advice or the opinions Ovacome.
Moderation of content takes place during regular business hours Mon- Friday 9- 5pm. Thank you for participating.
If you have any queries or concerns regarding the guidelines do please contact us.
The Ovacome Team