PHA - Message Board Announcement 022608

February 26, 2008

Dear Message Board participants,

With great reluctance, we are posting this entry on your message board. And we do mean “your” message board. PHA’s philosophy with regard to all of our online communities is to have as little staff participation as possible. We want these communities to be yours and for participants to freely share about what life is like with PH and to support each other as much as possible.

Topics of concern have recently come to our attention, and we feel obligated to weigh in in order to preserve the value of these communities. The issues that have been raised focus on the posting of non-PH related subjects and the poor treatment of some message board participants by others.

As many of you know, in February PHA conducted an extensive survey of our constituents. At the end of the survey, we asked respondents to share anything they wished. Compared to every other subject, the online communities received the most comments. Below we share some of the representative comments with you because they come from your peers and not from PHA staff. We hope all message board participants will take these comments to heart. While the vast majority of board participants are supportive, considerate and on-topic, we think the comments below – in participants’ own words – speak to the impact of acting otherwise.

To help lower the stress in one’s life, the message board should be monitored more so when people are being unkind to each other, it can be stopped before it gets out of hand.

I would like to see PHA take a stand on the discussion boards. I get tired of reading the many off-topic subjects and the continuing bickering that erupts almost every day. I find it depressing. It’s the same people every time so I think it would be easy to monitor.
My favorite part of your website was the message board. After recent discussions on the board I am now afraid to post. Arguments and unkind words make me very uncomfortable. But I do still read the posts in hope of learning something new from regular people who deal with PH on a daily basis.

Your message boards are a bit difficult to participate in because people already know each other and aren’t so welcoming to newbies.
The online chats should be monitored for “know-it-all” and strongly opinionated people. These opinions have been so strong as to deter others from sharing their opinion or experience….

We believe the following comments from online community participants address the value that these communities can provide. These comments reflect why our online communities exist and what they can offer when everyone is treated with respect.

Really appreciate that this site exists. I would probably have lost my mind last year when I was diagnosed if I had not found this site. Between the information posted and the support I received from the chats and on the message board, it made understanding this disease a bit easier.
I appreciate the ability to email others in the same boat to ask questions about what I was facing as well as receive recommendations for who to see. I am getting great care because of it.

Given the extensive feedback we’ve gotten from you about what you want the message boards to be, PHA will consider removing messages or message threads you bring to our attention that are on non-PH related topics or that involve the poor treatment of other message board participants. We do not read the boards on a regular basis and will only act on messages that board participants bring to our attention. Address your concerns to web@PHAssociation.org with the direct URL/link of the message in question.

Thank you for taking the time to consider these comments and for participating in our online communities as they were intended – a virtual home for support and exchange of information that is vital to those with PH.

Yours in hope,
Diane

Diane Greenhalgh
Director of Internet & IT Services
Pulmonary Hypertension Association
web@PHAssociation.org
301-565-3004 x759