I talked at length with Dr Larry Saltzman of LLS who is the decision maker concerning the LLS Community site. He wants to make the Community site work for us and is committed to make changes. This is a report on what is happening, and the changes being made to support LLS patients who rely on the Discussion Board concept.
First, the current Discussion Boards will be shut down. That is a done deal. So our conversation focused on how to make Community work for us. He was frank about not knowing exact limitations on what he can do, but he is equally interested in trying his best. That is fair. I stated a willingness to let him try and see if we like the changes, and see if we can live with the results. I believe that is fair in return. I do not speak for anyone else here, but I am committed to see what he can do, and then decide.
The limiting issue is that LLS does not own the Community platform, so changes can only be made within certain limitations. We discussed those, and what could actually be done. It seems possible to me, but not certain, that LLS Community may be able to support our needs. So here are the changes that Dr Saltzman believes he can make:
Dr Saltzman is going to start with CML and AML sites per my request. I went out on a limb and included the AML folks since their concerns seem to mirror ours. But they can speak for themselves if they do not like the results.
Dr Saltzman is going to pull over to Community as many old posts as is possible, at least a year of old posts, maybe two or three if he can.
There will be a separation of LLS push stuff from the posts. Users can decide on which they want to see. Generally this will de-clutter the site, which will be helpful.
The posts will be made intuitive. For instance, the "What's on your mind" will be replaced by "Start a conversation" He will work with us along the way to add features which make posting more like the old site. This must be an iterative process. He does not know exactly what is possible, but will be working on issues with our inputs. One thing I wanted is the bolding/unbolding for posts showing which have been read by us. Another is a title for each post. These are a priority.
I told him we need internal personal messaging. He thought the Community could do it, but was not certain.
He wants to get us more involved in discussions about our medical history, with privacy provisions, which might lead to data which can be mined to learn more about our diseases. That has been a goal of the Community site which is not yet realized.
Overall I am satisfied that Dr Saltzman wants to support our needs, and is going to try. I also realize he has technology constraints. This will be an iterative process of changes, trying them out, and more inputs. All I can suggest is that we allow him to try to help us out, and we will try to stick with LLS as our posting source. That is what I intend to do. The decision is an individual one, since I speak for no one but myself.
Edited by Trey, 25 January 2018 - 09:02 PM.