I like how the site has changed. I have sort of been advocating for the need for something close to this for awhile, at my place of work (A VA hospital). I shared my idea with a couple of the members of leadership, and some were thinking that it seemed like a good idea. Sadly, I doubt it would be able to be started at the place where I work, the doctor who is head of the Polytrauma program indicated that I don't have the qualifications for running the support group, or something along those lines. My interest is in enabling some support group through internet based technologies, similar to this.
I'm not particularly interested in running the support group, but I think that for discharged patients, something like this could be really important.
There is probably no greater supporter for your idea than you.
One of the good things about getting TBI patients interested in using social media is that they would be more likely to have positive perceptions of surroundings. A digital camera and a computer are relatively minor expenses, which open up new worlds for patients.
Photography is probably therapeutic in some ways.
Getting patients interested in what is outside is probably a good thing. Helping them to become better walkers is important for those who have difficulty.
If your VA hospital can't get a group going, Marty, just send TBI patients here. We would be happy to have them join us.
Yeah, I'm not entirely sure how that'll work. Part of the goals behind the TBI program is to provide team centered, focused care. I'm not sure what the numbers of patients who get discharged, and go back home to live with parents, or others, and who may have other isolation problems. If they are able to find this place, good. There could be some who have more difficulty than others. There could be some who require more assistance with technology. It's a good idea. I think this site provides some of what I would want to have included in my ideal mechanism for communication and reachback. Possibly, there might also need to be a way where people in states of distress could reach out, in addition to the suicide prevention help line, or whatever. And a tighter control on confidentiality, which I guess I could limit the exposure that articles recieve by limiting exposure to just my friends.
It seems like the idea should happen. I don't think the org chart will shape out how I'd like to see, but whatever. Having this place run by volunteers, while good on some levels might not be as good if other organizations were to get involved.
Even just getting model systems for TBI, to have some of that data would be cool. I doubt they have a list of current e-mail addresses associated with TBI patients. DVBIC might not have lists of e-mail adresses. People need to opt in and decide for themselves that bensfriends and rare diseases communities sounds like a good thing.
You can always put up a flyer about BF at the hospital. There is a printable flyer under the "Welcome" tab at the top of the page.
I was pleased that http://paper.li/JodiHouse/1329062805 mentioned the discussions going on here. For part of this, it might be a bit much of inside baseball talk, about privacy concerns, and too much self-disclosure. But Hospitals, with rules to follow need to follow those rules, otherwise, laws can impose financial penalties. I think no hospital should want to lose accreditation over violations. I have no idea if hospitals do for those reasons, or if there are usually other bigger more substantial problems which might cause accreditation loss.
A lot of doctors have recommended to patients that they join one of our networks. I don't think it conveys any liability. And, of course, no one needs to disclose their real name to sign up. We encourage aliases.