Moderator: America Paredes
September 24, 2009
3:00 pm CT
Coordinator: Welcome. At this time all participants are in a listen-only mode. During the question-and-answer session you can ask a question by pressing star 1 on your phone. Today’s conference is being recorded. If you have any objections, you may disconnect at this time.
Now, I turn the meeting over to Miss America Paredes.
America Paredes: Thank you, everyone, and welcome to this virtual training teleconference, IT Strategies to Promote Social Inclusion. It is sponsored by the SAMHSA Resource Center to Promote Acceptance, Dignity and Social Inclusion Associated with Mental Health, which is also known as the SAMHSA ADS Center. My name is America Paredes and I will be moderating the teleconference today.
If you have not been able to access the presentation files that will be used today with the Microsoft Live Meeting software, please access our website at http://www.promoteacceptance.samhsa.gov. On the left-hand side of the screen, you will locate the Featured Pages section, and the first link will give you access to the presentation files. You will need to scroll to the bottom of the screen to locate the presentation.
If you would like to reach us, you will find our contact information listed on slide number 2. Our presentation today will take place during the first hour and will be followed by a 30-minute question-and-answer session. At the end of the speaker presentations, you may submit a question by pressing star 1 on your telephone keypad.
You will enter a queue and be allowed to ask a question in the order in which it was received. On hearing the conference operator announce your name, please proceed with your questions. After you’ve asked your question your line will be muted. The presenters will then have the opportunity to respond. These instructions are repeated on slide number 4.
If we do not get to your question today, please feel free to email the ADS Center and ask follow-up questions. We can put you in touch with the presenters as well.
Within 24 hours of this teleconference, you will receive an email request to participate in a short anonymous online survey about today’s training. Survey results will be used to determine what resources and topic areas need to be addressed by future training events. This survey will take approximately 5 minutes to complete.
Before we proceed with our presentation, please let me say that the views expressed in this training event do not necessarily represent the views, policies, and positions for the Center for Mental Health Services, the Substance Abuse and Mental Health Services Administration, or the U.S. Department of Health and Human Services.
Our training today will be conducted by three presenters. Our first presenter will be Rowena Tse. Ms. Tse is a campaign director at the Advertising Council. In this position, she manages the day-to-day development of several national public service advertising campaigns for private, nonprofit, and Federal Government agency sponsors, including SAMHSA’s Campaign for Mental Health Recovery.
Prior to joining the Ad Council in April 2008, Ms. Tse spent 7 years in account management at advertising agencies Draft and Ogilvy and Mather in New York City, working primarily on issue-related campaigns. Her past experience includes developing advertising for the National Youth Anti-Drug Media Campaign, U.S. 2010 Census, and the National Center on Addiction and Substance Abuse at Columbia University.
Ms. Tse holds a bachelor’s in marketing and information systems from New York University, and is currently pursuing an M.S. in strategic communications, with a concentration in nonprofit communications, at Columbia University.
A native of Hong Kong, Ms. Tse currently resides in New York City.
Our next presentation will be from Mr. Keith Mahar, who is a mental health advocate, activist, and professional social worker in Canberra, Australia. Keith was diagnosed with bipolar disorder in 1996 and has been active as a mental health advocate in local, national, and international initiatives. He made a presentation on his own recovery at the World Psychiatric Association International Congress in 2007 and is a creator of the http://mentalympians.tv website, described by the Mental Health Council of Australia as a world first website and a creative approach to promoting awareness of recovery.
Keith was formerly a corporate broadcasting manager in Canada. He is also a precedent-setting public interest litigant, which is Mahar v. Rogers Cablesystems Ltd., whose activism in the broadcasting sector has resulted in Canadian parliamentary debate.
A final presentation will be from Cindy Specht. As Vice President of Products & Programs at the Depression and Bipolar Support Alliance, Ms. Specht leads the development of on- and offline educational programs, events, and communications. Cindy has an extensive background in program development, consulting, and marketing with a particular emphasis in technology integration.
We will now move forward with our presentation, and we will hear from Ms. Rowena Tse.
Rowena Tse: Thanks, America. Hey, everybody. Thanks so much for joining us today. I’m really glad to be with you all here virtually.
As America said, my name is Rowena Tse and I’m the Campaign Director at the Ad Council. And day-to-day my role here at the Ad Council is really to manage the What a Different a Friend Makes communication campaign for SAMHSA’s Campaign for Mental Health Recovery.
And today, I’ll share with you some of the new work that we’ve been doing on the campaign. But first I wanted to talk about the Internet, and specifically how people are using the Internet to connect with others, especially on health issues. And then we’re going to talk about how we can leverage the Internet and these tools to promote social inclusion and support recovery.
So first, what are online recovery tools? They really take on many different forms. We could be talking about online forums and message boards, chat rooms, blogs, wikis, which are websites that work similarly to Wikipedia. So it’s a space where you can collaborate and edit and create content. It could also take on forms like podcasting, picture sharing, song sharing, and video sharing, and then of course there are social networking sites that everybody is pretty familiar with, like Facebook and MySpace and Twitter.
So we’ve got all these tools. And why are they important? First off, they support this human need for interaction during recovery. And what’s great about communicating online is that there are no geographical barriers. So no matter where you live, if you live alone, if you live with others, you’re really able to have conversations with people living in very different parts of the world. And by talking and sharing experiences with one another, you’re able to prevent the sense of isolation that can happen and strengthen recovery.
And also, when you’re posting something on a message board or writing a blog or making a podcast, you’re creating something. So you’re becoming content producers instead of content consumers. And that gives people in recovery a sense of accomplishment and empowerment.
So just how many people are online? This is some data that I pulled from Pew. There are a lot of different statistics on this, but we’ll stick with Pew for this conversation. This is a study that was released in January of this year, and it showed that about three-quarters of adults go online.
And this chart shows the different type of activities that they do online. It’s broken out by generation. So obviously teens and Generation Ys, which are the 18 to 32 years old, they have the highest rates of online activities. But overall, if you look at the red dots, all the way on the right-hand side you’ll see that about 35 percent of all adults use social networking sites.
And when we asked them, what do they do when they’re on these sites, 89 percent say that they used it to stay in touch with friends. Okay, so we know that they’re online, they’re talking with friends. What else are they doing?
Well they’re also looking for health information. A good chunk of American adults—we’re looking at 61 percent—they go online to look for health information. Where else do they go? Number one, 86 percent talk to a health professional like a doctor. Sixty-eight percent ask a friend or a family member. So really after you talk to your doctor, you talk to your friends and family, the next step is to go online.
And when we’re looking specifically at data in the mental health category, we see that about 28 percent of online adults are seeking mental health information online. So it’s a little less than a third, but it is a significant increase from 2006, especially since more adults are now online. So in addition to looking for information, people are also looking to talk to each other with similar experiences online, to share stories and to ask questions.
And when we think about social networking, a lot of people automatically go to the big guys, the Facebook and the Twitter. But there are actually a lot of different health-specific online communities out there. And here are just a quick sample of what’s available. And most of these are categorized by health conditions like heart disease, Alzheimer’s, and many of them also have a section on mental health.
Knowing what we know, that people are online, that they’re talking to their friends online, that they’re looking for health information online and really wanting to talk to each other about it online, the What a Difference campaign wanted to give people a forum to start that conversation, specifically about mental health.
So before I go into that, I wanted to just give a quick background on our campaign for those who are not as familiar with us. The What a Difference campaign started in 2006. We wanted to target young adults because we know that the prevalence of serious mental health conditions is really highest among this group, yet they are the least likely to seek help.
And since we know that friendship and support is so important to those in recovery, we have the opportunity to really impact the lives of young adult consumers by talking to their friends to provide that critical support that’s needed in recovery.
So our target for the campaign for Phase 1 was 18- to 25-year-olds, friends of someone who’s living with a mental health problem. And the key message is really to get them to step up and be the first step in their friend’s recovery, because we all know that recovery happens in a society of acceptance.
We created a website that was whatadifference.samhsa.gov1 with lots of information on mental health, and also ways to talk to a friend and ways to support a friend who’s in recovery. And our call to action is to drive people to that website.
So on the right here, just a couple of examples of the work that we did in Phase 1. It’s pretty traditional media, so we did television ads, magazine and newspaper ads, outdoor billboards, we did some web banners, we did a brochure that’s available if you all want to take a look, on the website, which is whatadifference.samhsa.gov.
So all of these materials launched in December of 2006, and a lot of it is currently still in market. And since the campaign has launched—it’s about 2-plus years—we’ve seen really great numbers. We’ve seen a significant increase in the percentages of the people who say that they have talked about mental health with their friends and family or visited a website to find out more information.
So then we know that people are really engaged in this issue. So for Phase 2 we wanted to go online, because we know that’s where young adults are. And we wanted to leverage this friendship platform that we have developed with Phase 1 and take it online to develop a robust interactive campaign that would create discussion, to generate support, and to promote friendship.
So let’s go back to my favorite chart from Pew. But this time I want us to look at the second column, which is where the red box is, the Generation Y, 18-to-32 age group. You can see that they’re very active online—67 percent of those people are on social networking sites. And if you drill down further in that target group to just 18- to 25-year-olds, which are really the core targets for our campaign, that number goes up even higher. We’ve got 75 percent of folks that are using social networking sites.
They’re also the group that’s most likely to go online to look for mental health information. You remembered a couple of slides ago, we saw that 28 percent of all adults went online to look for mental health info. Among 18- to 29-year-olds, we’re at 33 percent. They also had the largest increase from 2002.
So as we go into Phase 2 of our campaign, we really wanted to engage this group, knowing all the statistics that we know about them, their Internet activities, what they’re doing online. So we developed all of these things in the top box here. So we have web videos, we did more banner ads, we’ve developed a social media outreach plan.
We’ve developed campaign profiles for What a Difference on sites like Facebook and other networking sites like SodaHead in order to really engage this target online. But for today’s discussion, I want to share with you our new online discussion forum that we’ve developed. And I’ll give you a quick sneak peak at our website redesign.
Here is a screenshot of the homepage of our new discussion forum. It’s called Together. And it’s an online community. It’s right off of WhatADifference.org, and it’s for friends of those living with mental health problems. And we want this forum to facilitate dialogue around the issue and allow folks to share their experience and information, so really a friend helping another friend.
So on this homepage, you will see discussion topics. The top one is always going to be the National Suicide Prevention Lifeline. It’s a sticky post so it always remains on top and is always visible.
Then we have a section on general discussions about mental health. We have discussions on support. We have discussions on support. We have discussion on recovery, and then a Help and FAQ section.
So you can either register. Type the user name and then you can start posting. Or if you don’t want to log in, you can also log in as a guest.
So this is what it looks like once you’ve logged in. It’s the same folders that you saw before. And I just want to point out that this forum is not yet live. We’re still at the final, final stages of approval. But we did circulate a test link out to our entire organization here at the Ad Council.
We sent it over to SAMHSA. We sent it over to the development agency that actually helped us design this forum. And we sent it out to friends and family and asked them to get the conversation going.
And so far we have about 80 registered users. And there’s some great discussion already going on on the boards, and this is not yet available to the public.
So I wanted to spend a little bit of time just taking you through a couple of the postings that I found, just going through the forum, that were really good examples of what we expect to get in this forum.
So this top one here was found in the support section. And this person’s talking about how sometimes it’s not about the big things that you do to help a friend, but really the little things that make a big difference.
So I think she talks about going to movies, dropping by for a cup of coffee, everything makes a difference. And then she opened up the discussion and say what are some little things that you’ve done to show your support. So there are definitely a lot of questions being posed, and then others can reply to this post.
The one in the middle was also in the support section, and that’s really more of a personal story about sticking by his friend who has a bipolar disorder, even though he wasn’t sure that he wanted to get left alone, but he knows that his presence made a difference. So folks can definitely feel free to share personal stories, and you’ll see that he’s signing as a guest, so all posts are anonymous.
Then the last post here that I pulled out is really about offering support. And this was actually a reply to a longer post about the challenges of being there for a friend and offering support. And you can read it, but she’s basically saying, I know it’s hard. It’s not the easiest thing in the world, but you have to keep trying because even if he doesn’t return your phone calls, trust me, he’s listening to your voice mail.
So really just offering your support to the friend—this is not even offering support for someone in recovery—but our mantra is, every friend needs a friend.
So you might be looking at this and saying, where do I sign up. The site is fully functional. We are just as I said, in the final stages of approval and really looking for this to go live in the fall of this year, so really in a couple of weeks.
And here you’ll see a quick snapshot of our redesigned homepage for WhatADifference.org. And we do plan to launch this simultaneously with the forum. And there is a prominent link as you can see, right on the homepage, that will drive you directly to the forum. But I put in the direct link here, just for your reference to the site. Again, the link is not working yet. Give us a few weeks and we’ll get that up and running.
And then for Facebook and SodaHead, those are two profiles that we have developed for the campaign. Again, since our forum isn’t up and running yet these are still works in progress, but we’ll be fully up when the forum launches.
So that’s it for me. Thank you so much, and please let me know if you have any questions at the end.
America Paredes: Thank you, Rowena. We will now proceed with our second presentation from Mr. Mahar. And his presentation begins on slide number 23.
Keith Mahar: Thank you very much, America. I can’t change the slide, so America, if you could just follow me when I change slides in my oral?
America Paredes: Definitely.
Keith Mahar: That’d be great. I’m in Australia right now at about 6:20 a.m. so on Friday. So I’m a little bit ahead of the time for you guys. Thanks so much for participating.
I just want to talk briefly about a community development initiative that I’m involved with called Mentalympians. On the second slide is my personal story of recovery.
I’m the third generation in my family with bipolar disorder, diagnosed with bipolar disorder. And in 2006 there’s actually an American living in Australia that did a short film called The Naked Advocate, which is available on YouTube that you can have a look at if you want. It’s about 9 minutes, which goes through some of my background.
Essentially I was in the broadcasting sector when it became quite unwell, and with symptoms of psychosis I left the industry and tried to reform the Canadian Broadcasting System. The Naked Advocate is sort of quite indicative that it didn’t really end up the way it wanted it to. I ended up immigrating to Australia in 2001.
And I guess for those periods of time I had quite a few skills and education, but I really found that the whole self-stigma and stigma of mental illness really sort of kept me down and prevented me from recovering.
And it wasn’t until I got involved with a small group here called Mental Illness Education ACT—it’s a group that goes out to high schools and talks to high school kids about what’s it like from a lived experience of a consumer of care, that I really sort of started getting an identity as a mental health advocate and rebuilding that loss of self-esteem and self-confidence that I experienced in Canada.
And so from that I got more and more involved in the sector, and I ended up going back to university to become a social worker. And from that, my social work university let me do a second placement on an idea I had for building a community channel online.
Now, the idea of sort of a community channel online, in Canada we have community channels for cable TV companies. It covers local content that’s not covered by anyone else.
And the idea was that there’s so much content out there on people with mental health issues and research and different innovations that are coming up, but really somewhere to sort of galvanize it and pull it together in one area, as well as sort of establishing almost a 21st-century peer support.
So if you want to go to level, slide number 3, Mentalympians.tv, the whole concept as a community development initiative, can fundamentally change over the course of time. So this is just, the concept was launched, the international initiative for mental health leadership, this past March.
And I just put together an international advisory group of 12 people, and we’re relaunching the website and the initiative on World Mental Health Day.
So this is just—things can change over time with community development, because you can’t really put a perfect business plan together like you would for developing a commercial enterprise. But the idea is basically to be able to connect networks of organizations, consumer organizations, who ultimately run and control at their own community channel.
So it’s a sort of voice for the community by the community. And implied in that, implicit in that, is that it demonstrates recovery because the people who will be running it and producing it and operating it are people with mental health problems. So it really, it shows recovery just by virtue of going onto the site.
The first slide, in terms of posting their own stories, the idea is not to emulate something like YouTube, which has its place, but the idea is to have the high-end very good-quality material so people can be proud of the community and they can actually see what we’re capable of doing. So there would be sort of a filtering process along that way, so it’s not just anyone that wants to put material up on the site.
And I guess what I’d like to do is I’d like to actually use cyberspace to get more face-to-face contact. Because the Internet is absolutely ideal for many, many things on a broad level, but I don’t think anything actually really replaces that face-to-face connection with a friend or a peer and services in the community.
So it might sort of start out with, you can have a global page. But then you see what’s going on around the world and then you go to your country and then you can actually hit another tab and go into your community. So just what services are available, what’s going on there. So really sort of taking the global to the local level is one way that this could work out.
And it has a lot of potential in terms of on an individual community and also social levels in terms of creating the right conditions to accelerate that social change and reduce stigma. And you can have social campaigns on there about stigma in one country. People could get involved anywhere in the world.
You could have a leadership forum where the networks are involved in the program. You could have a secure forum to talk about different topics that come up. So it could be seclusion, it could be research into different pharmaceutical medications. It could be anything that has sort of a key interest, but to get more and more people collaborating and talking at the leadership level and also at the community level.
So I guess the next slide—and these are just very basic slides with some quotes that people have given back, feedback on the show, on the concept. And I was involved in some media and ongoing media issues in Canada, and I had the chance to post this idea to Noam Chomsky before it was actually launched.
I just thought it was really—I was quite flattered that Noam Chomsky would think it was a good idea. And obviously other people in the community have come forward and said they do also think it’s a good idea.
It’s available, if you want to go to Mentalympians.tv, it’s live right now. As I said, it’s going through a change, a relaunch for World Mental Health Day. The graphics are changing. There’s going to be some changes in content as well as—the major thing is announcing the advisory board that’s coming online.
I think that’s about all. Really, as I said, it could go through a huge change in sort of direction. It could even just end up being a 24-hour radio show that’s available online as opposed to a video and text.
But I think it’s getting people to talk about what’s possible and collaborating on what to do next. And I think that’s about it.
America Paredes: Thank you, Keith. Maybe some individuals will have some more questions for you at the end in regards to what you plan to do in the future.
Keith Mahan: Sure.
America Paredes: We’ll go ahead and move forward with Cindy.
Cindy Specht: Well, thank you very much, America. And DBSA would like to extend its thanks to SAMHSA as well as CMHS for allowing us to be able to share some of these tools. Web-based technology has been a particular passion for our organization for quite some time. DBSA, as many of you might be aware, is the Nation’s leading organization, patient-led organization, focusing on depression and bipolar disorder.
In 2006 when I joined we did a major relaunch of our major primary website, DBSAlliance.org and since then have been trying to integrate very diligently opportunities for individuals to be able to connect to resources and each other online. And we are in 2 minutes actually, spend a couple of minutes on one of our most recent initiatives, which is FacingUs.org, which is our online community network.
And before I do that I do want to take a moment and say that I have had the opportunity to speak with Keith a while back. And I’m very pleased to see that the Mentalympians are going forward and that this is something that will be accessible. And we can start to communicate not only across the Nation but across the world. So congratulations and thank you very much.
So moving on, as I had said, web-based integration and technology is very important to DBSA. We use a host of online tools to help individuals broaden their understanding of mood disorders, connect through the Internet, find inspiration and hope, and become active in their treatment plan.
And some of our newer tools are now helping individuals normally track their daily routine, to also become involved in helping others on their path to wellness.
We do integrate a multitude of social media outlets. We have a pretty strong presence on Facebook that we recently launched as well as utilizing YouTube, Viddler. It’s not mentioned here, but we do have Meetup groups.
We do have very, very active DBSA discussion boards, and those focus on areas that are topic centered, such as depression or bipolar disorder, anxiety, family, support, et cetera. We also operate online support groups, and those vary from our discussion boards in the fact that they are actually facilitated support group meetings. So they are run pretty identical to our live support group meetings and they are again operated through trained facilitators.
We do utilize a chat-based system but we do utilize that more from an event-based perspective where we would open that up to things like author chats and/or we would open that up when we do trainings with our chapters. And we also participate in some more social and media interconnection through the DoGood Channel, which is a portal for finding events, support groups, volunteer and donation opportunities through major media outlets throughout the Nation.
We also have integrated a multitude of interactive tools within DBSAlliance.org to help individuals become more active and involved in their recovery, and again help others become more involved in their recovery as well.
So we have on DBSAlliance.org we do have an opportunity for individuals to share their story. I’m going to run into some of these a little bit more detailed, so I’m going to go through these quite quickly. We have Find a Pro, which is for individuals looking to connect to recommended professionals and facilities. We have a Legislative Action Center. We have a partnership we’ve developed with CareCentral for HealthCentral for our CareCentral pages.
We have the current Survey Center. We’ll be relaunching it this fall so that consumers’ voices can be heard and they can continue to make an impact in addition to our advocacy efforts. And we also offer a variety of multimedia resources, such as podcasts.
We have two essentially training components. We have our Training Center where we offer live webinar courses as well as our archive webinar courses. And in our DBSA Recovery Education Center, we offer event videos, presentations, as well as some courses for consumers, one of them being Living Successfully.
This is just a couple of screenshots of DBSA’s Find a Pro, where individuals can go in, they can find a professional within their area, they can find a facility. And again, the difference here is that again these are peer centers. So these are recommendations from peers for professionals or facilities within their areas. Again, DBSA does not make a recommendation on these. This is again peer-recommended resources.
We’re relaunched this within the last year so that it’s easier for people to make a recommendation as well, and we would encourage anyone out there to be able to certainly to do that.
We need to be able to have individuals have trusted resources. So we’ve incorporated things such as Google Maps to be able to help make that easier for people that are interested in sharing with others a highly qualified professional and/or facility.
This is a screen capture of our Legislative Action Center. Many of you are probably quite familiar with resources such as this. We preload in the letters to the media and/or legislators with a simply entry of a person’s ZIP code. Their legislators are brought up and the information is put in front of them regarding the issue at hand. And within a couple of clicks they can send that letter out. We had over 40,000 letters that were activated last year and have received definite feedback that’s made a difference.
CareCentral are just crisis management pages where people can if they’re in crisis or in a hospital, reach out to be able to get support from others and connect with others as well as update individuals on their recovery.
Here’s a quick snapshot of Share Your Story, which is again on DBSAlliance.org, and is in a written format at this point.
In 2007 DBSA did launch Facing Us. It’s a national campaign to highlight the face of bipolar disorder and to provide tools to those individuals facing the challenge of living with these illnesses. So this FacingUs.org in the clubhouse is where we house the majority of those tools.
So I’m going to go through all of these in greater detail, but you can see when you enter the clubhouse itself you’ll see a house appears, the clubhouse itself. And if you navigate through different areas of the site, you’ll scroll over them and different tools will be accessible to individuals . . .
Probably the best way for individuals to become oriented to Facing Us is to actually take the tour. There’s an orange sun that’s located on the main page. If you click on that, there’s an auditory tour that will take you through each of the different rooms and give you a snapshot view of what each of those are.
One of the first tools is the journal. So individuals can create their personal online journals. One thing I should point out is that because these are all personalized tools, the great majority of the rooms within the clubhouse do require registration; however, they require very, very minimal information, just literally your email and your password that you create yourself. That way, when you create your own personal journal, the next time you come back all that information is saved underneath your log-in.
You can create your own personal journal anyway you’d like, whether or not that’s for a collection of your own poems, whether or not that’s a gratitude journal—however way you might like to do that. You can print it via date range and then you can select a cover choice. There’s three different cover choices that you can select so that you can then print and download that into a PDF format.
We also have on here a wellness plan. And this is really meant to be a help, change the focus from symptom management into being able to have consumer-oriented goals direct their interaction with their doctors.
So we have different areas for you to be able to kind of step through. You can create wellness goals, a daily self-care plan, define your support network, warning signs, triggers, booster plan, and self-management.
We also provide as you’re going through here some tools to help you so there is an interactive presentation with audio that would pop up a slide show if you’re interested in what are wellness goals and what might be some examples, et cetera, et cetera.
That tool is meant to be used to be able to help you think through your own recovery plan and be able to share that with your clinician so that you can work in partnership towards your overall main goals, which include many things, obviously beyond system management.
We also have a wellness book, and it’s actually two different components. If you notice in the upper right-hand corner of the brown navigation on the right-hand side Facing Us clubhouse, you’ll see tips. And these are going to rotate through as you go from page to page.
These are community-shared tips. So individuals that are members have gone on, they’ve created tips for themselves and perhaps then decided that they wanted to share those tips with other members of the community—again, reaching out, being able to share.
And so then they post that to the community section of the wellness tip area. And then you could create books where you could have your own personal tips that you don’t share with anybody else, and those can be included. And then you can create a book that also includes your favorites from the community tips as well.
One nice feature that goes beyond just being able to create these tip books for yourself would be that you can also create a wellness book for a friend. So it’s a really no-cost way to be able to share a really great outreach of support to individuals that are maybe looking for a little bit of help at that moment. Those tips vary from anything from how to manage depression, anxiety, sleep, to inspirational quotes, music selections, et cetera.
We also have a media room. And in the media room there is a host of information. It’s really pretty in depth. Underneath the Look sections you’re going to see contest winners. That one when we launched in 2007. We had a pretty in-depth contest where individuals were able to submit their stories.
It was about facing depression, facing bipolar disorder, facing relationships, and facing recovery. So we had a number of winners that are in there, and their videos are also highlighted within that arena.
Coincidentally, we are in the midst right now of a new video contest, so please visit Facing Us and/or DBSAlliance.org. And if you’re interested in participating in that we would welcome that.
We also have an opportunity to post public messages, personal stories of recovery, peer art that was again submitted through a contest in 2007, as well as yoga, some entertainment clips that feature for instance, the comedy clips from our comedy show that we do each year at our national conference, video casts, as well as underneath our Listen section.
Then you have meditation, you have a tour again, some audio casts for recovery-oriented messages, as well as the Facing Us radio, which is something that you can use and play throughout the day, wherever you’d want to. And it features the 16 contest finalists from our 2008 peer-centered music contest. So it’s just some relief fun, great release.
I kind of use the analogy that DBSAlliance.org is focused on being able to find out as much information as possible as you can on your illness, and FacingUs.org is focused on being able to spend a little bit of release time and investing in your wellness.
So those are kind of some very simple overview. Again, it’s all about peer inspiration. So we have video stories, we have music, we have artwork, all from individuals that are in similar situations.
So here’s how you can reach out to those individuals through a variety of e-cards. And recently within the last year we also launched a creativity center that has podcasts, workshops, and online courses to help individuals incorporate creativity in their life as a recovery tool.
America, do I have a couple more minutes to run through the tracker?
America Paredes: Yes, go ahead.
Cindy Specht: Okay. Something we recently launched in the spring of 2009 is actually the DBSA WellnessTracker. And we did this as yet another tool that’s accessible through DBSA and through FacingUs.org because we’re reacting in response to - there was the study that came out from NASMHPD years ago that indicated that individuals are dying 25 years earlier, individuals that live with mental illnesses are dying 25 years earlier than the general population.
We really wanted to be able to have a focus change from just having clinicians just strictly look at mental health issues, but also to look at physical health issues. So the WellnessTracker is a comprehensive component that envelopes both mental and physical health component of things.
You log onto it through Facing Us, and you can access it, again, if you’re registered with Facing Us you can track using the WellnessTracker. Once you get to the main site of that and then you easily step through five different tabs across the top.
And it’s really meant to be really quite fast, very user friendly. The first time you get into WellnessTracker, it’d probably take you about 10 minutes to set it up because you’re entering one-time data information or things that change rarely, and then after that literally individuals have said, it probably takes them maybe only about 3 minutes, depending about how many personal notes they might want to do. So it’s something that you can do every day to invest in your personal wellness.
For instance on mood, we do have an opportunity for individuals to track their overall mood for the day, ranging from manic to depressed, or depressed to manic, or stable. These are screen grabs. You’re not going to see complete screenshots for the entire tool. But we also have a place where individuals can indicate if whether or not they might be in a mixed state and plot a second point if they are. And you do have an opportunity to be able to chart moods, second moods, or third moods, if you’ve had a dramatic shift in your mood throughout the day.
The next section after you save and continue, you move on to a Symptoms section. There are approximately 17 different symptoms that you can choose to track some of them or none of them. They will collapse at the bottom, so you can always decide to track those at a different time if you’d like. You simply pan over the number and make the indication as far as how severely that symptom is impacting your life on that particular day.
This is one of the bottom portions. And you kind of just see that I’ve highlighted a couple of different areas. And again, the little blue box that’s to the left of each of the symptoms can be closed or open to be able to say you would like to track that.
Then you simply hit the save and continue button, and you move on to Lifestyle. Obviously Lifestyle we all know plays a huge factor in peoples’ moods and perhaps fluctuations. So you’re not going to see again all of these different components here. But we’ve tracked things such as sleep—we tracked things as far as medication.
If you did select no on this you have an opportunity to say, well, I didn’t take medication at all today or I took a different varying amount. And be able to record a note for your doctor to be able to say, this is why that happened or this is why I made a change from my regime.
You’ve got walking exercise--it’s not shown here—but alcohol intake, tobacco intake, recreational drugs, menstrual condition, as well as significant life events, and be able to create specific notes that are kind of tailored to that that you might want to flag when you’re actually meeting with your doctor.
Then we move on to the medication tab. And this is where you can have a record of all of your different medications. So we’re going to address things such as all your mental health prescriptions, all your physical health prescriptions, and all your supplements or over-the-counters. Because all of those could have interactions with one another.
It’s pretty quick and easy to be able to add those. The system itself will generate a flag on the report if any of those things have changed. So, that it’s pretty easy then to be able to cross-check those with mood fluctuations and changes in medication or dosages of medications.
We do allow individuals to indicate and record side effects. And your side effects would again, if it was listed as strong or severe, would be flagged on your report.
And then finally we have an opportunity for an individual to track key and specific health statistics such as your weight, your heart rate, your blood pressure, your cholesterol levels in panel, as well as for diabetics your hemoglobin A1C piece, as well as this is the area that you would actually input where your exercise goals are that you then are cross-referencing within your lifestyle components.
So as I said, the real goal of this is for people to be able to keep track, but we want to be able to see what those results are. So that’s where we get to the reporting component of this. And those reports can be accessed several different ways. It’s always available in the upper right-hand corner and/or from the homepage you can enter it a couple of different ways.
This is one of the first pages of the report that’s generated. Actually what happens is all the reports are generated into a PDF format. That PDF does not have anyone’s name on it. Again, we do not keep that information in the database, but we do allow a space on the report for individuals to be able to write their name, and then they can choose which section of the report, if any, they would like to share with any of their clinicians.
So the sections are divided into key areas so that you can make that choice yourself, and obviously you could always make that choice. But it’s a great kind of overview in terms of talking about what is included in the reports, what the expectations would be, what are the types of things that are flagged, et cetera.
The first part of the report is the OnTrack report. And as you can see here, it’ll give you an overview of your overall mood, whether or not you have any mood factors such as mixed states or mood swings; some additional factors such as sleep, recreational drugs, significant life events; and whether or not there was a change in terms of any of the prescriptions or medications, your dosages. Again, you’re seeing only a partial screenshot here.
And then here’s some of the flags that we talked about earlier where you might have had a change in medication, you might have had a significant life event, whether that’s positive or negative—all things that are really meant to be discussion points that you can bring up then with your doctor during the session.
Again, we all know how precious that time is, and so anything you can do to try and be able to flag those things more quickly is our goal. So here’s a snapshot of just a couple of the symptoms as they’ve been tracked, again being able to very quickly and visually see what any trends might be.
Here’s a key physical health statistics chart. We’re redundant on some of these, in case you wanted to use these with different clinicians. Being able to keep track of what those key statistics are, key physical elements such as again sleep, substance use, smoking, your weight record, and again how you’re tracking for personal exercise.
Then you do have an option, and the last report section is actually focused on your exercise goals. And this is something that you may or may not, depending upon how much of a goal this is with your physician, be able to then work with them. Otherwise it’s just a great tool for people to use themselves.
So that is actually a quick overview, a very, very quick overview, of Facing Us as well as WellnessTracker. And again, I would encourage all of you to be able to log on and be able to kind of experience it yourself. I would welcome any feedback or comments that you might have, and again, I would like to thank all of you for your time today as well as SAMHSA, CMHS, and Ro and Keith for sharing their stories as well. So thank you very much.
America Paredes: Thank you. That concludes the presentation portion of our teleconference. And we do have one question online that was received in terms of where they can access the presentation.
The presentation is being recorded and will be archived on the ADS Center website. It’s http://www.promoteacceptance.samsha.gov. The presentation files are currently up there for downloading, and the transcript and audio recording will be available in the next few weeks.
Operator, we can go ahead and open the conference to our questions. If you can, dial star 1 on your telephone keypad to ask a question.
Coordinator: Thank you. If you’d like to ask a question, please press star 1. You will be asked to clearly record your name, and then we use that to introduce you for your question.
One moment, please. Our first question comes from (Ruth Grant).2
(Ruth Grant): It’s actually more of a comment than a question, and it’s a little off the main topic. But I couldn’t help but notice when Cindy was going over the WellnessTracker in the health section, she listed blood pressure’s that are impossible. It listed systolic blood pressure of 100 and the diastolic of 110. The diastolic’s always more than 110.
I’m in the medical profession. That’s why I noticed this. And a heart rate of 45 is generally bradycardia unless you’re a marathoner. And a hemoglobin A1C at 14, they’d probably in diabetic ketoacidosis. So you just might want to give examples that are more in line with reality on those vital signs and lab results.
Cindy Specht: Let me respond to that. And again, I’m really embarrassed by that. Thank you very much. We actually had an intern going through, and we needed to have fake information, and I apologize for that.
And we will get those corrected right away. And then America, if I can reset that back. So these are some of the things that in our deadline for that we didn’t have the opportunity to recorrect that. So thank you very much for bringing that to our attention.
(Ruth Grant): You’re welcome.
Cindy Specht: And we’ll definitely get that corrected.
(Ruth Grant): Great. Okay.
America Paredes: Thank you. We have a question from an online participant. The question arises for the Facing Us. Is there an option where people can become friends with one another?
Cindy Specht: No, there is not currently an option for friends for that. That would be something that we would do via our Facebook opportunity.
America Paredes: Okay. Operator, do we have another question?
Coordinator: Yes. Our next question comes from (Ming Wong).
(Ming Wong): Yes. I’m just wondering, there was this online tool that is really eliminate a lot of geographic barrier. What do you think about the cultural barriers? Have you noticed that the different pattern of utilization for culturally diverse populations?
Cindy Specht: America, is that something that you think that Ro would be more in tune with, or is it something you want Keith or I to address?
America Paredes: If you want, all three of you can address it because each one of you have different perspectives on it. Ro, do you want to start?
Rowena Tse: Yeah. I think definitely culture plays a big part. In our forum, we ask for very little information sort of going in to register. So I don’t think that you would know just from a user name, what culture a person is or what ethnicity.
Our What a Difference campaign, at least for this stage, is really focused on the general market. And all of our marketing behind it and communications is really focused on the 18-to-25 general market that are speaking English.
But I think for our campaign we do have a multicultural portion of it that is in development right now. And that really drills down to more of talking to specific groups. We target African Americans, Hispanic and Spanish, we have a campaign that targets the Chinese audience in Chinese, in Mandarin and in Cantonese, and then we have a segment that targets the Native American.
So I think for our campaign specifically, for the forum it’s really general market but there’s definitely communication that talks about different cultural, either barriers to support or motivators for support. So we cover them off in a separate campaign.3
(Ming Wong): Thank you.
America Paredes: I also would like to add—I’m sorry if I interrupted you, Keith—Rowena, in one of your slides, on slide 17, there is a little bit of information that you got from the Pew resource in terms of different races and ethnicities that access mental health information online?
Rowena Tse: Yes, exactly. And I’m just going back to that slide right now and it looks like—it’s pretty even. From a race standpoint, white non-Hispanics, 28 percent go online to look for mental health info, African Americans 27 percent, Hispanics, 30.
So I think everyone’s online. They are going online to look at that information. And just to add, on the multicultural campaign that I just referenced, we will have websites for each of those audios with language and cultural information.
Keith Mahar: And just to add, obviously Mentalympics, they’re at the early stages but ultimately it would be nice to have various countries on board and then in different languages, et cetera, with different cultural and diversity embedded.
Cindy Specht: And lastly, for us, again, we don’t track that information as it relates to the online component, because as Ro had said, we ask so few personal questions we don’t know the cultural differences in terms of that. We do provide some of the tools on our main site are provided actually in Spanish.
But that’s where I think the excitement is regarding some of the work that Keith’s doing so that we can have some feedback from different nations across the world to be able to start to address some of those issues.
America Paredes: Thank you. Are there additional questions?
Coordinator: Yes. Our next question comes from (Barbara Myers). I’m sorry; the next question comes from (Laurie Boseff).
(Laurie Boseff): Yes. My question is, there was a mention—everything moves fairly fast—but there was a mention of something about the doctor’s input. And I was wondering if they are going to address the physical issues of the medication.
Like, I have a number of people that are medicinally induced diabetics. Now, granted, a lot of it had to do with they were already predisposed by genetics, but with the medications and the weight gains, they obviously got the diabetes sooner than they normally would have.
Is there any way to have that addressed by the doctors also?
Cindy Specht: I believe you might be referring that in terms of, to the WellnessTracker. And so I will address that as best I can.
Again, this is a baseline tool for us to be able to have to start those conversations related to that, because so many people have metabolic syndrome because of the medications and the condition itself. So that’s where we’re starting to be able to try and raise those conversations and be able to have something where doctors can actually have a singular report that kind of shows both those mental health issues as well as the physical health.
So that is certainly our goal, and that’s the reason why we’re integrating some of these physical health components so that some of that trend can start to be integrated throughout the mental health system. Again, it’s a very small step but I think it’s at least a step in the right direction.
(Laurie Boseff): Okay, thank you.
America Paredes: Next question, operator?
Coordinator: Our next question comes from (Barbara Myers).
(Barbara Myers): Hi. I have a question to I guess all three of you about what linkages, or what capabilities that you might have on your tools to link to other tools or helpful websites or helpful videos or helpful other things that are on the Internet.
And the reason I’m asking is that I produce a mentally television show about, each month focusing on a different mental health issue, in which I talk with clinicians and also with consumers about what it’s like to have an illness and try to give a hopeful outlook.
And I was wondering if there’s any way to, from your websites, to put linkages to the programs that I have, which are online that people can watch, either my information or any other helpful information that might be useful to people that are using your site.
Keith Mahar: If I could just jump in. That’s precisely the idea of this type of community channel, would be not just creating first-run content, it’s to leverage everything that’s out there that’s possible to put on and link.
I was just running a men’s group last week. I had Daniel Fisher’s, one of his YouTube videos. These young guys were nodding and agreeing and I got them talking about their mental health, and that video’s only been seen by, I think it’s less than 3,000 people.
So there’s so much good content out there, it’s a matter of putting them into a place where they can actually be used. So absolutely, I would definitely ask you to get in touch with me.
(Barbara Myers): Okay, good. Thank you.
Rowena Tse: This is Rowena. The site that I shared with you, that is really just a discussion forum, but it lives on the larger website for the campaign, which is whatadifference.samhsa.gov. And we do have a Resources page on there that links to currently a number of different organizations and a number of different websites.
And we’re always happy to consider other resources that are not on there. So definitely feel free to email it to me or email it to America and we will get back to you.
(Barbara Myers): Great. Thank you.
Cindy Specht: And this is Cindy from DBSA. And again, on both Facing Us as well as even more extensively on DBSAlliance.org, we do have a Resources link page for that. But I would encourage you to follow up with me directly, too, because there might be some opportunity to partner in some ways that are a little bit more interactive and strategic. And so that’s why maybe we could do it on that level as well, and that might be even more effective.
So again, I think America has my contact information there, and I’d welcome your call.
(Barbara Myers): That’s great. Thank you.
America Paredes: I’d also like to add that on the promoteacceptance.samhsa.gov website, there is a section called the Campaigns and Programs map that actually lists different campaigns and programs that are active in social inclusion efforts.
So if you’re interested in having your TV show listed on that you can always send us an email and we’ll work on getting that posted. And I extend that invitation to everyone. If you have a program or an activity that is really addressing the issues of social exclusion, send that information to us because we always are on the lookout of getting new information listed.
(Barbara Myers): Now, who is it exactly we send it to?
America Paredes: You can send it to promoteacceptance—and that’s all together—at SAMHSA—that’s S as in Sam, A, M as in Mary, H as in House, S as in Sam, A—dot hhs.gov.
(Barbara Myers): Thank you.
America Paredes: You’re welcome. Operator, another question?
Coordinator: Yes. Our next question comes from Randall.
(Randall): Hi. Am I on?
America Paredes: Yes, we can hear you.
(Randall): Oh, okay. Sure. Hi. The presentations were very interesting. I had a couple quick questions.
The first one is, it seems like a lot of the, going online and using anything online with a computer is, maybe it’s much more common among younger age groups. Is anybody aware of any projects or programs to try to kind of cross this digital divide for people who are not online, just to get them online so they can do any of these things?
That’s one question. The second question I had was, has anybody found ways to use Twitter, to sort of incorporate Twitter, and also maybe not necessarily through a computer but to use it like cell phone applications?
And my third, I have one last question, which is that does anybody have any knowledge about any government websites? A lot of these have the same kind of cross-communication interactivity built into a government so that people can communicate say with a State or a county or even a Federal agency in an interactive way.
Cindy Specht: This is Cindy from DBSA. As far as Twitter and cell phone apps are concerned, it’s definitely something that we’re launching over the next year. So we’re definitely going to be incorporating that. We want to make sure that if we use Twitter that we have the resources to keep it active and lively, and so obviously that’s one of the considerations.
Cell phone applications we’re very excited about being able to do and move forward with. As far as government is concerned, again, there’s our Legislative Action Center where people can communicate via that center. You don’t necessarily have to use our piece.
I don’t think that’s exactly what you’re looking for, but again it does provide a very easy forum to be able to send messages to your legislators about anything that you feel particularly passionate about, whether or not that’s utilizing our content or being able to do things on your own.
And lastly, as far as—and this is something I think Ro’s going to have some really great information on—but as far as accessing and using the Internet, there are statistics showing out there that Facebook is, for the elderly community, is actually growing. And I think with the advent of that and people being able to be more comfortable within the elderly community that I think you’re going to start to see natural acceptance of that.
Our biggest issue as it relates to being able to cross the technology hurdle other than that is just accessibility due to financial constraints. So that’s where we’re always looking for resources and really desperately searching for partners to be able to help us cross those barriers and be able to provide some more access through public community outreach.
Keith Mahar: And I’d agree with that. I think the idea of reaching out to consumer groups to try out programs maybe an afternoon a week where people can come in and have access to computer and learn how to use it, would one, be good for the organizations growing in memberships and serving their constituents. And it would also be another opportunity for face-to-face communication while also learning how to be online.
America Paredes: There’s also a lot of clubhouses that are actually getting individuals together who are learning really how to use the Internet and doing what you’re suggesting, getting individuals together once or twice a week to go and look at the Internet, look at different sites that may be able to get, where they can get more information or where they can actually form an online forum and then they learn how to use that capability.
Ro, did you want to add something?
Rowena Tse: I was just going to say, the target for the What a Difference campaign really focuses on young adults, 18 to 25. And we know that a majority of them are online, either at home or at school or at the library.
So I think it really depends on the target. We think that our target, they do live online, and for those that don’t have access, the campaign isn’t just 100 percent online. We do have materials that they can get, brochures.
So obviously I agree with what Keith and what Cindy said, is that we do need to somehow bridge this digital divide. But I think if we’re looking at the target audience of young adults, they seem to be fairly covered.
America Paredes: Definitely. Do we have another question, operator?
Coordinator: Yes. Our next question comes from (Dory Jaffee).
(Dory Jaffee): Oh, hi. I have a couple comments and a couple questions. But first I want to say thanks for all your work and your presentation. And it just seems, you’ve just done an amazing amount of stuff, so I just wanted to acknowledge that.
So one question was, I’m not clear about the parts where you say there are resources available and information about mental health. Is this mostly—I’m sorry, I’m on a medication that takes away words when I try to speak them, and that’s what’s happening right now—industry. Is it like industry-dominated or commercial-dominated forces, or is there room for I guess what you would call alternative views and discussions? And I’m thinking about people like David Healy, Peter Breggin, (Lisa A. Barro, Zeldon Christ), that kind of thing? That’s question number one.
America Paredes: Is that directed towards anyone in particular?
(Dory Jaffee): Well, no, because my memory isn’t even good enough to, I mean, the last person I remember presenting was the DB, the database person. But then I know that there was something before that I think, someone before mentioned something about resources. So I was just, for anyone who . . .
America Paredes: Keith, do you want to take that one first?
Keith Mahar: Absolutely. I guess as a person with lived experience, one of the issues of naming Mentalympians was to try to come up with language that actually is strength based and respected. And I find that looking at alternative views are very important, because I think that’s the only way people move forward. If the dominant view isn’t satisfactory then it has to be contested.
And in the definition of Mentalympian, originally came up with anyone who voluntarily competes against stigmas, prejudice, and discrimination by disclosing that he or she has experienced mental illness—we’re looking actually changing that to mental health problems in order to be more inclusive. The pros and cons—because the pros, it is more inclusive, the con is people sort of lose sight of what it is—because that is the general use of the word.
So definitely I see Mentalympians taking on alternative viewpoints and being a platform for everyone that is possible.
(Dory Jaffee): Okay. A comment I had, and this is just sort of my concern, is this thing about contests. I know how I feel and what I go through and some of the other people who I know, and what concerns me about contests, and I guess this is kind of addressed to everyone, but it is something I wanted to put out there.
Contest winners, there’s so much in our society about competition and about winners and losers. And I know that part of this whole mental anguish stuff has to do with comparisons and feeling less than. And I personally find it—part of what’s hard is I find it very hard to compete.
And the other thing is I know I’ve read books about—I don’t know if anyone’s heard of Alfie Kohn—but about how with all the external motivation that we’re presented with it kind of extinguishes our internal motivation. And so when I think of contests for people who already have problems with their true internal sense of self, I feel kind of worried, because I would hope that part of what some of us need is a sense of self and a sense of just feeling good about what we do, kind of no matter what it is.
And a sense of what I hope for in the world is that human beings would never have gotten anywhere without cooperation and without support. And so I just kind of get worried when I see this whole competition-contest thing.
Keith Mahar: I hope I can put your worries to rest. It’s not competing against other people; it’s competing against the recognition that there is stigma out there. So the idea of disclosing and that empowerment disclosing, that’s what it’s about.
(Dory Jaffee): I’m sorry, I wasn’t—yes.
Keith Mahar: I take on board—you’re very active in terms of—the whole idea is to build up that perception of self.
(Dory Jaffee): I agree.
Keith Mahar: And I think one way of doing that is to get people to stand up together on issues. And this would foster that type of collective approach. But also, in terms of the actual content coming up sort of to the national global level, it could be that you have a bunch of organizations that are affiliates, that someone is a member. They put their content up there and then it’s up to that organization to keep pushing it up.
Not everything can go up to the top on the sites, but maybe there could be e-learning tools so people could actually say, well, actually I want to increase my writing skills or my painting skills, or even collaborating with a bunch of other people. So then you put something up as a collective. So it would always be around being very supportive and a very safe environment.
Cindy Specht: And I think I would like to, if I can, just address that as well. Because you might have been addressing the fact that I said, yes, we have a new video contest that’s coming up.
(Dory Jaffee): That’s what I was referring to.
Cindy Specht: And I want to make sure that I acknowledge that.
Now, the first thing I want to clarify is, is that people can submit at any time their story. And it will be viewed and can be placed on if it’s something that they want to share. It’s not just, like, we don’t just have on the site, contest winners.
(Dory Jaffee): No.
Cindy Specht: Right. And so we don’t have that. And I completely understand the issues that you’re talking about for that. We’ve tried to do it in a very sensitive way. The reason why we have actually done contest really is because it’s actually been a very empowering thing for many individuals, where they are finally recognized for the work that they do as an artist or as a musician.
So it becomes a very empowering thing, and we’ve had our contest winners then present international conferences and be exposed to them, be able to have their work recognized. So in essence it’s to be able to recognize the work of peers and the great work that’s being out there and not to be defined by their illness, be defined by the fact that they are musicians and artists, and they can produce videos, and/or the fact that they just really can compel a very compelling story that would be meaningful to other individuals.
And really the only thing as it relates to money is the fact that it’s very difficult out there, and we want to be able to find some way to be able to share some of that back with individuals as well as any way we can. But the main thing really, is not to set up the competition so much as to be able to recognize individuals for their work at a different level.
So that’s really what it’s about. I think we do try to be very sensitive to those issues that you’re talking about and we try to structure the contests themselves in a way that’s very respectful and address and acknowledge those issues. So thank you very much.
(Dory Jaffee): Mm-hmm.
America Paredes: Thank you. Do we have another question, operator?
Coordinator: Our next question comes from (Ruth Grant).
(Ruth Grant): Hello. This is a very quick question. Is there anything like the DBSA website for people with schizophrenia? I ask because I have a 24-year-old son who suffers from schizophrenia and so I’m particularly interested in resources that might be helpful to him.
Cindy Specht: I will let you know in terms of Facing Us. We have a completely separate website called DBSAlliance.org. But the Facing Us, really, some of the symptoms that you’re going to see in the WellnessTracker are actually going to cross over a fair amount with some of those as it relates to schizophrenia.
They were developed specifically as it relates to individuals with depression, anxiety, and bipolar disorder (unintelligible). But obviously there’s quite a few. So I think even if you weren’t following what your specific symptoms were or that, or you’re only following some of the others, it’s still an opportunity for an individual to be able to use that opportunity as a way to start that discussion with your doctor and follow through on all the rest of the components.
So there’s five modules, and specifically four of those would be irrespective of the diagnosis. So I would say that—and that is for the WellnessTracker itself. As it relates to Facing Us, the clubhouse is concerned? All those tools are really quite nonspecific.
Again, it’s meant for anybody that’s looking, anybody that is looking to try to find some personal well-being.
(Ruth Grant): Okay. Thank you.
America Paredes: Is there another question, Operator?
Coordinator: At this time there are no further questions in queue.
America Paredes: Okay. I’d just like to ask one that was submitted online. How do individuals that maybe have high-risk behavior or issues with self-harm, is there a way for them to deal with, do individuals who are running these websites, is there a way for them to actually talk to these individuals, maybe pose something that then is referring to suicide or anything in terms of causing harm to self?
Cindy Specht: I think those are going to be related mainly to the discussion board components that Ro and I talked about. And I would share that I think both Ro and our site, actually they’re self-monitored sites. And what that means is that there is a reporting system.
In the past we have had individuals that have flagged that, where somebody might have been really concerned about another individual that was online. And so we do the best.
Again, there are a lot of legal limitations that resulted in that, and especially as we don’t necessarily have that information to be able to contact that person and we want to make sure we’re not invading those individuals’ rights as well.
So it is a very difficult and tricky situation to deal with. Again, that those are times though when we would rely on other individuals to be able to help flag that and bring it to our attention.
Rowena Tse: Yeah, and just to add on as an extra point. On the forum and on the What a Difference site, we feature very prominently the Suicide Lifeline. And in the discussion forum, if you click into the Suicide Lifeline folder there are just instructions on, not so much instructions but there’s a post that says, if you’re worried about somebody in this discussion forum, please forward that to either—please tell them to call this number or email this address.
So there are some instructions on sort of what to do. And then of course, there’s the self-monitoring portion.
Cindy Specht: And that would be some more for DBSA’s discussion boards as well.
America Paredes: Great. Thank you. Operator, are there any further questions?
Coordinator: Our next question comes from (Pat Sharig).
(Pat Sharig): Yes. I actually want to go back to the other woman’s question. And I think what I heard her ask was, are you aware of any other resources for people with schizophrenia where it’s a board and a site just that deals with the schizophrenia?
I know that the DBSA has the tools and stuff that would fit, but I think she was looking for—I heard anyway—that she was looking for a resource, and she hadn’t found any and was wondering if any of you had.
Keith Mahar: There is a site in Australia called Sane Australia, which is primarily for people who’ve experienced psychosis and very predominantly schizophrenia and bipolar disorder.
And it’s a very reputable site. She could try that just as a start.
Cindy Specht: And actually I think the best opportunity for that in terms of finding a specific—and I apologize if I missed that, I thought the question was directed as to whether you could utilize our site for the application schizophrenia.
Now, as far as again our main website for DBSAlliance.org is focused on depressions and bipolar disorder. So really as far as getting a site specific to schizophrenia . . . America? Do you have any—I think actually the government sites are going to give you your best resources as far as being able to connect to those individual disease-specific sites.
America Paredes: There’s actually like the World Fellowship for Schizophrenia and Allied Disorders, or NARSAD4, that actually goes out and speaks specifically about schizophrenia. So you can contact those organizations to see if they have any support groups of any kind.
The National Alliance on Mental Illness also has support groups, as well as the Depression and Bipolar Support Alliance, that may have specific support groups for different mental illnesses such as schizophrenia. So I think it would be wise to also check with your local information so that you can, your local NAMI information so that you can locate that information. But NARSAD is also very helpful.
Operator, is there another question?
Coordinator: At this time there are no questions in queue.
America Paredes: Okay. At this time we are going to conclude our training teleconference. A special thanks to our presenters for taking the time out of their busy schedules to share this information with us today and for Mr. Mahar for actually calling in so early in the morning from Australia.
Keith Mahar: My pleasure.
America Paredes: I encourage all participants to reference slide number 67 for additional resources. And if you would like to contact the presenters at a later date, please refer to their contact information located on slide number 66.
Thank you again to all speakers and to the participants for joining us, and we hope that you can complete the survey tool that you will receive tomorrow. Thank you and have a wonderful day.
Coordinator: That concludes today’s conference. You may disconnect at this time.
America Paredes: Thank you, everyone.
1 As of August 2014, this site is no longer being maintained. You can access an archived version of the site here: http://22.214.171.124. A general Internet search for “what a difference a friend makes” or “what a difference a friend makes videos” will help you find a range of campaign materials, including videos and brochures.
2 In this transcript, parentheses are used to show places where what the speaker said is inaudible in the recording, or, in the case of names, where it isn’t clear how the person’s name is spelled.
3 Although there were active multicultural campaign websites, these sites are now available only in archived form (with the African American campaign site archived at http://126.96.36.199, the Spanish-language site archived at http://188.8.131.52, the American Indian campaign site archived at http://184.108.40.206/native, and the Chinese American campaign site archived at http://220.127.116.11/chinese.
4 Since 2011, according to its website, this organization has been called the Brain & Behavior Research Foundation (https://www.bbrfoundation.org/our-history). Before that it was NARSAD, an abbreviation of the National Alliance for Research on Schizophrenia and Depression.