Below is a 6 minute video that walks through how the large community of people caring for loved ones with disabilities and health issues can use the Carespace platform to better organize content and create new conversation.  The brief video walks through how to add a link to content and put structure around the information.  Working together I have no doubt the community can create a better resource then any group of editors ever could.  I look forward to hearing feedback.

Brian

Applying Social Web Concepts (Video - Part II) from carespace team on Vimeo.

Here is a 4:30 minute video clip that walks through how Carespace has built a platform to better organize existing information on the web around areas of disabilities and serious health issues.  The brief video shows some  examples of how other sites: Youtube (video), Digg (social news), Last.fm (music) have used social web strategies to achieve great outcomes in organizing content.  This is the first of a two part video series on the Carespace platform.

It dawned on me this Sunday afternoon, as we launch CareSpace into the wild, that it might not be intuitive to everybody on how we can use "Social Web" technologies to make it easier for people in areas of disabilities and health issues?   So I figured "Why not?" spend Sunday afternoon talking a bit about what is going on with the new "Social Web" and how we can leverage it to our benefit.  The Patriots played Thursday night this week so it gives us a little extra time to pontificate around some of this stuff.

Much of today's web innovation is a direct result of people’s willingness to share, be open, and most importantly participate on sites.  It is difficult to imagine just a few years ago we were debating if people would feel comfortable entering their credit card numbers on the Internet.  Wow - has that game changed!  Today, younger generations of people update their every single move on Twitter and Facebook. Somewhat older generations also post their entire resume and all their credentials online at Linkedin.  The last year or two the "Social Web" has really started to take off like a rocket ship.  When a shift in human behavior collides with a medium such as the Internet the potential for innovation is boundless.  To say “We have only scratched the surface,” might actually be an understatement.

This is probably a bit of old news, depending where you are on your social web curve, but two big sites that have gone main stream in the last 12 - 18 months are: 

Facebook - a site/platform where you can connect with family and friends (new and old); share photos; chat online with people you know; and play lots and lots of games.  Facebook has 160 million users (across the world) so you are almost guaranteed to be able to connect with someone you know.  Facebook is all about connecting and doing social things with people you know online.

Linkedin – is more of a professional networking site where you can post your resume; map your network of business connections; give and receive references; look for jobs; network; and ask and answer questions around industry domain expertise.  It is much more of a business networking site.

Depending on who you hang with, you probably have received an invitation or two to join these great sites in your inbox.  Although Linkedin and Facebook both have different objectives, they have more then a few things in common:

1. Their growth has been driven 100% by the consumer’s willingness to “openly participate.”
2. They each serve a clear purpose and need.
3. They started with niche audiences and evolved.  Facebook started with college students at Harvard.  Linkedin launched as a tool primarily for tech professionals to network with each other.
4. They required significant investment to get where they are today.  Facebook has raised $516 million dollars since its inception in 2004. Linkedin has received $103 million in investments since its inception in November 2003.

Linkedin and Facebook are 4-5 years old, have been wildly successful, and will continue to dramatically change how we stay connected with friends and share our professional credentials.

One of the other sites whose meteoric rise has transformed people’s willingness to openly participate is Digg.  Digg is lesser known outside the tech community, even though it has over 35 million active users and is one of the top 25 sites on the Internet – traffic wise.  Digg was also started in 2004, and is commonly referred to as a “Social News” or “Collaborative Filtering” type site.  On Digg, users share content with each other by submitting stories, articles, and other media they are interested in. When you submit a story, you a put a few tags (organization structure) on the article so others are easily able to find the content.  People on Digg, then vote these stories up (interested) or down (not interested.)   In adition to marking your interest related to content on Digg, some interesting conversation starts to happen around these articles. As a result, a tremendously strong community starts to build in areas of interest.  Digg is much different then Facebook because in most cases you don't know your friends.  You just know that you have similar interests based on the stories you have Dugg.  Digg uses the power of community to customize your news and other aspects of online entertainment.  It is turning the media world upside down.

So what does this all have to do with CareSpace?  At CareSpace, we firmly believe the same open concepts that enable Facebook, Linkedin, and Digg can be used to improve access to information for the millions of people who care for loved ones with disabilities and health issues. Rather then organize news stories (Digg), friends (Facebook), or business contacts (LinkedIn), on CareSpace we can work together to organize all the things important to consumers who care for loved ones:  supplemental benefits, doctors, and other helpful content (Careguides.) 

The purpose of the site is not to create new content - we do not have editors.  There is a lot of great content already on the web.  It's just all over the place.  By working with the community to better organize useful imformation, we beleive we all can make it easier for everybody who cares for a loved one with a disability or health issue to find information.  Interacting around organized content will also drive interesting ways to connect with people in areas of interest.  CareSpace is a site that enables the community to organize content and help each other.

There is only one thing we need to make this happen - community participation!  So if you haven't had chance yet, come on into the site or send it over to a friend.  If you receive a supplemental benefit that is already in the site "Click On It."  If you receive one that is not in the site then "Click the Submit" link and add it for others.  Play around with the Careguides application.  If you know a helpful resource, feel free to add a link and put a little organization around the content. 

Give the site a shot and work with us on this special project.  The only way this will happen is if it is driven by the community.

Brian

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Well, it has been several months since we last posted to the Carespace blog. I am sure at least my family noticed. The reason for the silence is all efforts have been inwardly focused on building the Carespace product itself.  In addition, navigating the myriad of issues you face when launching a start up in an economic apocalypse has taken up a bit of time. I guess it helps a bit to be deeply passionate and committed to what you are trying to accomplish. If Carespace isn't a passionate endeavor, then I don’t know what would be!  Paul Graham from ycombinator, a well known start up incubator, has an interesting video  on this topic at StartupSchool.org. If you want to learn more about this subject it is definatly worth the 20 minutes.

I would also like to announce that after months of development effort, we are now officially “Open for Business” at CareSpace.  I hope someday find it funny that the final push to get the site up and running came in October of 2008 - which will certainly be forever engraved in the economic history books. Over the last few days we have moved the official CareSpace site into production.  You can now register and officially enter the site. After registering, you will receive an email verification before you can login. (Make sure to check your spam box.) Click on the link in the email, enter your email and password created at registration, and we can start our journey to make life easier for the millions of people who care for loved ones with disabilities or serious health issues.

We are very excited about the potential of the site.  We are also equally grounded in what we still need to get done. There is no question the site still needs some work.    What is also undeniable is that we have officially opened the doors for business.

We have one goal – 6001 registered users in two weeks. Why 6001? It is rumored that Facebook had 6000 registed users in its first two weeks.  I figured it would be fun to grab at least 1 more user. If we get to 6000 registered users I am sure we can find at least 1 more.

Come on in and try out the site. Some applications are still not up and running but you can certainly get a feel for what we are trying to accomplish with the project. Our first objective, beyond getting a good base of registered users, is to perfect the “Benefits Finder” application.  This application was created to make it easier to find supplemental benefits.  Benefits are submitted by the community.  It is very easy - it will take you about 1 minute to add a benefit.  Just think of all the people you could help by making it easier to find benefits they might be eligible for.  I will be posting a lot more about the benefits finder application as we get the community going on it.  I think the timing is ideal for this application. Who wouldn’t want to find a way to save a little money in today's environment?

Look forward to hearing everyone's feedback on the site and communicating more regularly on our progress.

Gotta run - 5991 more registered users to go.

Brian

The responses to my last post illustrate some of the many takes on the word "caregiver." I'm grateful for all of them. Intense feelings about who we care for often supercede more general ideas around "caregiving." So much so that any talk about grouping us together sometimes seems to detract from the individual experience.

At the same time, we know that parents of children with different illness or disabilities have a lot to share by way of information and support -- even though when we do go looking for others, our search usually follows along the trail of a particular medical issue.

So I'll be direct about the challenge of building the community for Carespace. I know that Carespace must be valuable and inviting to a mom and dad with an autistic child who want contact with others just like them. I also know that they may benefit from interaction with all sorts of moms and dads. (Not to mention that they may also be caring for an elderly relative.) But the reality today is that we haven't established the idea of a global community of "caregivers." It's not yet ingrained in the overall dialog. To make this concept useful, we'll have to discover the value of links between different "caring types." This is something most of us will have to experience before we take it for granted.

I have a related question, because I've been thinking about how bloggers could grow their audiences through the Carespace community: Do you believe that bloggers -- the vast majority of whom write about very specific illnesses or disabilities -- can or should play a significant role in broadening our perspective and creating helpful links between what are now separate camps of (what should we call ourselves?)  caregivers? Thanks in advance for your opinions!

Ron Slate

Recently I had a conversation with Nell Casey, the healthcare journalist who edited An Uncertain Inheritance: Writers on Caring for Family (William Morrow 2007). Nell mentioned in passing that "people generally don't call themselves out as 'caregivers.' " There seems to be a gap between how people who care for loved ones think of themselves, and how thought- and influence-leaders describe the community at large. And that's just the point. To influence policy and practice, leaders employ the term "caregiver" to distinguish millions of people from the overall population and to suggest their commonality. But the ones caring for a child with special needs or a grandparent with dementia think of themselves as people, not caregivers. People selling things on EBay don't think of themselves as "auctioneers." A person posting a video on YouTube doesn't think of himself as a "videographer." But if these people needed laws passed in Congress, their lobbyists might use such labels.

It's a plain fact that huge parts of a population may not get recognition until their interactions become visible to everyone else. Not long ago, teenagers and college kids weren't seen as a powerful group by marketeers. Today, youth culture deeply affects the culture as a whole. Just look at Barak Obama's appeal to youth and how far it's taken him. Facebook, as a networking location on the web, has played a big role in turning "young people" into what everyone else sees as a group phenomenon.

But "caregivers" haven't yet reached this level of group identity. We haven't yet had adequate ways of finding and reaching each other -- and the world of service and product providers hasn't yet created a productive dialog with us. The community at Carespace has the chance to make a dramatic difference, just as YouTube and Facebook have. 

Do you have an insight as to why caregivers don't call themselves out as such?

Ron Slate, CMO, Carespace

On taking responsibility for an elderly parent, many of us hustle to the library or bookstore for the latest how-to books on managing the issues of aging. I wouldn't persuade you to do otherwise. But I would encourage you to obtain a copy of Kathy Phillips' The Moon on the Water. In 34 brief chapters, Phillips tells the story of how she moved her father from her girlhood home in New Jersey to her place in Hawaii. (Phillips teaches English at the University of Hawaii.) The episodes alone would provide both guidance and inspiration. But Phillips' does something more. She introduces us to a mythic Chinese figure often depicted in ancient art,named Kuan Yin. Known for her compassion, Kuan Yin  (whose name means "the one who perceives the sound of suffering") calmly faces the inevitable pains and difficulties of life, aiding others. It is this universal human quality that inhabits the telling of The Moon in the Water. The story-teller's voice is honest but not bleak. Her eye takes in every charming and sad detail. The writing has a quietly moving effect on the reader. Avoiding sentimentality, Phillips is a master of sentiments.

Phillip's father Marvin had been a fireman and a brakeman, a man who had seen a lot in his life and who now was equipped with a defibrillator and whose memory was fading severely. As we listen to Phillips describe their daily challenges, we barely notice how much information we are absorbing. The move to Hawaii brings with it many relatively small bureaucratic issues that add up to a series of delays and endless tasks. Marvin's railroad pension must now be deposited in a local bank; to open an account, he needs a state ID with picture. To get a state ID, he needs a birth certificate. Then comes the transfer of Marvin's health insurance from state to state. Phillips contacts the Hawaii Medical Service Association (HMSA):

"An HMSA worker, Harriet, sends me six booklets to choose form, each fifty pages. Hazarding the "65C Plus" plan, I fill out the application, which asks for a copy of Dad's medicare card. He says it's in his wallet. I unfold the dilapidated leather and find a picture of Mom from half a century ago, wearing bobby socks and a tight sweater; a picture of me as a baby, wearing nothing; ah, a card with "Horizon Medicare Blue" blazoned on the border." But weeks later, she receives a letter from HCSA sending word that the application has been rejected. A weeks-long, drawn out process ultimately results in the transfer. Phillips' chapter on dealing with her father's tax returns is a brief epic in itself.

"Frustrated by illness and exhaustion, Dad suddenly starts getting angry," she writes. "Anger has never been part of my experience of him." Marvin's moods are relatively stable on the whole. The interest here lies more in how Phillips perceives and reacts to the situation. Her ability to tap into her own Kuan Yin is the key. But I wouldn't want Phillips to be regarded as some "new age" philosopher. Everything in The Moon in the Water is rooted in reality. Shopping for Marvin's needs requires Phillips to constantly evaluate products and services. When Marvin begins to lose bowel control, Phillips writes, "Sometimes generous friends offer to pick up supplies for me. But it's better to go with them ... For example, get 'underwear,' not 'briefs.' Get sixteen-count, first choice, eighteen-count, second choice. No, don't get eighteen-count at all if it says 'super-absorbent.'  The sixteen-count is already thicker and more absorbent, for nighttime, whereas the eighteen-count is less absorbent for daytime."

I've really only touched the surface of this moving and engaging book. It's filled with the wisdom of caring. The Moon in the Water also encourages me to think: I, too, have the ability to care with sensitivity and skills for my parents.

[Published April 2008, 160 pages, $19.95]

Ron Slate

Reporting in the Boston Globe, Todd Wallack gives some much needed attention to a new model of collaboration between nonprofit foundations and biotech companies. Specifically, the foundations are investing in companies to support early drug research. In 2000, foundations invested $7 million in biotech. But by 2007, that figure had leaped to $75 million. Why is this happening? Why would the Cystic Fibrosis Foundation announce that it will invest as much as $49 million in Epix Pharmaceuticals?

The answer is simple. In order to take a drug to market, a company needs access to capital. But capital is hard to raise from investors (usually venture capitalists) if the market for the drug is “too small,” or if there is no preliminary proof that a drug could work. So foundations have jumped into the breach, dedicating dollars to jump-start research. The Cystic Fibrosis Foundation says that it has already supported the development of 30 potential drugs that otherwise would not have been pursued.

In starting Carespace, we’ve been fortunate to receive the investment support of individuals who “want their investments to have the same kind of social impact as their donations, an idea called mission-related investing,” as Michael Fitzgerald reported in The New York Times. Michael Porter’s consultancy, FSG Social Impact Advisors, estimates that mission-related investing has increased by 16.2 percent each year since 2002.

The Cystic Fibrosis Foundation illustrates the power of advocacy – where committed people take action, even bucking conventional wisdom about where to draw the lines between corporations and foundations. We see the same thing about to happen in the area of open dialog between people caring for loved ones.

Here are the dynamics involved:

First, directors of foundations are facing up to the fact that their own communities need a better way to communicate and share information. As we can see, their funding priority is research and advocacy, as it ought to be. To some degree, but not yet sufficiently, they are also waking to the value of dialog between their own constituencies and people caring for loved one in all the other disease- and disability-states.

Second, it’s clear that no single foundation or group of foundations is going to build and sustain a platform to empower 50,000,000+ people – to interact with each other as an influential social force, and to pool their knowledge in a precedent-setting fashion. But this is exactly what appeals to the investor who wants to blend progressive social goals with an opportunity to build a major market presence.

Technology has helped millions of people use the Internet to find information about caring for others. But caregivers have adapted to the technology, not the other way around. Just as the Cystic Fibrosis Foundation is championing its own cause by investing in innovative drug R&D, enlightened investors are working with our company to create something everyone says is a great idea.

The disability community is abuzz about the The Disabilities Savings Act of 2008 which was filed by Sen. Chris Dodd (D-Conn) on March 11. A similar bill has yet to be introduced to the House. The Act encourages individuals and families to save funds specifically for disability-related needs in tax-advantaged Disability Savings Accounts (DSA’s). It also includes a refundable tax credit for low-income savers. A DSA would operate like a college 529, helping those who care for loved ones without affecting their eligibility for other benefits. Promising to eliminate the complexities and costs of setting up disability needs trust and offering tax relief to financially strapped families and individuals, DSA’s could deliver significant value. We can all agree on that.

To start the advocacy engine, Bob and Suzanne Wright and the passionate community of Autism Speaks applied their deep commitment and substantial publicity prowess to helping to launch Dodd’s bill. When the Senator announced the bill at his press conference, he referenced the importance of the bill to the autism community. Then, Wright added his comments. It was a bright beginning.

But getting such legislation started is a different matter than getting it passed. The question is how to get the Act passed quickly and without getting lost in the political process. To do this, we’ve got to open the lens on the entire disability community and make Congress understand that a huge percentage of its voting constituency wants to see the Act passed without delay or undue compromise.

Congress needs to be made aware that this bill is not just about autism. It’s critical to the men and women who returned injured from serving in Iraq. It’s essential for the millions of children who have genetic disorders that never receive a formal diagnosis. It’s about all the forms of cancer.

When the legislative process slows, politicians have more opportunity to alter legislation to meet alternative agendas. We can’t let this happen. To get this Act passed, many people will need to be working the process every day. This involves bringing in as many strong voices as possible. That means the voice of disabled veterans from Iraq and Afghanistan, every part of the disability community, the financial community, and advocates for change in government and non-profit organizations.

For this act to pass quickly, good intentions from a few parties won’t be enough. Because this Act at first appears to reduce tax revenues, much work must be done to show that it most likely will be either revenue-neutral or a plus. Think of it this way. Financial institutions will pay more corporate taxes as these DSA’s grow. State and local government over time will shoulder less of the burden of supporting many disabled individuals. And so forth.

Let’s open the lens as wide as possible on the disability community. Advocates for autism alone will simply not provide enough star power and persuasiveness to move an institution like Congress – though we’re all appreciative of their leadership. By the time the Act rests on the President’s desk for signage, there should be no question that a massive part of our population wants the ink dried quickly.

Brian Costello / CEO, Carespace

Last December 2007, the United Nations declared April 2, 2008 to be World Autism Awareness Day in perpetuity. Since then, there has been a steadily growing stream of information about and coverage of Autism  in major media outlets. Of course, this kind of major attention can only help, and also helps bring attention to the many other issues many of us face as special needs parents.

Adding to the swirl of information about Autism has been the controversial decision last November 2007 by the National Vaccination Injury Compensation Program (VICP) that a vaccine containing Thimerosol may have caused the onset of Autism in a 9-year old girl.

A few weeks ago, we posted here an entry on sites about Autism that we like. There are many more sites about Autism and other diseases and disabilities that we did not have room to list, so please let us know about sites and blogs you trust.

In the meantime, here are a few sites about World Autism Awareness Day and some of the events surrounding it.

http://www.worldautismawarenessday.org/site/c.egLMI2ODKpF/b.3917065/
http://www.bio-medicine.org/medicine-news-1/Autism-Speaks-to-Celebrate-World-Autism-Awareness-Day-with-Day-Long-Series-of-International-Events-on-April-2-14013-1/
http://www.comedycentral.com/shows/night_of_too_many_stars/index.jhtml
http://autism.about.com/b/2008/03/16/cnn-wants-your-stories-and-questions-about-autism-for-a-full-day-of-coverage.htm

Thomas Falconer
carespace.com