Happy Birthday Caring Bridge

USA Today has an article this morning (in which I’m quoted) about Caring Bridge celebrating its 15th birthday.

CarePages, a similar health-focused social network that launched in 2000, does accept advertisements.

Both “provide a good service in that they enable the loved ones or caregiver to update the site once to tell a lot of people who care what’s going on,” says Lee Aase, director of the Mayo Clinic’s Center for Social Media.

“It really does help relieve a burden” of constantly having to call or text, he says.

Thirty years ago, patients would come to Mayo Clinic for a few days of tests or hospitalization, and they or accompanying family members would go to their hotel room to call friends and family with updates.

Twenty years ago, as cell phones became more prevalents, that was the key update method.

In both scenarios, the calls involved repeating a lot of the same information, and added some stress to an already challenging situation.

Then Caring Bridge came along to make it possible for the patient to update a Web site and share news with family and friends once instead of through multiple calls. CarePages began offering a similar service a few years later.

Now patients have even more options, such as a closed or secret Facebook group among them, for sharing news with their loved ones. But still, many patients find these specialized services attractive because they may not want medical information connected to their Facebook.

So if you think social networking in health care is new or radical, Caring Bridge and CarePages both have more than 10 years experience serving patients and their families that suggest otherwise.

On Kids and Social Network Privacy

Yesterday I was contacted by Mary Brophy Marcus of USA Today for comment and perspective related to a survey of parents and teens on online privacy. I’ve included an excerpt of the resulting article below:

Three out of four parents (75%) say they would negatively rate the job social networks are doing, according to the survey of more than 2,000 parents and 400 teens by Common Sense Media, a national nonprofit organization focused on helping kids and families negotiate the social media galaxy.

“American families are deeply worried. Privacy is a huge concern,” said James Steyer, CEO and founder of Common Sense Media, who wants to see lawmakers update online privacy policies.

Steyer says the industry alone will never protect the privacy interests of children.

“Obviously we’re going to need updated online privacy laws which haven’t been changed since 1998, which is like Medieval, centuries ago. We need to put heavy pressure on the industry,” he says.

While the survey indicated that most parents (70%) think schools should play a role in educating students about protecting their privacy online, social media experts feel families should shoulder the responsibility, too.

“I don’t know whether it’s in the schools that education needs to happen, but it has to happen,” says Lee Aase, director of the Mayo Clinic Center for Social Media, in Rochester, Minn. “So much burden is on the schools. Some of this needs to happen in the families.”

Aase, a father of six children ranging in age from 11 to 24, says privacy tools are already in place that people are just not taking advantage of. He says there is immense power to punish bad behavior, including blocking people on Twitter and unfriending them on Facebook. You can also report abuses directly to Facebook.

“If someone’s really bothering or hassling you, you have the ability to stop them from communicating,” Aase says.

I also suggested, as indicated in the close of the article, that parents being friends with their kids on Facebook is an important safeguard, but also an important way to stay in touch.

A few additional thoughts and some background:

“Make the schools do it” is a cop-out. My dad was an elementary principal and then a school board member. He sensitized me to how often “make the schools do it” is the first “solution” offered to whatever perceived problem society faces. I don’t see training kids in online privacy protection as a core responsibility for public schools. I think it’s fine if some local districts decide they want to make it part of their curriculum, but with everything else they have to do, I don’t see this as the only (or best) way to deal with kids’ privacy online.

The schools aren’t the only place education happens. As SMUGgles know, learning online is cost-effective and interactive. And it scales. Unlike a traditional classroom in which a high student-teacher ratio makes learning more difficult, more people involved in an online environment improves the course quality, because learners get the benefit of others’ comments, questions and answers. And if we’re learning about online privacy, wouldn’t it seem that online would be the right context in which to learn?

Organizations concerned about privacy should provide great and engaging online curriculum for students and their parents. Most people read Terms of Use and Privacy Policy documents as thoroughly as a Mac user does software manuals (a bit of self-deprecating humor, there.) An organization with a passion for privacy could do a lot more good by creating online learning resources for teachers and parents.

By the way, with our Mayo Clinic Center for Social Media and the related Social Media Health Network we will be developing resources and training materials for patients and medical professionals to provide education on privacy settings and practices for those using social media tools in the medical context.

What do you think? Are online privacy laws hopelessly antiquated? Or is the main problem that people don’t take advantage of the privacy options most sites already have incorporated? How big is the online privacy problem? Is this a “huge concern” that has you “deeply worried” or is it a something you think is relatively well managed? What would you do about it?

6 Reasons Your Organization Should Get a Twitter Account

Nancy asks:

I’m trying to convince my boss we need to start a twitter account and she’s not convinced. My main argument has been that it would increase our exposure on the web through our links on twitter. Can you help me make a better case?

I saw your slide presentation on slide share on Making the Case for Social Media but it didn’t get to exactly what I need (or I missed it).

And on the slight chance that we do get to start twitter, what can I do to build a following?

Here are my top six reasons why organizations should have a branded Twitter account:

Brand Protection. If you claim your organization’s name on Twitter, others can’t. One headache you don’t want is having someone impersonating your organization on Twitter. Claiming your Twitter handle is a good step, even from a purely defensive perspective.

Scalability. You can have a Twitter account without putting a lot of human resources into it. It’s reasonable at first to use a service that converts the RSS feed of your news releases into tweets, without any additional human involvement. You do have RSS feeds, right? If not, see the Social Media 102 course, and also my third reason.

Serving stakeholders. A non-human Twitter account connected to an RSS feed isn’t ideal, but like RSS it does at least provide a way for people interested in your news to get it in a way that’s convenient for them. And as you become more familiar with Twitter, it can lead to a much better use, Listening and Engagement, which I list as my last reason.

Increased News Coverage. Journalists are increasingly involved in Twitter, and looking to it as a quick way to identify sources and story ideas. Here’s a portion of an email one of my colleagues got in late October from @KimPainter, a columnist with USA Today (click to enlarge):


Kim had seen one of our @MayoClinic tweets connected to our #mayoradio program called Mayo Clinic Medical Edge Weekend. We got her in touch with Dr. Richard Hurt, who was the guest on that program, and here is Kim’s column in USA Today in which he was featured.

It’s Free. Nothing I have mentioned above involves any cash. Your Twitter account is free. Twitterfeed to convert your RSS feed to tweets also is free. But even if you have to manually send tweets about your news, and including a link to your news releases, the time investment can be minimal. It doesn’t involve incremental cash outlays. If you’re like most organizations, you probably pay EurekAlert or PR Newswire or BusinessWire to distribute your news releases. If you are paying for those services, why wouldn’t you take advantage of a free tool like Twitter?

Listening and Engagement. The preceding reasons provide more than enough justification for getting a corporate Twitter account, but engaging stakeholders and listening to them is the best use for Twitter. For that reason, whether your boss approves a corporately branded Twitter account or not, I strongly suggest that you get your own personal Twitter account. Just dive in and start making connections. As you are using Twitter personally, you will see applications that are relevant to your work.

If you have questions about how to get started with Twitter, we have a whole Twitter curriculum here on SMUG to take you through the process. To answer your last question about building a following, see Twitter 103: Following and Being Followed, and Twitter 104: Four Steps to Building Your Personal Twitter Network.

Twitter 116: 3 Steps to Joining or Leading a Twitter Chat


Note: This post is specifically intended to help USA Today readers who are new to Twitter so they can participate in our #MayoUSAToday Twitter chats. For more introductory information on Twitter, see the Twitter curriculum.

Update: This week’s #MayoUSAToday Twitter chat is on concerns about memory loss. Join us from 1-2 p.m. ET on Thursday, Sept. 16.

In Twitter 115: 5 Benefits of Twitter Chats, I discussed why you would want to create (or join) a Twitter chat. Twitter 116 takes you through the how.

Prerequisite: It seems obvious, but to join a Twitter chat, you need to have a Twitter account. If you don’t have one yet, go to Twitter 102 for step-by-step guidance.

3 Steps to Twitter Chats


1. Go to Twitter.com and search for your desired hashtag. This applies whether you are joining an existing chat (like #MayoUSAToday) or creating one of your own. If you’re starting your own chat, your goal for this step is to find a tag that hasn’t previously been used.

2. Save your search for easy reference. When you see your search results for a chat you’re joining (like our Mayo Clinic/USA Today chat) you will see a “Save this search” link:


…right next to the “Real-time results for #(name of hashtag)


When you click the “Save this search” link, you will add that search query to your list of saved searches, like this:


3. Use the hashtag in a Tweet to start or join the conversation. Here is an example of a tweet I did as part of the #MayoUSAToday chat (click to enlarge):


…and then after refreshing the page, you’ll see that the tweet shows up in the thread:


That’s really all there is to it. When the chat starts, just click on your saved search link and wait to see what tweets show up. You should occasionally see a yellow bar at the top of your search results that looks something like this:

Picture 11

Just click that yellow bar and the new tweets will show up. To reply to any of them, just hit the reply arrow next to the tweet…

Picture 12

…and be sure to add the #MayoUSAToday hashtag to your tweet so it will be included in the conversational stream.

There are other ways to participate in a Twitter chat, such as through desktop clients like Tweetdeck or smartphone clients like Tweetie or Twitterberry, but for Twitter beginners this is the simplest way, just using the main Twitter Web site.

Is this clear? Do you have other questions about how Twitter chats work?


  1. Add the #MayoUSAToday chat to your saved searches, using the first two steps listed above.
  2. For extra credit, join the conversation if you find this week’s topic interesting.

Twitter 115: 5 Benefits of Twitter Chats


Twitter chats are an amazing way to bring together people for a focused conversation on a particular topic or surrounding an event, such as a conference or Webinar.

There’s no need for the people involved to know each other before the chat, and in many cases the chats can be great ways to connect with people who have common interests. For example, I frequently join the #hcsm chat for people interested in using social media in healthcare, and occasionally join the #hcmktg chat related to healthcare marketing.

For Mayo Clinic, we use a #mayoradio Twitter chat to gather questions from outside our local area for our Medical Edge Weekend radio program, and have done several joint chats with Mary Brophy Marcus (@BrophyMarcUSAT) from USA Today, inviting readers to discuss the topics of her stories with a Mayo Clinic specialist. We’re now using #MayoUSAToday as the hashtag for these discussions.

In 3 Steps to Joining or Leading a Twitter Chat, I take you step by step through the process of joining a Twitter chat. But first, here are some of the reasons you might want to participate. I’ll use the #MayoUSAToday chat as an example:

  1. Public discussion that spreads as it continues. When a new person joins the discussion by including #MayoUSAToday in a tweet, it spreads the word about the chat to her Twitter followers. Any of her followers who retweet or reply to her tweet extend the reach still further.
  2. Broad geographic reach. Speaking of extending the reach, the beauty of a Twitter chat is it can be worldwide. Some diseases or conditions just aren’t common enough to build a critical mass for discussion locally, no matter how metropolitan the location. Getting people together physically is tough, but with Twitter you can gather people with common interests virtually without them having to leave the comfort of wherever they use their computer. And of course with iPhones, Blackberries or Androids people can join the chat from wherever they are: I did a recent chat from O”Hare airport in Chicago.
  3. No need to raise your hand. Unlike an in-person meeting, you don’t need to be recognized by the moderator to ask you question or make your comment. Just include the #MayoUSAToday tag in your tweet, and you’re part of the conversation. If you use the tag to interject your marketing messages into a discussion, you won’t last long in the chat (or in Twitter). Users will report you as a “hashtag spammer” (a term that is part of a Twitter lexicon I plan to publish) and your account will be suspended. But if you’re a real person who just wants to join the conversation without hijacking it for pecuniary reasons, you’ll find people in Twitter quite friendly and open.
  4. Wallflowers welcome. It’s fine to just lurk and listen. You can just click the #MayoUSAToday link, for instance, and watch what others are saying. But more importantly, a Twitter chat can be a great tool to get discussion from the whole audience at a conference, instead of just those who are most verbose and comfortable speaking in public. So when I do a presentation, I generally create a hashtag that enables everyone to comment or ask questions. This can help make sure we hear from the introverts, whose ideas may not otherwise get as much consideration as they deserve, which leads to the final point…
  5. No time limits. Many if not most Twitter chats have a set time during which people have agreed to gather. The #MayoUSAToday chats are scheduled to run for one hour, during which time our Mayo Clinic subject experts are online to answer questions tweeted by USA Today readers and others drawn into the conversation (see Benefit #1 above.) But the time expiring doesn’t mean you can’t continue to tweet using the hashtag, and the conversation can continue on at a slower pace.  So if someone tweets with a #MayoUSAToday tag three hours after the scheduled chat ends, it just means the question probably won’t be answered right away, as it would during the one-hour window. This also obviously applies to conferences and other in-person meetings; just because people have gone home doesn’t mean the conversation has to end.

In 3 Steps to Joining or Leading a Twitter chat, I will take you step-by-step into joining the #MayoUSAToday chat, and you can use the same pattern to join other chats (or set up one of your own.)