Applying Social Media for Patients with Rare Diseases

I’m in Houston, TX this morning to present at RARE on the Road, a workshop for patients and caregivers living with rare diseases.

This is the first of three such workshops this summer presented by Global Genes and the Every Life Foundation for Rare Diseases. The next one will be June 30 in Salt Lake City, and the final session July 21 in Nashville.

Here are my slides:

We’re glad the Mayo Clinic Social Media Network can be a resource supporting this worthy cause.

Using Buffer to Extend Your Twitter Presence

If you’re like most busy people (and like me) you probably grab small slices of time to engage in your social media accounts.

As a result, you may find yourself posting three or four tweets in relatively rapid succession, which can have two negative effects:

  1. People who happen to check Twitter around that time might unfollow you because they think you’re spamming, or
  2. Others who miss your five-minute outburst won’t see your post at all.

Buffer provides an easy, elegant solution to both potential problems.

Of course you can use Tweetdeck to schedule some of your tweets into the future, but with each tweet you need to decide the day and time you want it to be published, which is an extra step.

The nice thing about Buffer is that you can set a schedule of publishing slots once, and then when you add a new tweet it just goes into the queue.

Here’s the schedule I set up:

When I run across a post I’d like to tweet, I can just add to my queue, and it will be published in the next available slot. Any spontaneous tweets I post outside of Buffer will fill in gaps among the 2-4 regularly scheduled ones.

With the free Basic account you can have up to 10 posts in the queue. For most people that’s probably enough. I upgraded to Pro to increase the limit to 100.

Buffer works with other platforms besides Twitter

In conjunction with a curated source of content like our Mayo Clinic Champions newsfeed or the one we have on the Mayo Clinic Social Media Network, Buffer can make it easy to have a solid presence on Twitter in just a few minutes a week.


AASLD Webinar: Have You Googled Yourself?

Today I’m giving a webinar for the American Association for the Study of Liver Diseases (AASLD) focusing on the role social media can play in online reputation management for physicians.

Here are my slides:

AASLD has a helpful Social Media Essentials page you should check out, too.

What’s the Half-Life of a Tweet?

In emphasizing the ephemeral nature of Twitter when consulting with our Mayo Clinic physicians, I have often said the half-life of a tweet is about 30 minutes.

I put it in the lingo of radioactive decay because it is something that scientists naturally get. And while I didn’t have any formal data to justify that half-life estimate, it seemed about right.

But last week when I threw out the 30-minute half-life figure in a conversation, a physician asked: “Really? Is there data published on that?”

Because I didn’t know of any published data, and to see whether I was in the right ballpark, I decided to start a test on Friday.

First, to define the term Half-Life, I take it to mean the point at which half of the people who will ever see a given tweet will see it.

So in other words, if a tweet will eventually be seen by 200 people before heading into the abyss, the half-life would be the time it takes for the first 100 people to see it.

So this was the tweet I used for my quick-and-dirty estimate of half-life:

Going to, I tracked the growth in impressions for this tweet in 5-minute intervals for the first hour. Here’s the graph:

Within the first hour the tweet had 410 impressions. As the slope of the line indicates, it was slowing down significantly. Here’s the graph of total impressions each day for the first two days:

In the first 24 hours the tweet had 593 impressions. On the second day it got only 55, bringing the total to 648. As of this writing, the total is up to 659, so it’s averaging a little over one impression per hour so far on Day 3.


This tweet is on a trajectory to reach perhaps 680 total impressions, which would make the half-way point 340. When did that happen?

At 25 minutes it was at 332, and at 30 minutes it had 350 impressions.

So, it looks like my 30-minute estimate might at least be in the right neighborhood.

This is just the analysis for one tweet, and not necessarily a typical one. Curves for those that get more retweets would have a longer climb before flattening out.

It was kind of a hassle to set my watch alarm to remind me to grab a screen shot every five minutes, though. But if anyone knows a way to automate capturing impressions data for the first hour from a larger sample of tweets, I’d be interested in collaborating with you. Leave a comment or drop me a note.

You can become a SMUG Research Fellow. 😉

The Productivity Power of a Comma

If you’ve ever had to participate in a telephone conference call on your mobile phone, especially while on the go, you may have experienced the frustration of entering security codes to gain access to the call.

I’m probably on at least a dozen of these calls each week, and typically the calendar invitation has an 800 number to call, along with a notation that after dialing that number the participants need to enter a 6-9 digit access code.

So the invitation often looks something like this:

Call: 866-555-1212 Access Code: 1783256#

Clicking to dial the phone number on my calendar app is simple enough, but then I find myself flipping back and forth between the phone and the calendar app to remember and enter the access code before time expires.

I’ve been unsuccessful in this more than once, delaying the start of meetings, which of course wastes the time of everyone on the call as we’re waiting to get started.

I’m pretty sure I’m not alone in this problem.

Here’s a tip I got from Greg Matthews in a meeting last week that can solve it. His invitation followed this format:

Mobile 1-click dial-in (USA): 8665551212,1783256#

The comma between the phone number and the access code is the key. With one click on a mobile phone, it enables all of the non-host participants to join the call without having to fumble for the access code.

Can we all adopt this convention, please?