New Connections Tweetcamp

I will be in Princeton, New Jersey tomorrow for a presentation at the Robert Wood Johnson Foundation as part of its New Connections program for junior researchers. We will start with a social media overview, but then will conclude with a 45-minute focused session on Twitter. The goal is to give these researchers a taste of how they can practically use Twitter and other social media tools to be more effective in their work.

Here are the slides for second half of my Friday morning presentation:

I hope you will join me in showing the speed, reach and power of Twitter as we conduct a mini-Twitter chat. Hopefully many of the researchers will have created Twitter accounts in advance of the session, and will be able to participate directly.

Our #TweetcampRWJF chat will start at 9:45 a.m. ET on Friday. I have created a couple of questions that are included in the last slide of my presentation above, and I’m asking the participants to tweet their own questions, too.

So if you have some time to share your experience with some younger and mid-career researchers, I hope you’ll join us. Or if you can tweet some pearls of wisdom between now and then, we would appreciate that, too.

Please tweet your introduction and answers to the following, using the #TweetcampRWJF hashtag:

  • Introduce yourself and give your location (or where you work) – City, State (Province), Country
  • Q1: What is the most important benefit you have experienced in Twitter?
  • Q2: What questions do you have about using Twitter in health care or research?

During and after the scheduled chat, I hope you will also engage in dialog with the students as they tweet their questions.

Studying a Rare Disease with Dr. Tweet

In the last few months I have had an exciting opportunity to be part of a Mayo Clinic project using social networking tools to assist in the study of a rare disease, and last week we reached a milestone with publication of a study in Mayo Clinic Proceedings.

One of our key team members is Dr. Marysia Tweet, so it’s almost poetic that we’re working with Dr. Tweet to use social media in medical research. You can’t make that up!

At any rate, the paper on our pilot study of SCAD (spontaneous coronary artery dissection) is published this month in Mayo Clinic Proceedings, as reported in the Wall Street Journal and described in this Mayo Clinic news release.

The really exciting part of this story is how the research was initiated by patients, and this Mayo Clinic Medical Edge story tells how it happened:

We’re continuing to use our social media tools to help with the ongoing research into SCAD, as the Mayo Clinic research team led by Dr. Sharonne Hayes is creating a virtual registry to study SCAD. This SCAD research post on our News Blog provides the information physicians and patients need to take the first steps to be included in the study.

The pilot study showed that this kind of virtual registry is feasible; 18 women signed up for the pilot within a week, and the initial 12-person study included participants from New Zealand, the United Kingdom and Canada as well as the United States. Dr. Hayes discusses the rationale for and the implications of the study:

Finally, here are some additional sound bites about the pilot study and its implications, from Dr. Hayes, Dr. Tweet and yours truly:

Our Mayo Clinic Center for Social Media mission is to go beyond the public relations and marketing uses for social media and find ways to apply these revolutionary tools in education, research, clinical practice and in the administration of health care organizations. I was really excited to have the chance to be involved in this first publication, and that we are having an ongoing role in facilitating this patient-initiated research into a rare disease.

Thesis 33: Decreasing Diffusion Time for Research, Innovations


This post is part of a series related to my 35 Social Media Theses, in which I will discuss and amplify upon each of the statements I believe define the social media revolution, particularly as they relate to healthcare. I’m starting with Thesis 33 because it has particular application in an extremely exciting project I’m working on right now.

Social media will decrease diffusion time for medical research and healthcare innovations

One of the most frustrating parts of being involved in medical research is how long it takes for innovations and discoveries to spread. It’s generally understood within the medical community that it takes about 17 years for a discovery to work its way through the medical establishment, to really change everyday practice.

Social media will help revolutionize this diffusion process by making research information more accessible not only to physicians, but also to patients and consumers. And in a moment, I’m going to invite you to participate in an experiment to help prove this.

Here’s how the process has worked until this point (Because this thesis is about the dissemination of information and not about the discovery itself, we will start our discussion at the point of discovery):

  1. Dr. A’s research lab conducts a study and discovers a better treatment that could or should change medical practice.
  2. He submits an abstract, or research summary, to the annual meeting of physicians in his specialty. The abstract is reviewed by the program committee, and if they think it is interesting and valid they invite him to create a poster to be displayed at the meeting and to be discussed by other physicians and researchers. If they think it’s extra interesting, they may even ask him to do an oral presentation in one of the program tracks at the meeting. Those who attend the session or talk with Dr. A at the meeting may be stirred to change their practice, or may decide to conduct some related research of their own. News reporters covering the meeting may decide to do a story about the research findings, but perhaps one percent of abstracts submitted get news coverage.
  3. On another track, Dr. A will typically submit his research findings to a medical journal for publication. These papers are “peer reviewed” which means other physicians and researchers in the field look at the paper and decide whether they think the findings are valid and important enough to be published, and whether they’re something really new. This process of review and publication typically takes at least several months, although some of the journals are now publishing online before print, to help get the word out sooner.
  4. If the paper is published by the journal, the findings again may be the subject of news coverage, but for that to happen it requires a PR person (like me) to decide the research is likely to be interesting enough to reporters that they will be willing to develop a story. Then the reporters need to convince editors or producers that the story will be interesting enough to readers, viewers or listeners to be worthwhile. I would estimate that at best perhaps 10 percent of journal articles receive some news coverage. Of course, that varies by journal, as the the general ones like JAMA or New England Journal of Medicine or Mayo Clinic Proceedings may get one or two papers in the news, while the more specialized journals like Journal of Hand Surgery typically don’t get any mainstream news coverage.
  5. As Dr. A continues research related to the topic, this provides further opportunities for dissemination, and as other researchers in the field submit articles to journals they may cite his paper as a related resource upon which their research was based.
  6. Dr. A may be asked to visit other academic medical centers to discuss his treatment methods, which will help get more physicians personally familiar and hopefully even applying the results in their practices. He also may be asked to speak at continuing medical education (CME) courses, which help physicians get up-to-date on recent discoveries.

In the health communications system today, most participants are trying to do what’s best, as they see it. But it still takes far too long for valuable discoveries to become mainstream practice, and as a result patients don’t get the best care they could.

Thesis #33 says social media can help accelerate this process of knowledge diffusion. Here are six reasons why:

  1. Social media don’t depend on reaching mass audiences for their economic viability. Mainstream media have scarce space and time and must be able to interest an audience sufficiently large to be attractive to advertisers. The social media space is practically infinite, so researchers with a story to tell or a message to spread have no real barriers to getting to the Web and reaching the group, however small, that might be interested.
  2. Even if a condition is rare – or especially if it’s rare – it’s worthwhile to shoot a Flip video describing the latest research, upload it to YouTube, and embed it in a blog. Rare conditions are less likely to have lots of material already published, so your post is more likely to reach the coveted first page of Google results for your keywords.
  3. Social media tools can tighten connections between researchers in the same field. Whether through Twitter, Facebook or physician-only sites like Sermo, social platforms take the friction out of maintaining relationships and sharing information.
  4. Social media tools make it easier than ever before for patients with a common disease or condition to find each other and to share resources. And they don’t have to live in the same community.
  5. Physicians and patients will increasingly interact in social networks. Patients will be able to form online networks for nothing, and as we have seen with Wikipedia, will be motivated to share the latest news and research findings with each other. Some physicians will also join these networks and will interact directly with patients.
  6. Patients will bring what they have learned online into office discussions with their own physicians. They will be motivated to spread the word about a discovery that could have implications for their own treatment.

I am pleased to announce that at Mayo Clinic we are conducting an experiment this week to see, among other things, how social media can help reduce this knowledge-diffusion time for an important discovery.

Dr. Richard Berger is a Mayo Clinic orthopedic surgeon who discovered an explanation for mysterious wrist pain in many patients whose MRI scans appear normal. In the video below, he explains the injury, called a split tear of the UT ligament, and how he discovered it:

Dr. Berger has developed a simple, non-invasive test for the UT split tear, which he describes and demonstrates below:

Here’s where the social media experiment in diffusion of medical research information comes in. Dr. Berger (@RABergerMD) will be participating in a live #wristpain Twitter chat about mysterious wrist pain and the UT ligament split tear on Thursday, Nov. 12, 2009 from 4-5 p.m. EST. The format for the chat and more background information about the injury are available on the Mayo Clinic News Blog, but I have embedded a widget for all tweets using the #wristpain tag below:

  1. If you personally are experiencing wrist pain, I hope you will join us for this #wristpain Twitter chat.
  2. If you know people who have complained of nagging wrist pain and haven’t been able to get answers, please forward the information about the #wristpain chat to them. They also may ask questions and engage in discussion directly on the Mayo Clinic News Blog. The Twitter chat also can obviously start before the Thursday afternoon appointed time, and can continue afterwards. But during that 4-5 p.m. EST time Dr. Berger will be online.
  3. If you don’t have wrist pain, and you’re not aware of anyone who does, you can still help spread the word, because who knows how many of your Twitter followers or Facebook friends might have a split tear? Dr. Berger thinks it may be as common as a tear of the ACL in the knee, but because it isn’t widely known it remains undiagnosed in countless patients, as it was in Philadelphia Phillies outfielder Jayson Werth…until he came to see Dr. Berger. So please post the link to this post on the News Blog, or to this post here on SMUG, to your Facebook profile, or send it out as a Tweet to your followers. If you’d like to be even more involved, you also could do a blog post about the Twitter chat and could embed the Twitter search widget you see above in your post or in your blog’s sidebar. Go here to get the code.

As Dr. Berger says, this is a relatively unusual case of an injury that is debilitating but is easy to diagnose with a highly sensitive and specific test and also can be easily treated, with 95 percent success. It all comes down to knowing what to look for, and that depends on spreading the word.

I hope you will join us in this experiment. It’s not about getting more patients for Mayo Clinic; if it really is as common as an ACL injury, there’s no way Mayo and Dr. Berger could treat everyone. And in fact, in our News Blog post about the Twitter chat we are planning to post a list of several surgeons at other hospitals that Dr. Berger has trained in the fovea sign and in treatment of the UT split tear.

It’s about helping to cut a few years off the typical diffusion time for medical innovations, so patients with this unexplained wrist pain can get the help they need to be restored to full, pain-free function.

We have another interesting element of this experiment I look forward to announcing tomorrow morning, so stay tuned….

SMUG Research Project: Facebook Professional Privacy Best Practices

As an online institution of higher learning, Social Media University, Global has two elements in its mission:

  1. To provide practical, hands-on training in social media for lifelong learners, and
  2. To conduct research that advances our understanding of the business applications and implications of social media.

In Facebook 210: Professional Profiles, Personal Privacy I offered guidance for people interested in using Facebook for one-stop personal and professional networking.

Now I’m inviting all SMUG students and others who are interested to join me in testing those recommendations so we can learn together whether Facebook’s variable privacy settings make it safe for both kinds of networking.

Please do check out that course for the full rationale, but here’s the short version of my recommendations for how you can use Facebook’s variable profile access settings to minimize the risk of having your co-workers, supervisors, customers, clients or other professional associates (such as journalists for people working in PR) stumble upon something on your Facebook profile that would be potentially embarrassing or unprofessional.

  1. Create a “Professional” friend list in Facebook
  2. For your existing Facebook friends, add any of your professional associates of the types described in the paragraph above to this “Professional” list.
  3. In your Privacy settings, add your “Professional” list to the friends who are excluded from viewing certain potentially problematic profile elements. To my mind, these would include:
  • Basic Info
  • Personal Info
  • Photos Tagged of You
  • Videos Tagged of You
  • Your Wall

If you don’t know how to create these exceptions, check out slides 11 and 12 of the Facebook 210 presentation.

I think these settings will alleviate 99 percent or more of the possible problems anyone might experience by doing their personal and professional networking on the same site.

But let’s find out! If you add me as a friend, I will do likewise to you. I’ll make you one of my Blog Friends, which is a list I have set up with the same profile limitations as my Professional friends. Then you can see for yourself if anything about me that shows up in your Facebook News Feed is potentially problematic. I’ll do the same for you.

I would really like to find out whether using these settings can prevent your personal Facebook activities (and those of your less-professional friends) from causing work-related problems, and I hope you will help.

So I’m starting a research project. Please go to the SMUG group in Facebook, and join the discussion board on this topic. Indicate your willingness to participate, and then all of us can add each other as limited access friends. Hopefully, we’ll get a critical mass of friends in this class, so we can look at each others’ profiles and watch our news feeds, and see whether we run across anything that could conceivably have career-threatening implications.

I’m betting that with these settings as I have described above, we’ll be just fine. I’m not doing a $100 SMUG challenge as I did with Secret Groups; let’s just call this a metaphorical bet. But maybe we’ll see some additional tweaking that might be necessary.

And after a month of so of not having any problems (or after having made adjustments that we find are advisable), we may have a set of Professional Privacy Best Practices that would enable people to use Facebook for both personal and professional networking.

Then you will be able to fearlessly invite your co-workers, customers, clients and other professional associates to be your Facebook friends, and will be able to use the collaboration power of Facebook to enhance those relationships and to enable you to work more effectively together. You’ll have closer relationships and provide better service.

In this way, I hope SMUG can add to the academic body of knowledge about social networking, and can practically contribute to society by helping to drive adoption of a single multi-purpose platform for networking.

My research thesis is that Facebook can be that common platform. Let’s see if we can prove or disprove that thesis.

Perhaps this could be project in which the Society for New Communications Research could participate. I also will be trying to connect with others who have an interest in this issue of personal vs. professional networking. If you know people with such an interest, I hope you will invite them to join the research project.

SMUG Facebook Hacker Challenge Update

The SMUG $100 Facebook Hacker Challenge, which I conceived in response to a question during this podcast interview, has attracted some interest.

Anthony at AllFacebook put out the all-points-bulletin for hackers to give it a shot. And Goob said

Frankly, I think it’s just a great publicity event. Promise some money if people can do something you’re confident is impossible, let a ton of other sites write about it and link back to you, and sit back and relax. I can [sic] the same thing though. I’ll give $1 million dollars to anybody who can figure out the number I’m thinking of between 1 and 78 gazillion. See, it’s that easy.

And Justin Flowers added, while misspelling my name,

While reading the post, I suddenly realized that I had a similar challenge that I wanted to make, and that, in fact, I was willing to offer more money for mine.

You see, I, Justin Flowers, trust the security at the US treasury so much that I’m willing to offer a $1000 dollar reward to anyone that can break into the US Treasury, and steal $1,000,000 US. If you show me the 1 million, I’ll pay up. I’m willing to double my payout if you bring me a picture of you in a vault at the Treasury.

In their rush to sarcasm, they both Goob and Justin missed the point. The security of the US Treasury isn’t in question, and this isn’t about mind reading. No one doubts whether the banking system is safe from being hacked (even by Danny Ocean and his 10 friends).

But data security for business information is precisely the issue with Facebook. I get the question a lot, as I did on the MindComet podcast:

“If I use a secret Facebook group for business planning, can I feel confident that my data will be secure?”

And that’s the reason for the SMUG Facebook Hacker Challenge. I’m betting $100 that the answer is “yes.”

Do I hope lots of people link to the hacker challenge and spread the word? Yes, because that will help us find the answer to our question about data security in Facebook secret groups. This is a real academic research project.

Unlike Goob, I’m not thinking of a random number for someone to guess. I have a real answer for someone to find on this secret Facebook group, if they can beat Facebook’s group security. It’s right there, in the recent news section of the group. And the information itself is worth a lot more than the $100 bounty.

Yet in the blog discussions of the hacker challenge, one question that’s been raised is whether the $100 prize is lucrative enough to attract the attention of a really proficient hacker. In fact, in the comments on the post announcing the challenge, the mysterious jmprei offered to do it for $1,000. I guess the $100 isn’t enough for her or him.

As a professor at SMUG, I do have the security of tenure (after all, I’m the Chancellor), but since

  • we don’t charge any tuition for our online university, and
  • our University Endowment is…well…zero, and therefore
  • My SMUG salary also is nonexistent…

I’m not ready to raise the ante on my own. (In fact, my wife says the current hacker challenge prize has to come out of my Christmas money.)

So if anyone else thinks it’s worth raising the payout to find out how safe your business-related data would be in a secret Facebook group, here’s an opportunity for you to provide some extramural research funding for SMUG.

I’ve established a PayPal account for the SMUG Research Fund, and have transferred $100 into it. Whoever meets the SMUG Hacker challenge first gets whatever is in the account at the time of the hack.

So it becomes a fun little game of chicken for any hackers who think a $100 prize (and worldwide fame) isn’t worthy of their time and talents. As SMUG students or any interested bystanders make their $1, $2, $5, $10 or larger contributions to the SMUG Research Fund, I will update this post to indicate the new prize level.

I think it may eventually reach the point at which Greed and Fear will intersect for some hacker. They would then have the Deal or No Deal decision to make: Do I wait for the prize to go up and increase the payoff, or do I claim it now to avoid having someone else snipe it?

Please note: None of our 40 students (cool!) should feel any obligation to contribute.  Social Media University, Global is a free university. Also, contributions to the SMUG Research Fund are not tax deductible. But if anyone does want to help advance our practical knowledge of whether Facebook is safe for business data, click here or in the SMUG Research Endowment widget at the bottom of the right sidebar.