Category Archives: Enterprise

Hashtags for Twitter Cancer Communities

Top ten hashtags associated with #cancer

Librarians have been geeking out, or grossing out, over hashtags since they first appeared. Some of the conversation has been about concerns over ‘allowing’ the public to define their own metadata, while much of it has been the flip side of trying to engage the public in generating metadata for library online collections, and thus enriching access and awareness for those collections.

Naturally, the general public simply move forward with creating new hashtags for their own purposes, largely unaware of the conversations and concerns of professionals in the area of metadata. This is as it should be. The idea of a Folksonomy, a.k.a. folk taxonomy, as originated by Thomas Vanderwal centers around the social aspect — real people, real folk, coming up with language that means something to them to describe content that matters to them with ideas that matter to them. Meaning.

I could go on about this for a long time, but today I need to focus on a particular aspect of this dynamic — a shift from folk+taxonomy to folk+ontology. Folkology? Folk ontology? Folktology? A little bit of digging leads me to folktology (non-scholarly) or tagontology (scholarly) as preferred terms for this, both of which are used roughly the same amount.

In social media, one of the greatest strengths has been the power to create community where none existed before, to connect and empower those who may otherwise be isolated. The most prominent examples of this in healthcare have been the emerging communities around chronic conditions (such as diabetes), marginalized communities (such as facial difference and transgendered), and conditions that create isolation as part of the lifestyle or treatment of the condition (such as mobility disorders, many types of cancer, and any condition expected to be fatal).

Taking cancers as an example, there is the immediate problem of the ambiguity of language. In the image at the head of this post, the hashtag #cancer is shown to be most often associated with the Zodiac, not with healthcare. This makes that term itself less useful for healthcare uses.

Symplur Healthcare Hashtag Project 07082013
Symplur: The Healthcare Hashtag Project:

In the Symplur Healthcare Hashtag Project, a crowdsourced collection of hashtags in health, there are over 2500 hashtags total, with over 100 (n=133 07/08/2013) related to cancer. These range from disease tags, to events, to scheduled chats, and more. When people enter a new tag, they cannot do so anonymously, and the tags are reviewed before being added to the database. The tag donor is also asked to define the tag category at time of submission. Non-event tags must be able to show that they are used by multiple people. All of this makes the quality of the collection superior to most hashtag databases on the web. (I often wish there was something similar for science hashtags, or information technology hashtags, etc. I also often wish that the project content was routinely archived for posterity through a neutral organization, such as a library, but that is another conversation to have.)

The problem? Not one of those 133 hashtags on cancer is the hashtag #cancer. Of course, it would be really messy to try to separate the zodiac hashtags from the health hashtags, so I can understand why it has been avoided. However, this problem of the commonly used hashtag being missing from the database occurs fairly regularly. It is a not unexpected problem with crowdsourced information collections. Here’s another example. According to Symplur, the preferred hashtag for ovarian cancer is #ovariancancer. If you actually prowl around Twitter, there is an enormous variety of tags used, with the most common being #ovca. The #ovca content is not currently being captured, tracked, or archived in the project database. I just this morning submitted the #ovca tag when I noticed it was lacking. Hopefully, it may be active by the time this post goes live, but the content in it would be sparse and would lack history.

Here are the top, ie. most common, cancer hashtags, according to Symplur.

#BCSM; #BladderCancer; #BowelCancer; #BrainCancer; #BreastCancer; #CancerChat; #CancerFreeMe; #CancerSurvivors; #CervicalCancer; #Chemo; #ChildhoodCancer; #ColonCancer; #Leukemia; #LiverCancer; #LungCancer; #Lyphoma; #Melanoma; #Mesothelioma; #OralCancer; #OvarianCancer; #PancreaticCancer; #PediatricCancer; #ProstateCancer; #SkinCancer; #TesticularCancer; #XMRV
Symplur: The Healthcare Hashtag Project:

You’ll notice a wide variety of types of tags, with a general approach tending toward long tags that include the full words. In actual practice on Twitter, this is the reverse of standard practice, in which tags are kept short to minimize the number of characters used. Many of these tags, like #OvarianCancer, have shorter alternatives that are also used heavily (ie. #ovca). For breast cancer, both forms appear in the Symplur list: #BreastCancer and #BCSM. #BrCa, however, was missing, just like #OvCa. I submitted it, also.

You see the problem? Problems, actually. Part of it is discovery of the terms used, part of it is the actual terms used, and part of it is the community working to ‘manage’ creation, use, and adoption of the terms. Enter @SubatomicDoc, a.k.a. Dr. Matthew Katz. Matthew is a radiation oncologist who has been active in a couple different Twitter cancer communities, most notably #BCSM (which he adopted) and #LCSM (which he initiated). #BCSM stands for breast cancer social media, and #LCSM stands for lung cancer social media. The process of coming up with a better hashtag for lung cancer, gathering a community around it, and developing traction and adoption, got him thinking. What about other cancers?

Matthew sent me a direct message last week about this. He’d been thinking, and had created a rough draft of what he is calling a folksonomy, but which is really more of an ontology, uh, folktology or tag-ontology. We went back and forth several times, thinking about metadata design, automated sorting in computers, common usage, structuring subconcepts, distinguishing proposed tags from currently used tags in other domains, and various other ideas of how to best structure these in a way that would be useful, practical, and true to the concepts and communities. Matthew released the initial draft at the ASCO site last week, with a substantial model integrating proposed and existing Twitter hashtags around cancer experiences and communities.

Matthew S. Katz, MD. Hashtag Folksonomy for Cancer Communities on Twitter. ASCO Connection: 03 Jul 2013 9:08 AM

Since then there has been a lot of reaction, with people asking for MORE. Frankly, that is not a reaction I think either of us expected. There are refinements and extensions evolving from the communities. It is becoming a richer and broader conversation. I’d like to see more medical librarians engage with this. I am no metadata specialist, and would love to see someone get interested who is more expert than I am with metadata.

One of the extensions that was proposed through Twitter conversations around this is the idea of secondary tags to connect common cancer issues with specific cancer communities. I’d roughed out a list of some of those issues for my book chapter for online cancer resources and search strategies, back in the MLA Guide.

CAM, biopsy, staging, caregiving, home care, chemotherapy, cancer medications, side effects, clinical trials, fatigue, new diagnosis, nutrition, diet, pain, prevention, lifestyle, second opinions, sexuality, survival, and talking about cancer to different audiences.
MLA Guide: Free Samples: Sample Chapters: Volume Two: Diseases and Disorders: Part IV: Cancers, by P. F. Anderson

One of the ideas Matthew is talking about is how to come up with a strategy for creating new hashtags that would open this up to others, what are the criteria or best practices for creating new hashtags. I did some thinking on this for my Enriching Scholarship workshop on Twitter Hashtags for Science.

Twitter Hashtags

Twitter hashtags mindmap:

I should make a separate post about the model I developed for thinking through best practices of creating new hashtags, but I’ll just put a placeholder here. The acronym is LUDDITE, which stands for:


LUDDITE Model for Hashtag Creation

These overlap in many key points with Matthew’s criteria in his ASCO post, however he includes critical points of working specifically for cancer and healthcare communities.

“It is disease-based;
It helps patients with similar diagnoses learn and share rather than be isolated by the cancer experience;
It is designed to make information more easily accessible;
It is unique enough to be distinguished from other topics online;
Brevity is key to allow more content/conversation, especially with Twitter.”

So, that’s as far as we’ve gotten, but we’d love YOU to join the conversation and thoughts around this. Please put comments about the hashtag model at Matthew’s post, and comments about the process here. Thank you so much!

UPDATE July 15, 2013.

An important followup post from Matthew (@subatomicdoc) is now up.

Cancer Hashtags: High Time or Half-Baked?
Matthew S. Katz, MD
15 Jul 2013 10:09 AM

Should Our Neighbors To the North Start to Scare Me? Canadian Government Tells Librarians, “Shut Up”

Library Charge Card Ripped Out

Yesterday, a Twitter friend sent me some rather shocking news.

National Post (Canada): Federal librarians fear being ‘muzzled’ under new code of conduct that stresses ‘duty of loyalty’ to the government:

According to the article, the new code of ethics is from the Canadian government agency known as Bibliothèque et Archives Canada | Library and Archives Canada.

Bibliothèque et Archives Canada | Library and Archives Canada:

Naturally, the first thing I did was to try to actually find a copy of the worrisome document. I tried browsing, and I tried searching within the site. I went to Google and did a search within the domain. Nothing worked. I found Codes of Conduct for other professions, archived from various publications, possible documents from several decades ago, but nothing BAC/LAC had authored recently.

A broader search brought up other articles expressing concern.

InfoDocket: Canada: “Federal Librarians Fear Being ‘Muzzled’ by Code of Conduct”

Eastman’s Online Genealogy Newsletter: New Lack of Freedom for Archivists and Librarians in Canada:

Canadian Library Association: CLA Govt Library & IM Professionals Network: Library and Archives Canada Code of Conduct:

Canada’s federal librarians fear being ‘muzzled’. By Margaret Munro.

Several of these included embedded copies of the document from Scribd, where it was posted by Margaret Munro, a science journalist.

LAC Code of Conduct Values and Ethics.

The document made it clear that it was shared only on the staff intranet. Personally, I find that worrisome for any governmental agency. The document also discourages engagement with social media, EVEN WHEN CLOSED ACCESS. The document fails to describe appropriate ways in which to engage positively with social media, instead focusing on censures. Here are the relevant paragraphs.

3.2.2 Duty of loyalty. With the current proliferation of social media, public servants need to pay particular attention to their participation in these forums. For example, in a blog with access limited to certain friends, personal opinions about a new departmental or Government of Canada program intended to be expressed to a limited audience can, through no fault of the public servant, become public and the author identified. The public servant could be subject to disciplinary measures, as the simple act of limiting access to the blog does not negate a public servant’s duty of loyalty to the elected government. Only authorized spokespersons can issue statements or make comments about LAC’s position on a given subject. If you are asked for LAC’s position, you must refer the inquiries, through your manager, to the authorized LAC spokesperson.

3.4.1 Access and use of electronic networks. LAC employees must bear in mind that social media are public forums and that posts on these media are at risk of being made widely available. Public confidence can easily be damaged by remarks that embarrass, criticize or otherwise comment on the actions of the Government, LAC, co-workers or other members of the public service. This is true whether such remarks are made from the LAC network or from an employee’s personal account. Employees should refer to Treasury Board’s Guideline for External Use of Web 2.0.

Right there, with that, they’ve made it legally impossible for government librarians in Canada to participate in Twitter chats, as I do several times a week. They’ve made it impossible to answer reference questions received through social media unless taken offline and with the permission of your boss. But it gets scarier.

LAC Employee: An individual employed at LAC, including managers and executives, indeterminate and term employees, individuals on leave without pay, students participating in student employment programs, as well as casual, seasonal and part-time workers. Although they are not public servants, individuals on incoming Interchange Canada assignments as well as volunteers and contractors are all expected to comply with the requirements of the LAC Code of Conduct.

OK, so, this makes it sound as if I’d be held liable by this policy if I was “hired” as a guest speaker or contractor to advise other medical librarians in Canada and the hiring was done through the government. And I’d probably recommend to our grad students that they not take internships in Canadian government libraries.

Don’t think you could just quit your job, and then speak freely. The muzzle applies for a year after employment ends for some positions, and longer for others.

I won’t say we haven’t had similar concerns for US Librarians, but most of them were not as broad in scope or all encompassing as this is. And the units of USA government who have created social media guidelines seem to have done a better job than this. But all of that is a topic for another post. For today, read this document carefully and pray you don’t ever have to follow anything like this; watch conversations in your own enterprises and governments, and try to keep this from happening wherever you are.

Creative Commons Licensing: Why and When?

Creative Commons: New License Chooser

I was just asked about whether or not to use Creative Commons licensing for slide decks put in Slideshare. Part of the conversation included the phrase “I want to block embeds”, which was pretty shocking to me. This type of conversation has tended to crop up for me most often with small business owners. Now, I’m working in academia. It’s a little different. So I can provide my thoughts on Creative Commons licensing pros and cons, but truly, it might be different for you. I have to respect the opinions of my friends who refuse to use CC licensing because of fear of loss of income, even when the very idea seem utterly baffling and contrary to me.

From my point of view, the number one benefit to Creative Commons licensing is that it protects your ideas, your brand, your creation. I used to have copyrighted websites. What I found happened was that the copyright seemed almost like a red flag to a bull, a taunt, as if I was saying, “This is mine, not yours, nyah, nyah, nyah.” People not only stole the content, but went through a fair amount of work to do so, and edited out anything that implied I ever had any authorship. Pretty hurtful. When I shared it more openly and freely, people used it, but kept my name with it. They asked me for permission. I got free stuff that folks made with mine. I even get comments on Twitter along the lines of, “Hey, we’re watching one of your presentations for my class in Canada!” I don’t know about who it is or how they are using it, but folk know it is my ideas. This has given me a reputation that I could never have built without other people sharing my ideas for me.

Red Magma: Something for Nothing:

Here’s an interesting example as a case study.

CASE STUDY: Beth Kanter

Beth Kanter is the author of Beth’s Blog: Nonprofits and Social Media, and a consultant who both applies social media to nonprofits and advises and consults with nonprofits. Beth has written and published books, is a frequent invited speaker and keynote, and has quite a prominent presence with concommitant prestige (About Beth). Now, even though small businesses are for profit, from my perspective small businesses and academia both have a great deal in common with nonprofit motives, sensibilities, strategies, and processes.

Beth has a licensing statement that applies to her entire blog: “This work is licensed under a Creative Commons Attribution 3.0 United States License.” Would Beth have the recognition that she does if she had chosen to NOT make her content Creative Commons? I don’t think so, not at all. Making your content available encourages people to re-use and cite your work. Face it, for each person who likes what you’ve done and re-uses it, this is free advertising. And it pays off, it really does.

Here is a great post Beth wrote back in 2009 about “setting your content free.”

Kanter, Beth. What happens when you set your content free with creative commons licensing?

Now, before you read any further, go to her blog and read the comments on that post. An active conversation ensued including tools, ROI (return on investment), expressions of gratitude, with many comments from her fans in notable places from Public Library of Science to

OK, now what happened next? Someone seemed to have copied the entire post and put a copy in their blog.

Spreading Science. The benefits of Creative Commons licenses.

I know what you’re thinking. Something along the lines of, “Whoa! I bet she was upset about THAT!” or “Hey! That’s not fair!” Also worth noting is that when I did my Google search that brought me these two links, Google ranked the Spreading Science post higher than Beth’s original. Now, how do you feel about that?

Now, go read the comments on THIS post. Beth and Richard go back and forth discussing how he adapted her original post, and both of them are pretty happy about it. They discuss the difference between attribution, copying, mash-ups, and more. It ends with Beth giving Richard free permission to do the same in the future with other of her posts. Beth has a win/win here. A new friend and potential collaborator, increased prominence and respect, attention directed back to her blog, and an expanded conversation around issues she cares about. If anyone does read the copy before her original, it cites her name and links back to the original post, and they can see from her comments that she is quite a pleasant person who actually does what she tells others to do.

There are LOTS of examples like this. I could not begin to collect them all. Many thousands. I am less aware of significant examples showing bad things happening from CC licensing, but that may be a selection bias on my part.

So, now, what if you are still REALLY uncomfortable with sharing content, or worried that you will lose income because of it? Here are some tips for the transition.

1. Be selective.

You don’t have to share everything for free. Share samples or examples or portions. Free samples have always been a great way to boost sales, IF the sample is something people actually want.

2. Design content to both engage but also leave significant space for what’s off-screen.

There are very sound pedagogical reasons for designing slides with few words (cognitive load theory). There are also very sound economic reasons. You can show off your visual skills while still reserving your skills as a speaker and presenter.

3. Consider the type of content.

You might want to share a graphic that distills the gist of your thought, but reserve the book or presentations that unpack that graphic, that explain what it means and how to use it effectively. This could be phenomenally attractive to those that have already attended one of your sessions, because they GET it, but can still attract those who want to attend a session and haven’t yet.

4. Consider the source of the content.

If you are heavily using open content from other folk, there is often a requirement or expectation that you will “share alike.” This means that if you are using someone else’s CC-licensed content, it is at best courteous to place your content also under a CC-license, and at worst illegal if you don’t.

Also, a word to the wise? If you are using public content, for example, a collection of tweets from the public stream, and then you try to lock down what you’ve created with other people’s content, it makes you look greedy and selfish. This will not make you look good. Yes, there are ways to curate or repurpose public content in ways where the law will allow you to copyright the new collection, but it is still often seen as rude. Stop and think about just how much new value you’ve contributed, and if a closed license is going to pay off for you more than the bad will you risk creating. It’s probably not worth it.

5. Consider the filetype.

Slideshare makes a great example for this. Let’s say you want to share a slidedeck. If you allow downloads, and then load the PPT or PPTX file, other folk can not only download the file, but can edit it later. That means they could keep the entire slidedeck the same, take out your name, and insert theirs.

There is a Canadian med school faculty member who did that with one of mine. Yes, I’m offended, BUT, the important part is that mine is still listed first in search results, has more views, more blogs, etcetera. So I am ignoring him, so that his content doesn’t get the panache of negative spin from my feeding him attention through being upset.

Instead, I learned my lesson, and if I feel strongly that I don’t want this to happen, instead of loading the original editable file, I load a PDF. There are other reasons to load a PDF, also. The PDF tends to do a better job of preserving the original formatting and fonts. I like to use creative fonts, so in general loading a PDF instead of a source file is better for me. Similar strategies can apply to other types of documents as well.

6. Watermark your content in some fashion (think steganography).

You can edit your image to have your name and date on it. You can use special tools to include encrypted data in your image or video. These mark the image as originating with you even if someone else steals it. However, this is an extra step, more work, and for me it is a real hassle. It slows you down for getting content out. This strategy seems to be primarily of value to photographers and other visual artists.



5 Lesser-Known Benefits to Creative Commons
– Search Engine Benefit
– Greater Copyright Clarity
– More Likely to be Quoted
– Less Time Dealing with Infringement
– An Actual License

5: Want to work together? (or) Don’t Compete, Collaborate!

Abrahams, David W. How Creative Commons licensing benefits industry.

JISC: Creative Commons Licenses, Briefing Paper (PDF).
– Simple legally
– Easy sharing & reuse
– Flexibility
– Improved access
– Administrative simplicity

Merritt, Tom. Does Creative Commons free your content? C|NET October 13, 2005.
“But it’s a gamble, and it’s not for everyone. Some people are making good use of that gamble. Some are even making money. Some just get marginally famous. Some just want to contribute to the world. That’s the corny part that a lot of people don’t trust or believe. And they don’t have to. But it doesn’t make Creative Commons dangerous or useless.”

Caveats, Debates, & Warnings

The Future of Creative Commons: Examining defenses of the NC and ND clauses

Moxley, Joe. Contrary to arguments by hardcore open education advocates, Creative Commons NC ND is a valid license for academic authors.

No, you are not allowed to use ANY Flickr images:

Creative Commons

Creative Commons.

Creative Commons License Chooser.

Thoughts on Preventing Problems in Social Media


The buzz today is about Burger King having their Twitter account hacked by a McDonald’s enthusiast. Getting hacked isn’t the same as having someone on social media start to trash your brand, or someone new tweeting something personal on the professional account, or an upset customer / client / patron making waves, or someone (especially a manager) simply misinterpreting something that was said online, but they all add up to “Trouble with a capital T.”

The Music Man “Ya Got Trouble”

For many years now, my favorite one-stop tool for managing social media trouble has been the Air Force Blog Assessment flow chart posted by Jeremiah Owyang.

Air Force Blog Assessment

Like most of what I’ve seen posted on the topic of social media crisis, this frames the issue as one of responding to the public, not one of proactive prevention. In the conversation on this topic in the Health Care Social Media (#HCSM) community in which I am active, conversations have tended to emphasize the same focus. In HCSM, since we are working so very hard to try to persuade other professionals to join us in social media, problems are usually interpreted as an opportunity for education and outreach, with people in the community often looking for how to use these events to both learn and teach. Often we find ourselves in the position of defending those who have been attacked for some minor social media infraction as part of educating both their managers and our own.

Proactive prevention is often seen more as corporate censorship than as delicate guidance, and if seen in that way can run the risk of stifling social media adoption and implementation to the detriment of the enterprise. We encounter this in both HCSM and science communication (#SciComm), with huge debates over how and when to silence those who promote “Woo” or quackery, with others stressing the importance of permitting a free and open conversation, avoiding censorship, and fostering trust through a strong and transparent dialog, taking advantage of false claims or misinterpreted claims to help guide more understanding of what is evidence, and how to identify quality evidence for decisionmaking. In other words, this can be a very tricky balance. I’ll add some more links in the resources section at the end of this post on these areas, but I do want to draw attention to Susan Etlinger’s post which describes micromanaging social media ONLY as a response to complete failure of education & preventive methods, and this report (also by Jeremiah Owyang) that focuses on preparation and prevention through leadership and modeling appropriate ways to engage, rather than through retroactive punitive actions or imposed censorship.

Last time the University of Michigan was working on social media guidelines, we discovered after the fact that two entirely separate groups were working on the same project at the same time, from different points of view. Obviously, there was a real need for it! We ended up with one team endorsing the work of the other team, and all were pretty impressed and content with what we had at that time.

UM: Voices of the Staff: Social Media Guidelines
Guidelines for the Use of Social Media (pdf)

That was 2010. About a year later, the Health System came out with an excellent and more detailed set of their own guidelines and training materials.

Social Media Policy & Toolkit:

Now it is 2013. That’s a pretty long time in social media years, as some of my colleagues have observed. Now, we (meaning various communities across campus) are talking again about revising or extending or updating (or all three) those earlier guidelines to address or account for various situations we’ve observed or experienced over the past few years. One important part of the process is increased efforts to bridge the various teams looking into social media guidelines, challenges, problems, and how to prevent them. This is important for a few reasons:
1) because the community of practice will have a richer collection of shared experiences to inform guidelines development than any single group or committee;
2) because the same community will have a broader range of practices and spaces in which they work, will have seen how solutions that work in one situation fail in another;
3) because engaging the community of practice in guideline development helps to ensure awareness, understanding, and support of the forthcoming guidelines.

As you can guess, even though I am part of one or two small teams having conversations about the proposed new guidelines, I am over the moon delighted to be able to talk with people on the other committees and have these broader conversations! As part of one of these conversations, I tossed out some thoughts by email earlier today, which I want to share here as another tool for broadening the conversation. This broader conversation also helps to support my efforts as a member of the External Advisory Board for the Mayo Clinic Center for Social Media (MCCSM), who are also developing a curriculum to address many of the same skill areas and competencies. So, let me toss these out, and hope for some reactions and comments.

1. There is a need for appropriate contacts and rapid consultation for emerging events related to social media activity around the enterprise presence.

2. There is a need for appropriate pre-planned advice or guidance for these types of events to be made available and widely disseminated.

3. Guidance should not focus solely on negative outcomes (ie. “bashtags”) but should include what to do when something positive is happening unexpectedly.

4. Guidance should include not just appropriate actions at the moment, but also for followup, both short-term and long-term.

5. Guidance should also include how to NOT create a problem where none exists — when prevention is needed, and when it is best to simply allow matters to run their course.

6. Is is absolutely essential that both the contacts and the guidance be quickly and easily discoverable both by official institutional communicators and by the general public, including staff (and students, in the case of higher education).

7. There is a need for a detailed curriculum for new staff assigned to work with social media. Awareness of this needs to be disseminated to deans, directors, department chairs, and project managers.

8. There is a particular need for the curriculum to include training for the many student workers or recent graduates who are now working with campus social media accounts.

9. There is a need for the curriculum to include training for those staff who manage the student workers in social media. These might include appropriate expectations, case studies with examples of right and wrong, training and supporting the staff, appropriate oversight, developing a voice, nurturing and encouraging the inexperienced enterprise communicator of social media, tools to develop the instincts for quick and appropriate response.

10. There is a need for clarification of the skills, training, and appropriate uses of social media in the context of personal accounts as contrasted with “block-M” official enterprise accounts.

11. Suggested guidelines would be helpful for how to select a hashtag in advance of an event (start with UM, keep it short, consider a standard department hashtag in lieu of specific event hashtags, etc.). Campus sponsored events should generally consider choosing a hashtag at the same time they create their posters and other marketing for the event.

12. All guidelines should be sufficiently liberal and encouraging as to not create barriers to campus adoption and implementation of social media, especially in the case of faculty.

Let me shorten this yet further.

1. Access
2. Guidelines
3. Ouch
4. Hurray
5. Calm
6. Findable
7. Training
8. Students
9. Managers
10. Enterprise
11. Hashtags
12. Open

Give me a couple more days and I’ll probably think of some way to work this into a memorable acronym of some sort.

I know, this is easier said than done, but we have to start somewhere, right? What else is most needed? Please share your thoughts and recommendations.


Agnes, Melissa. 10 Biggest Social Media Crisis-Related Lessons of 2012:

Air Force Blog Assessment:

Beatty, Luke. No Commenting Allowed.

Cabellon, Ed. Student Affairs Live Featuring David Felper and Colleen Towle.

Couts, Andrew. Dear Twitter, Corporate Censorship is Still Censorship [Updated].

Edwards-Onoro, Deborah. Recap: Legal Implications of Social Media Use on Campus.

Etlinger, Susan. Social Media Crisis Prevention: Can You Defuse an F-Bomb?.

Facebook Social Media Crisis Response Guidelines (PDF):

Lester, Aaron. Social HR challenges best addressed through clear policies, plans.

Minton, Joshua. The New Censorship: Social Media & the Corporate Employee.

Owyang, Jeremiah. Social Readiness: How Advanced Companies Prepare Internally.

Owyang, Jeremiah. Research Report: Be Prepared by Climbing the Social Business Hierarchy of Needs.

Poston, Leslie. Shining Examples of Excellent Social Media Crisis Management.

Social Media Crisis Prevention Tips From Sysomos.

Walls, Andrew. Exploring the limits of social media transparency, privacy and free speech.

Wombles, Kim. Claims Require Evidence, Not Hyperbole.

Hashtag of the Week (HOTW): University of Michigan (Week of October 1, 2012) #UMich #UMSocial

First posted at the THL Blog:

The HOTW series has been going on for a couple months now, and has so far focused on all the amazing content coming through Twitter from other places. What about the University of Michigan? Well, as it happens, the University has just recently announced some official hashtags and best practices for tweeting on behalf of UM. Therefore, this week there is not a focus on health or science, but rather on our home, our own University of Michigan.

Shows the hashtags on far left: #umich, #goblue, #umicharts, #umsocial, #uminstagram

Just to start off, there are currently FIVE official hashtags for use regarding University of Michigan business and activities. Those five, which you can see in the image above, are:


Here are a couple tweets from the announcement of the hashtags, and one with a link to an official blogpost saying how they should be used.


Now for some examples of the sort of things you’ll find in the hashtag streams!

Scope: All University of Michigan, all the time.

Scope: You can probably guess, but this is mostly about sports.

Scope: Used mostly by UM persons to discussion best practices and emerging issues for social media, or to alert campus social media experts that this is information you would appreciate them helping to disseminate to the public.

Scope: About arts and performances on campus or related to UM folk.


You may have noticed that some folk are using additional hashtags beyond the most important five, and that some of those appear to be semi-official. These are mostly for special campaigns or events. Here is a very small selection of some of those.

Other Not Official Hashtags Used for UM Business:

#HillTurns100 = For the centenary of Hill Auditorium.

#MGoBrazil = For President Coleman’s trip to Brazil.

#MHealthy = For health and wellness information and activities provided as outreach or for health literacy promotion through various UM health organizations.

#MTSG = For the “Mind the Science Gap” class taught by Andrew Maynard.

#UMActiveU = For the campus health and wellness initiative.

#UMBettyFord = For the events from the Ford School of Public Policy honoring Betty Ford during her upcoming visit.

#UMHeritage = About University of Michigan history and heritage.

As a general rule of thumb, if creating a hashtag for a UM event, it is a good idea to include the “UM” in the hashtag. That makes the tag tend to stand out to UM alumni, students, faculty and staff, which is usually what you want. You can always contact Jordan Miller, Director of UM Social Media, for advice on selecting an appropriate hashtag.

Starting Slow with Social Media: Slideshare Example

Pic of the day - A Different Kind of Steam Pipe

I work with units and communities across campus and beyond. Sometimes I partner with them on a couple items, sometimes questions are brought to me and I never hear back about what worked (or didn’t). There is quite a range of involvement and activities! Often communities or groups that are more focused on academic products and outcomes have a sense of reluctance about engaging in social media. The most frequently stated concerns are:
1 – “I don’t have the time.” (or don’t see the value of putting my time here)
2 – “What if someone else takes my stuff?” (losing control of your content/message/brand identity)
3 – “What if someone says bad things about me/us? Or someone comments and someone else thinks I said that?” (losing control of your reputation, otherwise known as, “I don’t want to look funny!”)

Can You Do This? Cross-Eyed?

#3 is fairly easy. If people want to say bad things about you, they will anyway. If they say it in your space, at least you know they’ve said it, and then you have a great opportunity to be the better person, and show your competence, intelligence, compassion and grace. Not to mention that as often as not, if a detractor pipes up in your space, your friends and admirers will often resolve the problem before you have a chance to figure out what you want to say.

#2 is even easier. If you’ve put your content in a social media space as well as on your website, then you have staked your claim to that content, associated it in a high profile way with your name or brand, and it is both dated and you’ve sort of reserved your “spot” in the search engine results. If someone else copies your post elsewhere, you still got there first. If you ONLY put your stuff on your website, then if someone else copies it and puts it in a high profile social media space, they just won. Search engine results will find what they put up, and probably list it before your version. The worst (and I’ve seen this a lot) is when someone puts a video or Powerpoint file up on their website. Someone else copies it, edits it to remove the author and institution information, and then puts it up under their own name. It is almost impossible to discover that they’ve done it, and for viewers of that version to discover your version. This is one of the STRONGEST arguments I’ve seen for putting your content in highly visible public spaces early, and often, and then keeping it there! I firmly believe that if you DON’T put your content in visible social media spaces you are at much higher risk of losing control of your content than if you do.

#1 is the real challenge. The message behind #1 is “I don’t see the point” or “I don’t see any value.” If you can truly and honestly address that concern, the other concerns seem to just melt out of the way. Show me the value, and I’ll find time. Show me the value, and I’ll find a way to manage the risk.

For organizations that are really uncomfortable with social media, sometimes it is better if they perhaps start out in a space that is a little less high profile, where things move a little slower, and, if possible, where there is a direct relationship to their professional work. Slideshare fits the bill on all counts, and makes a nice way to slowly and gently break into social media.

It is easier, when I am partnering with a group on a presentation, to sort of break the ice gently, by telling them truthfully that it is routine for me to post my presentations online and that I am encouraged to do so by my management. They will usually consent. Likewise, when I attend professional presentations that use slides I almost always ask if I will be able to find the slides in Slideshare afterwards. Sometimes they say “Sure”, sometimes “No, but I’ll send you a copy if you email me”, and sometimes “What is Slideshare?” (I answer this last as, “Like Youtube for Powerpoint and PDFs.”)

Yesterday, I received a question from one of the organizations I’d worked with some years ago. We’d posted the slides from a joint presentation online, and they’ve been receiving steady use ever since, with occasional requests for permission to use portions of the content. The presentation was on a core mission for the unit, with high quality information of general interest within the field. The usage of the posted slides has gradually built up (from an initial audience of under 30 to thousands of uses in Slideshare) to where we are receiving fairly frequent and steady requests for the content. With each request for the content, I copy the original co-author of the content on any replies and conversation. This resulted in a Q&A that I thought others might find helpful as well. The discussion is posted below, lighted edited for anonymity and clarity.

Seems like we get flurries of requests to use images from the slide show and then nothing for several months. The two last ones came at a less convenient time for me. I should change the slides that have the images where I had to request special permission to use. I should ask the original owners if I may post the slide show there, with the understanding that creative commons licensing is encouraged and we hope they will allow other users to use the slide images in their current low-resolution. I did not post a credit line and I should do that so I can just tell others if they need higher resolution images they will need to seek them from the owners. What do you suggest? Possibly we need to add a page for credits with contact info.

It might be time to remove the slide show from slide share and post a webpage instead. It could be posted to our website under our resources. In that I could include details about how to request larger resolution images.

It would be very helpful for people to sign a guest book on that webpage too to see who is watching it. It would be open to all, this would just allow us to see who the audience is and get stats.

I do worry however, that that webpage might be difficult to find. Ideas, thoughts?

* Yes, there should always be a credit line for the source of the images. We can replace the current version of the slide presentation with an updated version and edit the description to show the date of the update.

* Yes, a credits page for image sources has evolved to be standard best practice now. It wasn’t as common back then, but if we are revising it we should definitely include that. Think of it like writing a paper and including a citation or reference for any quotations. People should do the same thing for pictures or charts, music, audio, videos, etcetera.

* It is a bad thing to remove content from social media sites, as it is generally perceived as an indicator of malfeasance or mistrust on the part of the folks deleting the content. It also breaks links other people pointing to the content, and breaks embeds if people have blogged or commented elsewhere. They won’t thank us for breaking their site. Instead, I would recommend including the content on the website and including a link in the description of the Slideshare presentation directing people to the more complete information on the site.

* Slideshare does provide simple metrics with the free version. I have attached a screenshot of the current metrics for an example presentation. They have more detailed information, but it costs money to get it.

Slideshare metrics

* I like the idea of a guestbook for the web site, but it will backfire if it becomes a barrier to content. It has to be an opt in thing. Again, a pointer from the Slideshare presentation (and other social media presence points) to the web site is the best way to attract people to the website. These days, you are right, that people tend to not go directly to websites, and it is harder to get people there without having engagement spaces. There are other ways to get the information you want – analytics. These can be set up to gather information on your visitors in various other locations.

A. Don’t ever delete content that has gathered attention. That is your SEO, your hook to your site.
B. Instead, expand that content. If something has proven popular on Slideshare, get a copy of it with audio in Youtube as well. Post both to your Facebook page and/or Twitter stream.
C. For both, embed them on your website, and in the Slideshare/Youtube/etc. spaces include links to your website.
D. Update the content and make a new version. Refresh the content in some way. Add a link from the old version to the new version to avoid breaking embeds and to help establish your reputation as an authority who continues to work in the area. Create a Flickr set or gallery with the images from the presentation, and direct people there for licensing information.
E. Use snippets from the presentation in a Twitter or Facebook etc. as quick short “Did you know __?” posts, again linking back to your webpage.
F. Brainstorm! What else can you think of? Once you have content that is taking off and getting good attention, how do you make that work for you (without too much effort on your part)?

Situation Normal – All Messed Up (or, LinkedIn Lessons Learned the Hard Way)

LinkedIn: Lessons Learned Community
A Twitter friend of mine contacted me last night with some concern. An acquaintance on her campus had contacted her administration with a screenshot suggesting awful things about her use of LinkedIn. What had she done that was so awful?

Well, what usually gets people in trouble on LinkedIn? Lying. Lying is such a pervasive problem in LinkedIn profiles that it is included in forum conversations and is frequently and prominently blogged. Was that what she was doing? Not as far as I know, and that was not what the upset was about.

Following closely on the heels of fudging your profile, another common problem on LinkedIn is profiles of people (more accurately “names”) who are completely entirely made up, false, fictional, fake.

LinkedIn Strategies: How to Identify a Fake LinkedIn Profile & What to Do About It

We can ignore that one in this case because, since I know her from other places, I figure she’s not fake. Well, if she’s a real person, and not lying, what is so awful? What’s left? Guess. I bet you can. It’s the one biggest problem of ALL online networks.

Spam. Yep. Spam is all over LinkedIn, just like it is for Twitter and Facebook and email and … well, just like it is for pretty much anywhere online.

Apple Support Communities: Is Anyone Else Getting LinkedIn Spam Messages? (2012)

LinkedInMan: Spam Me Not! (2012)

Business Insider: Spam Comes to LinkedIn (2011)

LinkedIn Answers: SPAM

IT World: Warning: Fake LinkedIn emails could infect your PC (2010)

PC World: Warning: Fake LinkedIn Spam Can Steal Your Bank Passwords: Bogus LinkedIn emails can infect your computer with ZeuS, a password-stealing Trojan. I know, because it just happened to me.

Whoa. That’s a lot of spam, a lot of types of spam, and it’s going on over several years. But it’s spam, right? It isn’t from LinkedIn, it isn’t from the people it pretends to be from. Most of the time, the spammers have scraped email addresses from some 3rd party (like a relative?) who just didn’t understand how to protect their email box, or clicked on the wrong thing. So what kind of spam was showing up with her account?

It has three letter "X"s in a row

Oh. That kind of spam. NOTE: The image is cropped and blinded to remove identifying information as well as the specific suggestions made as to her presumed role in this.

This got a little tricky at this point. The person writing to her admins was suggesting that this was somehow her fault. I don’t know, but I am guessing that the assumption was that she had been hacked. Anyway, that’s where we started, trying to figure out what had been hacked and what passwords she needed to change to keep them out of where they didn’t belong. I think we spent about an hour digging through links on her account, changing passwords, checking linked content to see if anything looked like what was coming through this tool. We also tried removing the tool from her account, on the assumption that if he was seeing spam from her come through this tool, it must be activated on both their accounts. Maybe? Uh, no.

The complainant had cropped the image a little close, so it was tricky figuring out the important details (important to me, anyway), such as the name of the tool that was reporting the problem. We figured it out. Name of the tool: Blog Link.

LinkedIn Apps: Blog Link:
In their words:
“Six Apart’s Blog Link app will let you:
Share your blog writing with your LinkedIn network.
See what your network is blogging about.
Syndicate blogs from Moveable Type, Typepad, Vox, and other platforms.”

This looks pretty authoritative, doesn’t it? After all, this is listed on LinkedIn’s own pages! And they have a page listing recommended apps to spruce up your impact, and this is included.

LinkedIn Learning Center: Apps:

Details on the app, and you’d use this page to ADD or REMOVE the app. (I’d encouraged her to remove the app from her pages, but you know what? She hadn’t added it. It wasn’t active. Now, that’s scary.)

LinkedIn: Applications: Blog Link (powered by TypePad):

In their words:
“Promote your blog and develop your personal brand. Everyone knows blogs are the best way to cultivate your personal brand. Now you can share the thoughts and insights on your blog on your professional home, LinkedIn.
Trusted news from your connections. Blog Link automatically pulls in the latest blog posts from around your network so you can be informed by sources you trust. Stay up to date on the issues that matter to you from the people that matter to you.”

By this point, since I could find NOTHING wrong with her content on ANY of her pages (Twitter, personal website, blog, etcetera), I was kind of nervous about the app itself. But I couldn’t prove any problems without actually (ugh, shudder) turning it on for my account. I had noticed that while HER content was fine and dandy, mine wasn’t in such good shape. My profile links actually still went to the links for my previous job, uh, maybe 4 years ago? Not good. So, before I turned on the worrisome Blog Link app I spruced up my own links! An important lesson learned for me right there. (I don’t spend much time at LinkedIn, but obviously, I should spend more.) I winced, flinched, bit the bullet, clenched my jaw, and installed the app. Here is what I found.

LinkedIn: Blog Link: From My Contacts for PF Anderson

Remember, this tool purports to be taking the links from the links identified as blogs of my contacts. As you might guess, I know all of these people. They are all American, two working in healthcare and one as a librarian. That two completely different people coincidentally blogged exactly the same title would be suspect in any case, moreso since the link goes to a Slideshare posting, not to either of their blogs, and the slides are in Portuguese and are not on any topic associated with either healthcare or librarianship. The last link given by the tool for a 3rd contact is also not remotely relevant. I went back and checked the links on the profiles for their blogs. Yes, the links actually went to their real blogs. What a surprise! So if the link location was good, had the blogs been hacked? No, the content in the blogs was good, too.

It looks like the Blog Link tool is pulling links from somewhere else entirely. I actually did more sleuthing and have more screenshots, but you get the idea. The LinkedIn Blog Link tool is BROKEN! It is not doing what it says it does, and I really wish LinkedIn would disable the tool until it is fixed so other people don’t get their reputations trashed by a tool that it a little too smart for its own good.

FDASM: Initial Draft Guidelines Focus on Social Media Requests for Off-Label Uses

Medical Mandalas - One Week of Pills

Continuing to update you on progress in this arena. While I was on vacation, FDA finally released their initial partial social media guidelines for comment. Comments are due mid-March.

Here are the files and links to the official documents.

Guidance for Industry: Responding to Unsolicited Requests for Off-Label Information About Prescription Drugs and Medical Devices, Draft Guidance (PDF):
Dated December 27, Linked from here:
Comments can be made here:!documentDetail;D=FDA-2011-D-0868-0001

Here are the main takeaways.

1. Draft guidance was released December 27 (not December 30 as some say). Open for public comment for 90 days. Focus of guidance is on off-label use, NOT social media, but includes social media as a component of the communication process.

2. Information on off-label use (use of a drug or device not officially approved by the FDA) cannot be provided at the initiative of the company, but must be specifically and explicitly asked for by the public or consumer.

3. Information must be provided privately (this could be a problem in social media).

4. Information provided must be scientific: “truthful, non-misleading, accurate, and balanced.”

5. Response must be limited to information about the firm’s own products, and must include the FDA-required labeling, clarification about the use not being approved, what are approved uses, safety information & warnings, a bibliography & citations.

6. Public responses should give only contact information and request to discuss privately.

7. Person responding must clearly identify their affiliation, and should be associated with the medical or scientific unit within the company, NOT the marketing or PR folks.

8. What is considered solicited or unsolicited could be tricky.
– One example given is that in the popular crowdsourced video competitions, if someone mentioned an off-label use that will be considered SOLICITED.
– Likewise, reviews by bloggers could be considered solicited if information is provided by the company.

9. Keep a record of all communications.

In short:
Explicit request. Private response. Response must be: FASAD (pronounced “facade”)
* Focused
* Accurate
* Scientific
* Appropriate
* Documented

More information from other sources.

Translating the FDA’s draft guidance

Legal overview

Corporate Law: FDA Proposes Social Media Guidance on Off-Label Drug Use

Positive view from pharma marketing

ePharma Rx: My Pollyanna View of Recent FDA Guidance (Wendy Blackburn, Tuesday, January 10, 2012):

Small selection of important views & concerns

Storify: Fabio Gratton: FDA Guidance and Social Media:

FDA Issues Draft Guidance on Responding to Unsolicited Requests for Off-Label Information:

FDA Guidance on Responding to Unsolicited Requests for Off-Label Information Via Social Media:

FDA Guidance on Off-Label Unsolicited Requests:

WEB EXCLUSIVE: FDA says “Pharma, guide thyself”

WEB EXCLUSIVE: Pharmas must step up and lead on off-label, online communications:

The FDA’s First Social Media Guideline: Off-Label Is On The Mark

RADAR: Libraries, Women, Anti-Resumes, & Social Business … via Slideshare

I’ve already said how much I like Ned Potter’s work. He did this lovely slide presentation about the importance of libraries nine months ago, but it has at last ended up on the Slideshare homepage, bringing it fresh life and awareness. I think I’ve already posted it in here, but it is worth looking at twice. Even better, he’s made it open source and you can download it. Go for it!

The Time for Libraries is NOW!


Janice Fraser did this powerful slidedeck on gender bias in technology and design. Even better, she included tips at the end for how to deal with bias, and how to start changing the inside of your own mind. Being a woman and having started with artificial intelligence in grad school, shifting through tech support, and now in emerging technologies, I could tell you stories. Lots of stories. Basically, though, the picture she paints is accurate, mild, and quite politely and delicately framed. If anything, it understates the situation.

Run the World, Girls


I’ve been collecting information for months about social media and employment, both job posting and job hunting. I haven’t had the time to assemble it coherently, but this leaped out at me. Immediately, I had a mental flashback to during one of the big science and social media meetings earlier this year, I think perhaps Science Online or Science Online London, when a frequently repeated meme was, “If you don’t have a blog, you don’t have a resume.” I first noticed this via a tweet from @Bora Zivkovic. I’ve been sharing that with young librarians who are seeking employment or dusting off their resumes, and it primed the pump for me to mentally red-flag this next presentation as significant. Important might be more in the sense of provocative than what you would choose to do, however there are more and more examples of creative, clever uses of social media / transmedia / web to create innovative alternatives to the traditional resume. At the absolutely minimum you should view this and give serious thought to how you think of yourself and how you portray yourself in public spaces. Of course, it didn’t hurt my liking at all that he lists as one of his superpowers that he has read 67 books in the previous year. ;) Librarians like that.

My ANTI-Resume Manifesto by David Crandall


From the individual to the enterprise. If blog equals resume at the personal level, what do think this means at the organizational level? Oh. However, there are entirely different strategies required when trying to use social media as an enterprise or institution, largely related to collaboration and coordination of messages and effort. I’ve tracked this issue for a few years now, collected lots of materials and links about best practices, sit on committees, and so forth. I don’t recall ever before seeing such a clean, terse, well-crafted overview of the main issues.

Social Business Planning, from Edelman Insights by David Armano & Mike Kuczkowski

Making It Happen: Social Media & Social Learning for Healthcare

Today, I was one of the speakers for the first Making it Happen: Achieving Measurable Results Through Education. I’ve been preparing like crazy for days, fleshing out my thoughts and notes, grabbing screenshots I didn’t use for a slide deck I probably should have made but didn’t. Halfway through I came up with this crazy idea of trying to show people concepts about social media and online collaborative technologies by using them for the presentation. I am not at ALL sure this was a wise idea, but it was a creative effort and a good learning experience (at least for me). Lesson One: Find out what sort of tech will be available for presenting before designing the presentation. I should have remembered that.

Part one was the mindmap. I made a mindmap that had a lot of content in it, knowing full well that I would not be using most of it for the actual event, but that it would be a resource for the audience to come back to on their own if they wish to explore further. Of course, I hope they will want to explore some of the resources. I studded the mindmap with actual links, for for those who go browser through, look for the little round dots at the end of the lines. The dark dots are external links, the light dots mean click for more details. This is a small snapshot of the mindmap, too small to read. If you click on the image, it will take you to Flickr for the full unpacked mindmap (at least the version there was when I made the image, but I keep updating it), but the image doesn’t have interactive links. For those, click on the link under the picture, but I learned today during the presentation you don’t want to use Internet Explorer, and should probably use either Firefox or Google Chrome as the web browser.

Mindmap: Social Media & Social Learning for Healthcare
This map is available here:

One of the things I wanted to do was to show people some of the other social media or collaboration tools that are available. I couldn’t possibly show very many, but I could show some very different examples to give a sense of the range. Mindmeister was what I used for the mindmap, and I emphasized that you can use this collaboratively, with multiple people editing and revising. I also like the range of filetypes for output and export, as well as the interactivity.

As I skimmed through a high level overview of the content in the mindmap, I had plugged in a few links to other types of tools that would support key concepts. For example, I used Prezi to highlight some of the concepts in the discussion about the recent meme on the “higher education bubble.” Again, what I show here is a screenshot in Flickr, with the link to the interactive Prezi immediately below.

Prezi: The Bubble
Prezi: The Bubble:

There were other things I wanted to show folks there, but there wasn’t time. I wanted to show them this video by John King about the context that shaped higher education, how it has changed, and some of the shaped higher ed might begin to take based on current contexts.

John L. King: Librarianship, Now and in the Future

I wanted to whip out to this older slideshow of mine that is mostly screenshots of examples of how folks were using social media for education.

Social Media in Education, A Family Photo Album

Instead, we talked a bit about last week’s new Pew Report, the Social Life of Health Information, 2010, and then I whipped over to the section on Personal Learning Networks, where I spent a chunk of time talking about #HCSM, which is absolutely one of my top personal learning network spaces, with incredible content and people. Again, I wanted to show them this the overview from last year.

Lessons Learned in Health Care Social Media, 2010

But I really wanted to show Storify, and there is so much excellent #HCSM content in Storify, mostly thanks to @DocForeman. I wanted to show them this from last week:
Engaging patients with #hcsm: Let’s do more of what we’re already doing right.

but I was having a little trouble with the presentation computer and clicked on something else from last March, which is also pretty good:
Tracking Patient Satisfaction and Clinical Outcomes.

I wish I’d had more time to show them some of the amazing range of tools available for collaboration, but I showed them a partial list in the mindmap, and spent some time talking about best practices, pros and cons, and made a little clever (I thought) parody of Ramon Santiago y Cajal’s first chapter in his book for young investigators.

Beginner’s Traps:

RSC: “Undue admiration of authority”
Me: Undue admiration of the self-proclaimed expert.

Trap 2:
RSC: “The most important problems are already solved.”
Me: The most interesting new tech to try are too hard.

Trap 3:
RSC: “Preoccupation with applied science.”
Me: Preoccupation with being serious.

Trap 4:
RSC: “Perceived lack of ability”.
Me: Ditto.