DIA Annual Meeting Day 1: My Experience

My first stop was the Alliance for Clinical Research Excellence and Safety (ACRES) meeting on Sunday, before the main conference kicked off on Monday. I hesitate to characterize what ACRES is trying to accomplish because it is big. Really Big. I'm not sure I can communicate it properly. I was at the meeting because of my association with the conference company iiBIG, which is working with ACRES to host a conference in Boston on 01-02 October 2015. This meeting, called SYNERGY, is going to be a working meeting where people actually form groups and work on the issues ACRES hopes to improve. You can learn more about the meeting and sign up here. By the way, I am also working with iiBIG to bring the Clinical Study Teamwork conference to Raleigh on 19-20 November 2015. More on that later.

Two sessions were available Monday morning before the plenary and keynote. The session I attended were all about social media, naturally, and... I can't lie. Two of the seven speakers were active on Twitter. Twitter isn't the be all and end all of social media, I understand that, but if you aren't eating any of your own dog food there's a good chance you don't know from dogs. One speaker offered to give us a hashtag for the session topic, at the end of the session. I don't want to be mean, but this is what happened.

There was one Q&A interchange between someone from GSK whose name I did not get and one of the speakers, Brian David Edwards, MD, MRCP, that was at a whole different level. They brought up that the kind of information, particularly pharmicovigilance information, that was going to be collected through social media was an entirely different kind of information, and an entirely different kind of relationship. Characterizing every report as a "risk" or an "adverse event" fails to distinguish the subtleties of how communication works.

Also, if we are trying to shoehorn the communication into some replacement for a MedWatch form, it misses the entire fact that this is an interactive medium. We can ask questions and get more education about the patient experience. We could, if regulations permitted, provide education. We have opportunities to improve drug safety for which we currently have no pathways and no language. Dr. Edwards stated that this is part of what he's trying to develop through his work with ACRES.

Someone asked one of the speakers about digital clinical trials and his response was to point out that that is very cart before the horse. We (these are my words) aren't engaging people at all and then we want them to do something for us? Pharma is well on it's way (again, my words) to being the assholes stomping around on social media. We had really better not go further down that road without a course correction.

Okay, Sweta Chakraborty, PhD. She's the Associate Director of the Institute on Science for Global Policy, she can be found on Twitter, and... WOW! I tried to find a YouTube of her speaking and I'm sorry I couldn't locate one. She would like to bring Cognitive Behavioral Science to pharma communications, which means addressing the patient where they are. I wish I could quote what she had to say about TV commercials, but in short they don't address people. Mass communication inherently loses communication value (my words for what she was saying). She explained that the patient comes into the situation with their own "values" and "levels of trust" and if they aren't engaged through those lenses, the information provided to them will be meaningless. It can even be counterproductive.

Now let's talk about Paul Grant, on Twitter here. He presented an amazing engagement plan from a social media engagement project. Here's an article all about it. You should read that article.

I've never made a chart that complicated, but that is exactly what we do at my company. We think about what our goals are, and then we write out what kind of engagement we are going to do on all the channels where the brand is. Is the brand going to be on Twitter? What are we going to do if someone follows up? Some brands are really chummy and they talk to you when you follow them. They might even follow you back. For other brands that is completely the wrong thing. Add in the complications of pharma regulations and you have to work all that out before you say a peep in public.

So that's enough Very Serious Thinking about pharma and social media, time to hit the vendor floor. As usual, the vendor floor at DIA is completely wild. Someone at lunch called it "intimidating." It actually disappears over the horizon of this picture. It's that big.

My lunch table ended up being a majority of North Carolina people. It was excellent to meet everyone, but of course it was most excellent to meet people who had sat in an airplane for an hour before flying from North Carolina and gloat about having chosen the train. (Not going to the airport, worth a few bucks. Putting your feet up and watching the corn fields roll by: priceless.)

After lunch was the plenary session, featuring a choir called Selected of God.

They were quite awesome and I recorded a 15 second Instagram snippet here.

And then the keynote speaker was futurist Daniel Burrus. Look, it's easy to make fun. What he has to say is startlingly obvious, but isn't every really good business idea? Having been a business owner for about three years now, and watching and interacting with a lot of other business owners in that time, I'm starting to think that people have great ideas for business and then succeed in spite of themselves rather than because of themselves. So I can't knock obvious when we all really need to have the obvious pointed out to us. What he had to say seemed to follow the outline of his latest book pretty closely, as described on Amazon. (Disclosure: I might have that link monetized. I haven't linked to Amazon in so long that I can't remember.)

And then some people went to an awesome party, as I see on Twitter, and I sat down and wrote this. There will be a Day 2 but I'm not sure it will be as promptly written because I'm RSVP'ed for a Tuesday party.

Day 2 continues here.

---

This post by CRP Social Media President Mary K.D. D'Rozario was first published at http://www.crplink.com/blog.

10 Reasons I Love Yik Yak (and none are about marketing)

1. Yik Yak changes when I drive across town. This is the exact opposite of the globalization of everything else on the internet. You know what is cool about Instagram? I can interact with people at 2am because somewhere in the world it is time to photograph your cat and it doesn't matter what language either of us speak. Yik Yak is the exact opposite. Yik Yak makes it so where you are and having the social skills to interact with the person down the street actually matters to your online experience. Yik Yak primarily allows you to interact with people within 1.5 miles of your current location. It also allows you to set up a "basecamp" location where you can continue to interact. For example, college students can set up their college as base camp and continue to have conversation with classmates while they are home for the summer. Also, if you participate in a conversation, you can continue to participate in that conversation even though you have left the area. I am still in a conversation in New York that started a week ago.

Lastly, you can "peek" on other areas, but not participate. Yik Yak sets up suggested peeks, such as the location of a major sporting event. You can also save your own peek - I have my hometown saved as a peek.

2. It isn't as evil as you would think. Total anonymity and the whole world should go to hell, right? That actually is not how the internet works. Evil in social media is not linear. When there is a little bit of moderation, people start to interact with authority and the evil goes up, not down. It takes heavy moderation to overcome this. Yik Yak has self-moderation: once a comment has a net 5 down-votes it is actually deleted. Also, Yik Yak has started some slight moderation of comments, such as those with direct threats. Still, Yik Yak is far less evil than the comments on the (moderated) website from my local TV news station.

3. There is no whining in social media. We already knew this, but on Yik Yak a net of 5 down votes and it is gone.

4. Your trolling will be graded. Again, we already knew this was how social media worked. In fact, I once belonged to a forum that developed a numerical score for grading trolls with points for originality, etc. On Yik Yak, anonymity means the reader can't be intimidated. Plus all they need to do is swipe left. This goes to point number 2.

5. You win by having a social network beyond Yik Yak. Remember when you were in grade school and you went away to summer camp and then came home with a good joke no one else had heard? Or your Uncle Paul came home from college and told it to you, same thing. That doesn't work on the internet in general  because as soon as you tell a joke it is world-wide. But it does work on Yik Yak. So you can see jokes and games spread organically and geographically, just like happened before the internet. For this to work, the joke or game has to be specific to the Yik Yak interface.

6. Adults can actually talk to teenagers. Okay this sort of is about marketing. Who in marketing wouldn't like to know what teenagers actually think? The saying is that on the internet no one knows that you're a dog. On Yik Yak, no one knows that you are 30.

7. Sometimes Yik Yak actually is news. This works best for places with high Yik Yak usage like college campuses. On a college campus it can be so granular that you can find out a professor is running late to class. In my neighborhood, I found out that the traffic was bad because a funeral for a celebrity was occurring at the church down the street.

8. Highway rest stops are more fun. Don't you ever wonder where everyone is going and what they are up to?

9. You can see people learning the norms of the community. Usually a social media conversation is for the audience. Even if your conversational partner is convinced, there is no way they are going to back down in public. But on Yik Yak, I've seen people actually change their minds in public. When I went into MBA school I gave that as the leadership skill I most admired, so yes, I love to see that.

10. No one has figured out how to exploit it. You would have be very beloved by the community to post an advertisement, otherwise you would have your net 5 down votes in less than a minute. I think I may have seen an advertising post once, at an airport. (If you have seen an ad, please let me know or send me a screen shot.) Even Business Insider merely posted about how to use it, not how to market on it, and the indomitable Gary Vaynerchuk said "you don't know how to do it right" meaning him. As he says, it would take being "very authentic" and being a "practitioner," that is, truly being a community member. It could happen.

UPDATE! Check out this blog post about successful marketing on YikYak!

----

This post by CRP Social Media President Mary K.D. D'Rozario originally posted at http://www.crplink.com/blog. 

Challenging Randomized Clinical Trial Supremacy: Right to Try Legislation

A couple of weeks ago I spoke for the RTP SoCRA chapter on clinical research blinding history and current issues in clinical research blinding. You can find the slide deck here. The blinded, randomized, placebo-controlled trial, is relatively new, really only gelling into it's current form in the 1980s. It seems set in in stone, but it really recent. And the supremacy of the RTC was challenged almost from day one by the AIDS crisis. You can read more about that in And The Band Played On.

Today's challenges come from the Ebola crisis raising ethical issues about what real community consent means, an issue that has been simmering for all developing-world clinical trials, and from USA patients unsatisfied with the idea that a long testing process is necessary to protect public health, especially for terminally ill patients.

This has led to the development of Right to Try legislation at the state level. Currently 19 states have active Right to Try laws. These laws generally state that a terminally ill person can try a medication (or medical device) that has not been FDA approved if it has completed some level of testing, such as Phase I. They also generally state that the person or their insurance company can pay for the product, and that everyone involved is protected from liability. Some of them have additional restrictions such as that a clinical trial for their condition cannot be available within 100 miles of their address (Alabama).

As we have seen with other recent legislation on other issues, these laws challenge federal control. The challenge to the FDAs control of products they have not approved is obvious, but in the liability protections other challenges are necessary, including protecting treating physicians from sanction.

With Right to Try legislation, there are also questions about whether it is significantly different from the FDA's Compassionate Use program (supporters say Right to Try is more streamlined), and whether there are ethical issues with people who can pay for the product essentially "jumping the line" and possibly diverting resources from the product being developed through to FDA approval and widespread access. Again, this latter issue does not seem to be significantly different from concerns about Compassionate Use.

RAPS, the Regulatory Affairs Professionals Society, keeps a complete list of all active and draft laws. It's a fantastic resource, available here.

Speech at RTP 180: Social Media Listening and Build Your Own Career

RTP 180 is a TED-style monthly speaker series at The RTP Foundation. The June topic was social media, and I joined a fantastic line-up of speakers to share a five-minute message on social media. Every presenter had an element of "build your own career" to their story. Matthew Royce of Forsythe Tech spoke on the science of what we know about effective social media strategies, Amanda Peralta of Duke spoke about channels, Chris Cohen of Bands to Fans talked about pitching Huey Lewis and the News on Social Media and filling a life-long dream, Chris Rice of Carolina Brewery spoke about All About Beers and becoming a national brand, and Justin Miller of WedPics talked about pivoting into an unexpected success.

And then there was me, doing my best to be inspirational about the possibilities that still exist in social media to make your own career, and what I think is the foundation social media skill for that route: listening. We are in a loud 50/50 country and listening is a skill that brings in opportunities. There are tons of little corners of the internet left that don't have a professional listener and companies that need that intelligence. This is more-or-less what I had to say, or you can click the YouTube link:

You are probably familiar with the barbell model of social media conversation reported by the Pew Research Foundation in February of this year. Conversations tend to group into opposing starbursts with rare connecting threads: Republican and Democrat, ACA and Obamacare, Gun Control and Gun Safety.

Curiosity drives listening. I cannot begin to emphasis enough the power of curiosity and what it means to be able to follow those connecting threads. Curiosity is a vital part of your humanity and it is important to career success, but it is essential to taking advantage of the opportunities available in social media today.

And what opportunities! More than 80% of companies say they want to expand their social media presence, but less than 8% of companies say the can readily identify the personnel they can hire as social media managers.  I have used the power of curiosity to take advantage of this mismatch: Over the last few years I became an expert at watching a certain set of social media conversations. CRP now performs social media management for companies in health care and life science.

In the employment section, when I describe the ideal social media manager I ask for applicants with multicultural awareness. Multicultural tends to mean multiracial, and while that is part of it, what I really mean is that I need someone who can understand the threads linking different audiences and different conversations.

My assistant calls this speech the "get your head out of your ass" speech. When I explain how important this is people ask me, "Really? There are really people who cannot follow a conversation across different groups." Yes, really. There are people who have no idea what are the key words that sooth or set off the 50% on the other side of the fence.  These people can't be allowed to speak for any company. This also explains why analytics is not the answer to every question. You have to have someone who understands the data. Larger companies are hiring "internet anthropologists." Smaller companies just need someone who is truly following the conversation.

Can you develop the skills to be a specialist in how different communities talk about the same topic? Can you be that person who can truly follow the conversation? If you can do that, just look at the people who were on the stage.  There are jobs for you, there is success out there for you.

Can you be curious? People ask me about the skills of curiosity. They may not realize that is what they are asking.  The question often sounds like, "How do I find who to read?"

The answer starts with observation. Anything you can do to key up your powers of observation: Write in a journal.  In meetings at work talk less and write down everything. Instagram has turned everyone into a better observer: taking photographs is a powerful observation tool.  Here's one, try live-drawing the plot of the next TV show you watch.

At this point in my speech Karen Kornegay tweeted a link to the work of Perrin Ireland, who is exactly the person who inspired me to start live drawing more of life. She is an artist; I live-draw just to pay closer attention.

Those 80%+ companies that are looking to expand their social media need is listening, whether they know it or not. Making noise is easy. We have more messages than the entire population could possibly listen to. If messaging continues to grow at the current rate, there will literally be more information being put out than the population can absorb. One social media manager, looking at the statistics, suggested in jest that we get people to stop brushing their teeth so there might be a few extra minutes a day to absorb messaging.

The question in social media isn’t when the tree falls, does it make a sound: in our crowded world nothing happens that someone doesn't see. But how does it affect the forest? Listening means knowing the conversation well enough that you didn't butcher that tree for naught, but that you could make an impact on the existing conversation. Bonus skills for being able to measure the impact.  This is social media value, and you only get it from listening.

So it should be obvious that it drives me insane when someone wants to brag about their lack of curiosity. Probably every other successful social media manager feels the same way. You compare Christopher Columbus, who saw a blank spot on the map and risked his life and his reputation on filling in that map.

The blank spots on our maps are so easy to fill in comparison- we have the internet!

And yet I have heard business owners say, “I don’t care what other people think.” Maybe that is super brave, it's probably narcissistic, but wouldn't you be better off knowing what is on the map?

I see business owners that don't want to know anything about what one political group or another is thinking or saying.  In a 50/50 country where 50% of your customers do care and care very much! I recently had a business owner who was trying to sell an expensive lifestyle product diss Kim Kardashian. Dude, you need to know exactly what Kim Kardashian does.  It is now your life mission to know. It is not anything to brag about blank spots on your map except stupid.

And at the end of the day it is even worse than that. Because it's great that social media can enhance our careers or be our careers, but social media is so much more than that.  It is a landscape and an architecture with the unique opportunity for people to be heard, but only if someone is there to listen.

After saying all of that there was a Q & A about totally different things. We got into some technical issues about current trends in pharma and HR. Businesses are way behind in terms of social media policies that address the realities of their regulatory responsibilities and the realities of their employees lives. Businesses are way behind in social media training, partly because of the thought that the schools and colleges might have done that and it didn't happen.

CRP provides that personnel training, as well as vision for how your employees can take advantage of the internal and external social media opportunities that intersect with their responsibilities at your company.

Meanwhile, here's the video of RTP 180.  It starts with set up, the speeches start at the one hour mark:

Two Social Media Outcomes Practice Managers Are Excited About

Practice managers usually aren’t too excited to see me coming. Social media is one more task and one more risk on an overflowing plate. So I was thrilled to sit down with some practice managers and hear about the social media outcomes they were excited about: collecting actionable information about patient dissatisfaction and collecting positive patient stories that improve employee engagement. The setting was the Tri-State Healthcare Management Conference in Savannah, GA last week. Medical managers from North Carolina, South Carolina and Georgia gathered together to share best practices in coping with the drastic changes affecting practice management. For three days we learned together, ate together, and partied together. This is what I heard from these leaders in the practice management profession:

Being able to get actionable information from dissatisfied patients was a key value they got from social media. Aside from patient satisfaction scores and liability risks of unsatisfied patients, customer satisfaction is an outcome dear to most practice managers' hearts. Managers who reported getting information they could use to solve a patient satisfaction issue reported having two things on their side: 1) The practice had a monitored social media presence where patients could freely express themselves directly to the practice. The social media manager escalated satisfaction issues for resolution. 2) The practice had staff on social media who trusted them enough to resolve issues that they would report dissatisfaction complaints they saw in their own social media networks.

Practice managers were also excited that social media could elevate employee engagement. Healthcare employee dissatisfaction is high in the current environment. This dissatisfaction creates a stressful office environment that patients can feel- lower employee engagement directly relates to lower patient satisfaction and worse patient outcomes. Providing a portal for patients to waive their HIPAA privacy protections and tell their own stories increases employee engagement. It brings those positive experiences back to the office, including back office staff who may be particularly disconnected from the positive outcomes generated by the practice.

Obtaining these social media benefits requires investing in monitored social media and content management and in employee training that turns every employee into a social media asset for the practice.