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Crowdsourcing Our Health – Using Social Media to Educate and Unite the Public

“Social media on the Internet are empowering, engaging, and educating consumers and providers in health care.  This movement, known as Health 2.0, can be defined as: the use of social software and its ability to promote collaboration between patients, their caregivers, medical professionals, and other stakeholders in health.”

— Jane Sarasohn-Kahn, M.A., M.H.S.A, THINK-Health

Three different things happened to me last week that got me thinking about this concept of Health 2.0.  First, my colleague Jacque Brown started participating in the weekly Healthcomm chats on Twitter, I attended a meeting with the Center for Health Transformation, and I read this fantastic post by Ben Parr on Mashable.

Americans are increasingly relying on the Internet to find health information and connect with other people in similar situations.  According to the April

Source: iCrossing, How America Searches: Health and Wellness

Source: iCrossing, How America Searches: Health and Wellness

2008, “The Wisdom of Patients: Healthcare Meets Online Social Media,” report, more than 60% of Americans have used the Internet to find health information, and as of January 2008, the Internet rivaled physicians as the leading source for health information.  The 2008 Edelman Trust Barometer also determined that people tend to trust “a person like me” more than authority figures from business, government, and media.

Combine this with the fact that research shows that a stable and supportive social network improves health outcomes for people with a wide range of conditions, from the common cold to cancer, and the potential for social media to fundamentally change how we view our healthcare, how we view our health, is phenomenal.

Social media is bridging the gap between health and healthcare.  Imagine a world where your doctor calls you to make sure everything is ok after noticing an increase in the number of your Facebook status updates where you said you have a headache.  What if you could screen new doctors by viewing past surgeries of theirs on YouTube or by reading their blogs?  What if your entire medical history was available, securely, online?   Imagine being able to easily track, monitor, and research every illness, pain, cold, and headache you’ve ever had – you think we’d come across some interesting (and possibly life-saving) trends??

Through websites like Google Health, WebMD, and PatientsLikeMe, initiatives like Twit2Fit and the weekly HealthComm chats, and many other examples, we’re already starting to realize some of these benefits.  But to truly transform our country’s health, our government needs to get involved as well.

The Department of Health and Human Services’ new Center for New Media is a good start, but it’s but one small step toward Health 2.0.  Before we can truly realize Health 2.0 (can’t we think of term that doesn’t use the “2.0” moniker?), there are several very valid issues, along with several perceived barriers.

  • Privacy – The Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule provides federal protections for personal health information; However, personal health records (PHRs) shared outside of covered entities online are not protected by HIPAA.
  • Security – 13% of respondents to a Healthcare Information and Management Systems Society (HIMSS) survey revealed their facility had experienced a data breach.
  • AccessibilitySection 508 requires that Federal agencies’ electronic and information technology is accessible to people with disabilities.
  • Resistance to Change – Healthcare is perhaps the oldest, largest, and most complex institution in the United States, and stakeholders from every aspect of the industry will have to adapt to a new way of doing business.

All very real issues, right?  However, as much as some people would like us to believe, these issues are NOT barriers to Health 2.0.  Our Government can and has overcome these issues before, but for it to continue, we must address these issues first. This is what Jacque likes to call the four stages of Health 2.0 denial.

  1. This is an invasion of privacy! – However, the “entities” mentioned above are ensuring HIPAA compliance and the caretakers who will more than likely be on the receiving end of PHR sharing already know of an individual’s medical conditions. Google has taken additional steps to ensure privacy by only making links available through the direct email address through which the notification was sent and making the links expire after 30 days.
  2. What about information security?!? – If the intelligence community can use social media to communicate and collaborate about our nation’s intelligence and we’re comfortable with our entire banking records now available online, I think we can figure out how to make our health records accessible AND secure.
  3. What about people who don’t have the internet? – 80% of adults in the US have mobile phones, and some countries are already piloting government-provided phones for health reasons.
  4. But this is just plain scary – When I first logged on to Google Health, I was overwhelmed at seeing my mortality displayed in front of me. Likewise, physicians and other groups are used to doing things the way they feel comfortable. Even if we do see the value in social media, it’s a transformational change that is going to take time and both formal and informal support to embrace.

Health 2.0 isn’t going to happen overnight – it’s going to take the time, dedication, resources, and cooperation of the general public, our government, Big Pharma, insurance providers, first responders, caregivers, and many others to make it happen.

If you’re interested in learning more about Health 2.0, there are much more qualified people than me who are out there making this a reality – I’m just someone who’s keenly interested in doing what I can to make it happen.

Additional Resources:

There are MANY more – the links above are simply my go-to resources.  If you have more resources, please add them here in the comments so that others may benefit too!

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Social Media is Scary – How to Address Middle Managers

Part 3 in a series of posts responding to my original post, “Social Media is Scary

So, what can you do to address the myriad reasons for social media being scary?  This is the third (the first one addressed the junior employee, and the second addressed senior leadership) of four blog posts tackling each of the demographics that I brought up in the original posts, one by one and illustrate how I handle the “social media is scary” line.  The third group is the middle manager and project manager –

For managers – “So, how much time is my staff going to be spending blogging/reading blogs rather than doing actual work?  If my staff have questions about their project, their career, or their work environment, I want them coming to me, not blogging about it for the whole world to see.  I’ve got an MBA and have been with the organization for five years – why would I put my work out there for people to change and mess up?”

Ah, yes, time for the middle managers and project managers.  In my experience, this is the stakeholder group that is most skeptical, opposed, and confused about social media.  They seemingly have the most to lose – social media allows senior leadership to interact directly with their workforce (why go to my manager if I can talk directly to the big guy?) and they’re directly responsible for ensuring that the “work gets done” so while time spent reading blogs might be beneficial over the long term, it doesn’t directly benefit the project at hand.   The typical project manager is interested first in achieving the goals of the project, and the typical middle manager is interested in balancing the needs of his or her staff, plus doing what senior leadership asks, plus building their own career.  For this group, social media is at best, another activity competing for their time, and at worst, a severe inhibitor to achieving the mission.

To get the middle manager or project manager on board with social media, you have to show them two things:

  1. Social media will save them time
  2. Social media help them build their business and/or grow their team

While one might be tempted to launch into presentations about how social media can help them communicate with their staff or to collaborate more efficiently, they aren’t going to care unless you can demonstrate to them how these tools will help them do one of the above.

When talking with a middle manager or project manager, I’ll typically start by focusing on the tools themselves, rather than on the overarching strategies, like I would do with senior leadership.  Show them how the tools can help them save time.  Show them how they can use del.icio.us so that they can use their bookmarks no matter where they’re at, and despite the number of “blue screens of death” they see.  Social bookmarking to save time is of much more importance to them than being able to share their bookmarks with others.  Show them an example where a wiki has been used to eliminate 43 MS Word versions of a white paper or some other document.  Show them how an internal blog can be used to keep team members up to date on their project instead of having weekly in-person team meetings.

Once they have that foundation in how the tools work, and how they can be used to save time and to build their business/team, THEN they’ll start getting interested in the broader view of social media.  “Hey Steve – first, thanks so much for getting me set up on del.icio.us.  It really saved me when my laptop died the other day!  But what I really wanted to talk to talk to you about is the sharing aspect of it.  Since my bookmarks are just available online, couldn’t I just tag things and then my team would be able to see what I’ve tagged?”

Middle managers and project managers deal much more in the practical than in the theoretical.  An understanding of this very fundamental perspective is critical to showing middle managers and project managers that social media isn’t scary – it’s a critical time-saver that can be used in myriad different ways.

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Social Media is Scary – How to Address Junior Employees

On one of my recent posts, Social Media is Scary, Rick posed some pretty valid questions that essentially boiled down to “yeah, social media is scary, but now what?  What can I do to address these concerns?”  I thought this was a great follow-up question that I promised to answer in a future post.

So, what can you do to address the myriad reasons for social media being scary?  In my next four blog posts, I’ll tackle each of the demographics that I brought up in the original posts one by one and illustrate how I handle the “social media is scary” line.  Our first group is the Junior Employee –

For junior employees – “Yeah, that’s great that I can start a blog that everyone in the organization can read, but what will I say?  What if my grammar is wrong or I spell something wrong – will people think I can’t write?  What if I disagree with something that my manager says?  What if I write too much and my boss wonders why I wasn’t working?  I don’t know – I’ll have to really think about it.”

For junior employees, it’s all about tapping into their entrepreneurial spirit.  Show them how they can use their organization’s internal blogs, wiki, bookmarks, etc. to identify their niche and to promote it.  Show them how this voice that they now have can be used to advance their own career.

Image Courtesy of Flickr user GroovyGuru

Image Courtesy of Flickr user GroovyGuru

Junior employees lost in a mass of thousands – they’re often anonymous pluggers who are told that they have to “put in their time.”  With the proliferation of social media both inside and outside the organization, this phrase is now more of an excuse than a reason.  If you’re a junior employee who is sick and tired of being the gopher, of being tasked with doing nothing but web research, of not being invited to strategy meetings, DO something about it.  Do your job well and stop whining about the lack of opportunities and create your own.  You now have a voice.  You now have a platform with which you can demonstrate your skills and expertise and create your own opportunities.

I’ve used my own experience as a case study here.  When I first started pushing the words “social media” around my traditionally conservative firm, I started small.  I pulled together some basic briefings and white papers, but never really got traction beyond my core team.  Once we deployed internal blogs, a wiki, and forums, that’s when my work internally with social media really took off.  I blogged every chance I got.  I went in and created dozens of wiki pages on every social media tool I found.  I commented on everyone’s blogs.  I took every opportunity I could to get my name out there associated with social media, Web 2.0, New Media and anything else that was related to those terms.  As I mentioned in one of my previous posts, when I first started down this path, I was working 9-5 AND 5-9.  I had to continue doing my actual job and then come home and work my tail off on this.  Remember that no one is going to care what you have to say if you’re getting negative performance reviews because you’re neglecting your actual job in favor of something else.

Now, anytime anyone in my company searches the terms “social media” or “Web 2.0” or “blog” on our Intranet, my name pops up.  What made me one of Booz Allen’s social media leads wasn’t some new title or promotion or org chart change – it was simply a matter of my putting my name out there along with my thoughts, opinions, and ideas and letting everyone judge me based on that.  That first blog entry WAS terrifying, but you know what – I decided that I’d have to take that first step at some point, why not do it on something that I feel very confident about?

So, when a junior employee tells me that social media is scary, all I have to show them the benefits of social media, of how you can use these tools to position yourself how you want to be seen and where you want your career to go.  I tell all of my mentees to find something, find anything, that they really enjoy and that they can somehow tie into the business of our organization.  You’re in grad school studying Global Communication with a specialization in Middle Eastern Studies?  Perfect!  Go start a blog on that.  Go create wiki pages that examine the impact of the Internet in Iran.  Start a community of all others who are interested in learning more about that topic.  Just identify your niche, and get out there already!  If you’re a junior employee reading this and you’re STILL looking for motivation, then watch this spectacular video from last year’s Web 2.0 Expo in New York.  Listen to Gary’s speech and then try to tell me that you’re not ready to go kill it!

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Why Social Media is Scary

As one of my company’s social media leads, I’ve had the opportunity to speak with a wide range of people about social media.  From our most senior VPs to senior executives within the government to our summer interns, every group has their own set of questions, concerns, and pre-conceived notions about social media and what it means for them.  Over time though, I’ve realized that they all one thing in common.  They could all agree on one thing.

Social media is scary.

Let me tell you why.  Businesses and our government are structured in a very hierarchical way – everyone is part of an org chart, everyone has a boss, and everyone is working to get to the next level.  Why?  Because inevitably, the next level brings more pay, more power, more respect, and more influence.  In the current organizational structure, everyone’s role is nicely identified on the org chart and with that, there is a structured way to act.  Raise your hand if you’ve ever said or have been told something like, “you can’t contact him directly – get in touch with your manager first,” or “draft an email for me to send to him,” or even better, “talk to “Public Affairs and Legal to get that approved before sending it out.”

The problem with this structure is that social media renders these traditional roles and responsibilities obsolete.  It introduces unpredictability and opportunity, unauthorized emails and tremendous insights, inappropriate language and humor.  Social media gives everyone a voice, whether they want it or not.

That’s a scary concept.

  • For junior employees – “Yeah, that’s great that I can start a blog that everyone in the organization can read, but what will I say?  What if my grammar is wrong or I spell something wrong – will people think I can’t write?  What if I disagree with something that my manager says?  What if I write too much and my boss wonders why I wasn’t working?  I don’t know – I’ll have to really think about it.”
  • For developers, programmers and other IT staff – “Ummm, I became an IT programmer because I hate people.  I don’t like speaking out, and really enjoy just coding and sticking to myself.  Now, you’re making me blog about my work?  I have to post my code to a wiki?  But, I can’t – it’s not ready for prime time yet.  I can’t just post draft content out there – let me get my manager to review this first.”
  • For managers – “So, how much time is my staff going to be spending blogging/reading blogs rather than doing actual work?  If my staff have questions about their project, their career, or their work environment, I want them coming to me, not blogging about it for the whole world to see.  I’ve got an MBA and have been with the organization for five years – why would I put my work out there for people to change and mess up?”
  • For senior leadership – “What happens when people start using these platforms to just complain about everything?  Why would I want to give everyone a place to whine about every little thing that’s bothering them?  I can’t possibly keep up with every comment, question, and suggestion that goes up – I don’t have the time to do that!”

At the heart of all these questions is an underlying fear of the unexpected. People now have a voice, a freedom to say what they want and talk to whomever they want.

In the traditional business culture of org charts, everyone is relegated to their role and everyone lives by that – it is very easy (and fits nicely onto a PowerPoint slide).  Before we had social media at my organization, if we got an email from someone we didn’t know, all we had to go on was their directory listing – “ohhh, I just got an email from one of our Principals – I’ll have to ask my manager if it’s ok to respond directly to them or not.”  Now, I can click on anyone’s name and see not only their entire bio and a picture, but also their entire history of contributed intellectual capital(IC).  I can see their blog postings, their wiki edits, their bookmarks, and their skillset.  I’ve gotten this a lot lately as people within my organization have tried to say that they’re social media “experts” yet I can click on their name and find out they haven’t blogged, they’ve made one wiki edit, and they’ve only logged into our social media platform once.  Really?  You’re a social media “expert?”  Thanks, but I’ll pass and contact the guy in San Diego who has been editing the wiki like a fiend, adding great IC on social media.

Social media allows people to easily subvert the traditional organizational hierarchy.  Whereas that title or degree that followed your name used to be all the authority you needed, you’re now being judged by what, if anything, you’ve contributed.  I’ve run into quite a few senior PhDs who turned out to be brilliant and just as many who left me asking how they got through undergrad – I now have more information at my disposal to make my own determination before I ever even meet them.  This transparency scares people because they’re now forced to show their skills and demonstrate their expertise.

Social media gives employees an unprecedented ability to use their voice to gain credibility, influence, and power within the organization – for better or for worse.  Junior employees can quickly become valued and respected or suspended and reprimanded members of the organization because they now have a voice.  Middle managers can lose their power and credibility if they don’t use their voice.  Senior leaders can lose total control of their organization if they don’t listen to these voices.

No matter what level you’re at, social media can be very scary.  On the other hand, it can be an incredible opportunity.  Will you face your fears and take advantage of the opportunity or hide from the fear it instills?

*Image Courtesy of Flickr user Ack Ook*

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