Social Media for Market Research

I'm not often called on to do market research, but when it falls into my area of expertise, I'm all over it. Back when I first entered the technology field more than two decades ago, it meant being aware of who the right analysts were (e.g., Frost and Sullivan, Gartner, IDC, et cetera), and then talking to your marketing people to get access to the right research.  It also meant being aware of your own market, who your competitors were, and doing some digging.

But how would you find out who the competitors are in a market you don't know quickly?  And when you don't have access to the right market research, or even worse, when you are the first person doing that sort of in depth analysis?

The advent of social media makes some of this a lot easier.  Want to know who works for the competition? Find someone on twitter that you know works for them, and then traverse their links and their friends links. One of those clusters is likely to be a batch of co-workers.  There's a place where you can graph your linked in connections that I don't recall how to find, but what I do remember was that it was a quite accurate reflection of my employment and education history.

Want to know who your competitors are, or the competitors of another business?  Find them on linked in.  Then find past employees of the organization and then where they are now.  There's a pretty good chance (especially in specialized industries) that it will be a competitor. The more specialized the industry, the greater the chance of it being a close competitor.

Want to find out what your competitor is doing technology wise?  Have a look at the technology skills of their employees.  Do they know anything about technology X?  Go look.  How many people on twitter mention X in their profile?  How many followers do they have? What's their Klout score?

Want to find out how much of your market is using Java vs. .Net?  Search for those skills and then filter by companies in your network. Want to know where a competitor has offices?  Find out where their employees are.

How big is the company?  Easy for publicly held firms, just go check their 10-K.  But what about privately held companies?  Is that a 200 person company or a single person consultancy? Locate how many people list them in social media.  Find their Linked-In page and the answer is right there.  If they don't have one, find out how many are on social media, and compare that number to those of similar companies where you do know the size.

Looking at a potential location?  How many people in this city (or state or nation) have these skills?  The right query and filter will answer that for you.  An acquisition?  Same question, different filter.

There's an amazing amount of data in those links.  Some of it is hard and accurate, others fuzzy and gray.
Use it now while you can, because I'll guarantee that eventually you'll have to pay for it.  So get the value out of it while the getting is good.

And remember, anytime someone adds something new to your landscape, understand that there's always something of value that can likely be found underneath, above, inside, beside or behind it.  Even rocks deserve looking under.

Google-

I'm still not a big fan of Google+.  When I need to engage, I need to engage in as many places as possible.  G+ makes that extremely difficult for me.  I have to take extra steps to engage there.  Sure, I could hook up a set of tools and write all of my posts in G+, but then I'd need to switch away to access the other social networks where I have existing engagements to keep up with them.  I can't access them through G+.

Instead of making it easy for me to remain engaged with my already established social communities, they've decided that they want to own them.  But they, like me, aren't leaving the services that their own constituencies have already adopted.  Basically, it's like changing your phone number because you just changed phone companies.  Google Dudes/Dudettes ... how 20th century of you.

The other challenge I have with G+ is that because each plusser gets one and only one channel that I can see, I don't get to pick and choose which channel I want.  It's like being forced to watch Fox news because I also like to watch Bones.  That's a pretty steep price to pay.

On Twitter I have two channels.  One is very personal.  About 10 people see it.  The other is where I engage in my own advocacy for Health IT and change in the Healthcare system.  Some of my friends subscribe to both channels, and have chosen to.  But with Google Plus, I don't have the option of letting my readers pick which "Keith" channels they want to listen to.

I made a similar switch on Facebook not long ago.  Originally, I was on Facebook to connect with online friends and family from time to time.  Soon, my standards colleagues from around the world found me there.  I let one in, then another, then another ... and so on until I couldn't find the content that was the reason I was there in the first place.  So I "unfollowed" anyone not in my circle of friends, and created a new Facebook account for that other persona.  I then requested friendship with all the people I just "defriended" from the new account.  Having made that separation, I expanded my twitter tweets into that other Facebook space.

When I want to share something on G+, I feel like I'm back in high school.  It's not circles, but cliques.  I have reading cliques, and writing cliques.  What I read comes from one, what I write goes to another.  Something that is posted on G+ is stuck there.  Like Wes, I know the feedback I make is limited to the group that it is shared with, and sometimes I want to broaden the discussion.  I can reshare, but that's another click, and doesn't let those not on G+ get access to the discussion.

I'm glad that G+ released their API, and disappointed that it's still read-only.  I can only hope that Tweetdeck won't be too far behind with an update to support it even if it is just read-only right now.  At least then I can get back to one tool for monitoring all my social networks, instead of simply ignoring G+ most of the time.

My last complaint about G+ is being able to find good content.  It seems that people haven't yet figured out cliques well enough to enable meaningful sharing, and for some reason, G+ is unable to let me set good search Filters.  That just doesn't make any sense at all.  I like Twitter, I can see what I'm subscribing to before I subscribe.  For some folks, I'm willing to deal with a noisy channel because the occasional gold-nuggets are truly valuable.  For others, I'd rather not listen.  I want the ability to share widely and listen cautiously.  G+ just doesn't give me what I want.

Shared decision making requires shared responsibilities, not knowledge

According to the Journal of the American Medical Association, 46% of adults cannot understand the Label on their prescription medications (see http://www.readfaster.com/education_stats.asp). The average reading level of adults in this country is commonly reported to be 8th grade.

Take those facts into account and then read this tweet.

@Skepticscalpel: How can a patient, who does not know what meds she is on or why, seriously participate in "Shared Decision Making"?

"The same way a doc who doesn't know the difference between a web browser and a mail client uses his computer" I responded.

"@Skepticscalpel: @motorcycle_guy But the doc isn't putting his care & possibly life in danger by not knowing" is the quick response.

The risks are irrelevant. The notion that one must be technically proficient to participate in decision making is a misconception stongly held by technologists of all kinds. While we'd certainly like for it to be true, it often isn't (remember the stats cited above).

As a software developer, it is often my job to make a complex set of issues readily understandable to a stakeholder who doesn't have the neccessary background to infer consequences of the decisions they must make. My responsibility is to make it clear, theirs is to make their needs known. Together, we decide on a best course forward. If we do a good job, everyone feels good. It is a shared responsibility. I cannot blame the customer for my failure to explain the repurcussions of their choices.

After all, if they understood it as well a I did, they wouldn't need me in the first place.

People are much more complicated than computers or software. I expect the professionals that serve and service them to be much more skilled at this than I am. But perhaps I ask too much.

Cervicular Radiculopathy: An unscientific experiment in HCSM and EBM

If you want to know what it is (and it isn't a funny looking anything), this is actually a pretty useful query.  As an Health IT expert and social intermediary I thought I'd use my recent diagnosis as an opportunity to see what patients who suffer from more severe diseases encounter when they look into disease information using the web and social media.

First of all, I applaud Google's efforts on putting NIH material at the top of the list of returns on my query.  That was most helpful and decided to use that content as a baseline against which I could compare other reading material.  Also, Google's spelling correction of my original spelling (Cervical Radiculapthathy) was great. Any search tool that doesn't include spelling corrections on complex medical terminology is NOT consumer friendly.  My first attempt to type in this term I didn't initially know how to spell produced an excellent result in Google because it spell corrected my mistakes.  But that was not true in any of three other medically focused search engines that I tried.  The Google results were much better organized than the medical search engines.

I tried Bing with the same query and got nearly similar results with TWO important distinctions.  One:  Bing didn't include the NIH material.  Two:  Bing totally failed my ad-hoc spelling correction test.  Come on Microsoft, I know you have spelling correction software ... use it.

As soon as I put the words "Blog" after my search criteria, my experience changed.  The quality of the material went down greatly.  Several blogs included copious Google Ads.  I hate sites that abuse Google AdWords with a passion.  That was enough to drive me away from any site containing healthcare data.  The site creator seems more worried about funding the site than the patient/user experience.  The other things that I saw were sites that were "single-treatment" focused.  These tended to be mono-focused on how "their product" produced results.  I shied away from these as I would a snake-oil salesman but I can see how this stuff is very scary to physicians.

A couple of blogs turned up with the HONcode logo.  That means they've made some effort to be visibly authoritative and conform to a particular code of behavior.  I did not find any other similar effort expressed in more than one site (nor would I have been able to recognize it).  I find myself giving those sites higher marks and it became something I actively looked for.  I used the HONcode search engine and found a rather wide variety of opinions on diagnosis and treatment of my particular condition.  I was frankly surprised somewhat by the variety there, especially given the general consistency I found within other sites I found with pretty authoritative content.

Most notable in many sites was a complete lack of citations to evidence-based-medicine.  The only site that got good marks for that was the NIH site.

A couple of things that I found to be indicative of good content in this brief survey of the web:

1. References to Evidence-based-medicine, especially NLM curated citations (e.g., PubMed).
2. Content attested by a well known clinical organization.
3. Content with a clearly identified last review date.
4. Professionally produced graphics and/or video (especially animation).  Content like that isn't cheap, and anyone who puts some effort into producing it is at least investing in the content, unlike the sites which used tons of adwords and short bits of text clearly lifted from online references.
5. Good indexing.  Often a medical term will have several significant variations (herniated disc was an alternate search term I used).  People who invest in making content accessible are paying attention.
6. Clear signs that the site conformance to a code of ethics (e.g., a link to ethics page, or logo like HONcode).
7. Good search technology.

And bad content:

1. Single treatment focused -- this drug, that therapy, et cetera, especially if the site is clearly benefiting someone who has a drug or therapy they sell.
2. AdWords... Especially at the top of the useful content ... nuf said.
3. Clearly copied content.

I looked separately for patient created content (the other side of the social media conversation).   A good quick test query for that was "I have diagnosis".  That sent me to a number of different message boards that I didn't recognize. Thinking about it a little, it seems obvious that these are pretty much wide open web-sites/message boards that I really would rather avoid.  I want to have others have established at least some level of "membership" before I gave them a way to access  content I created about me and my disease (this post doesn't count -- if it was a more serious or embarrassing concern, I'd be much more circumspect).   So, how would I find a more personally but still social site.  

I went to one pretty well-known patient healthcare social site only to discover that it fails to work with my favorite web browser (Chrome) -NOR- with IE behind the corporate firewall.  So I had to switch back to the home computer to access using my least favorite browser (I will note that it also worked on my iPad just fine).  Using my own equipment is more appropriate, but also raises some interesting policy issues for corporate America. For patients living with chronic health conditions, using employer equipment to access HCSM websites that help them manage their health may be quite worthwhile.

The Chrome failure made me wonder about the tech-savvyness of ePatients.  I expect most (but not all) patients using HCSM would be more tech savvy that the prototypical e-mail-using facebook-posting grandmother (that would be my mother here).  Hmm, I just equated ePatients with users of HCSM.  Is that a fair equation?  Probably not.  There are surely differences here, which requires more in-depth exploration.  Just because all the ePatients I know are also users of social media does not make them the same group.  And my mother, while not a techy-genious practically invented the PHR [she just uses Microsoft Word and a lot of paper to carry it around].

My search from that one social site turned up little for my specific condition without joining.  It did turn up enough aggregate anonymous data to let me know that I was already much better off than others who had turned to it (simply by reading the treatments used).  I didn't fit the typical patient profile (not surprising, considering this was an experiment encouraged by a real life event rather than real life use).  I had similar issues with bad search indexes and lack of spelling correction there.  They didn't cover Cervicular Radiculopathy in their search index, so I fell back to "herniated disc", which did work.  I also tried "herneated disc" and "herniated disk" which failed to turn up anything.  The average patient wouldn't have been as persistent as I was, but then again, the average patient probably wouldn't be at that page to begin with.   

As a patient, did I find my very brief foray into HCSM valuable?  Yes, I did.  Several of the blogs referenced therapy options that neither my PCP nor my PT mentioned.  I'll be asking about one of those options later this week, since I have some indications based on my PT assessment that it may be helpful.   I also discovered some information that about some early symptoms of Carpal Tunnel that my doctor reported to me, but which don't line up with what I've read myself.  I'll be asking him about them on my follow up visit next week.  I'll report my results with my providers after I follow up.  Would I use a patient driven HCSM site?  I think it would depend on my condition and needs.  Certainly I already find a great deal of support in social media for other activities both professional and personal.  I would certainly look for and be happy to find an online community to support my health needs were they much greater than at present.  Even now my social network provides a good deal of support.

This was a fairly safe diagnosis to be testing these waters with.  There are certainly some easy lessons to be learned in this particular space.  I wonder about the convergence between #HCSM and #HealthIT and #CDS and #EBM.  Some folks are onto an idea that would readily bring these together, but that idea is just starting to emerge.

My own prognosis is good, and while my current pain makes it difficult to work, treatment seems to be helping.  Interestingly enough... typing doesn't aggravate the problem, but writing code or XML does.  It has to do with how I need to use my body for the latter task.  Writing this blog keeps my hands fairly well in the same place and mostly involves small hand and wrist motions.  Coding or writing XML involves mouse + keyboard activity which uses shoulder, arm and neck (to track the mouse across the screen).  That is much more difficult for long periods of time.

Already I've redesigned my workplace a bit, getting a larger monitor and raising it up on a swing arm to counteract bad posture brought on by my aging eyes (and I also made my long overdue appointment for an eye exam).  I've readjusted my chair to ensure a more upright posture while sitting and that also helps.

Today I even got close to writing some XML... tomorrow I'll work on it more and maybe even test out coding again...

Twitter tips for Healthcare Social Media Users

I've been using Twitter to promote this blog for about two years.  Over that time, I've learned a number of ways to expand my twitter network.

1. Content is king, but it need not be your own.  Finding good content can be difficult, but there are a few quick and easy things you can do:
1. Locate content sources that you can trust to provide good information to your followers, especially if access is obscure or limited.  Using twitterfeed or feedburner, use that source's RSS feed to generate tweets for you.  A couple of the content sources I use include HL7 Press releases and events, and ASTM E31 Standards activity notifications.  I'm still pushing IHE to get some RSS feeds for its content.
2. Forward public announcements that you get e-mailed to your blog (blogger has an e-mail submission capability).  You'll have to upload or relink the graphics in those e-mails, so make sure that they don't get automatically published.  I often send IHE announcements to this blog.  Do try to keep announcements limited (I try to keep it under one a day), because you should be focusing on good content.
3. Some announcements you get have a web link.  You can save yourself time by just tweeting that link.
4. Use something like the bit.ly sidebar on your web browser to make it easy to tweet an interesting article you've read.
2. Use Hash tags.  Hash tags attract audiences that aren't already following you.  Every important communication should have one to three hash tags.
1. Live tweet an event important to your audience using the event hash tag.  I have a netbook that I like to use for this, as I find my phone difficult to tweet from, but sometimes its the only resource I have. I find that live tweeting an event using hash tags is a great way to expand your audience, especially when they want to, but cannot attend the event you are tweeting. 
2. Attend a tweet chat.  Tweet chats are great ways to connect to new people who are interested in what you have to say, and vica versa.
3. Leave space in your tweets for others to retweet them.  A tweet that is too long to retweet is frustrating.  Based on statistics of my own followers, I'd suggest tweets no longer than 120 characters in length if you want them easily retweeted.
4. Engage in conversations with others.
5. DM new followers and ASK THEM A QUESTION.  When then mention you in response, it is another way to raise your visibility (to their followers).
6. Make Friend Friday (#FF) an opportunity to recognize new followers, and to thank those who have RT's or mentioned you during the week.  It's polite, takes just a little bit of time (with the appropriate tools), and creates loyalty.  Don't #FF the same people each week.  Find new people to recognize.

On paper.li and hcsm

Like many in the Blogosphere, I use a collection of tools to help publicize this blog and other interesting information I find online.  One of those tools is paper.li.  Some folks seem to like paper.li and others don't.

For:  It's a nice collection of stuff that ___ reads.  I can read it all at once.  I don't have to click the link to see what it is about.

Against:  Too many ____ Daily's tweets and retweets just add junk tweets to twitter. 

The most recent complaint goes a bit deeper.  It's about how paper.li redirects ad revenue to paper.li's ad content instead of the original publisher.

I like to use paper.li because it automatically aggregates what the people I'm following are reading and I read my own front page that it creates for me every day.  I see stuff I wouldn't otherwise see because I don't have time to click on the tweeter's link that was posted.

It also organizes the tweets by topic, although that clearly needs more work.  I find it rather odd what gets put where some days.  Organization of tweets and links by hashtag are the most valuable to me.  Other tabs are not clearly as good.

I don't like the tabs, because I'd rather scroll through one long page than use tabs (it's quicker or at least feels that way).

I don't worry about ad content.  Paper.li provides a valuable service, and for that, I'm willing to put up with their ads.  They are at least pertinent.  Also, if I want all the details on an article, when I click through, I'll get the original ads that were posted with the article.  Paper.li doesn't usually include the full content of a post unless its mostly a graphic or video.  In that case, I suppose there might be an issue for creators of rich media content, but that's not typically an issue for most of what I read.

I like what Paper.li does for this blog-site, for my twitter presence, and for my readers.  What do you think about it?

@NationaleHealth discovers #HCSM

Crossed my Desk this AM...

---

Contact: Jenna Bramble National eHealth Collaborative jbramble@nationalehealth.org (202) 624-3275

Like, Follow, Watch, Discuss: NeHC Launches Social Media Efforts National eHealth Collaborative Joins Facebook, Twitter, and YouTube WASHINGTON, DC (December 13, 2010) –National eHealth Collaborative (NeHC) last week launched its official Facebook page, Twitter feed, and YouTube channel, kicking off its push to develop stronger methods for seeking stakeholder feedback and promoting collaborative discussion about health information exchange. Following NeHC's NHIN University program, NHIN 204 – Beacon Communities, NeHC Interim CEO Aaron Seib announced that questions from the class would be posted on the new NeHC Facebook page for continued discussion among interested stakeholders. NeHC staff also live-tweeted the class through the Twitter handle @NationaleHealth, and a new video on the Beacon Communities program was posted on NeHC's new YouTube channel.  NeHC's YouTube channel will also feature footage from past NeHC Stakeholder Forums, as well as educational materials and clips from NHIN University classes and other NeHC events. "We see social media as just one more avenue we can use to leverage two-way communication with stakeholders," said Aaron Seib. "At the end of the day, our goal is to create a robust community of stakeholders who are talking and collaborating to solve some of the most pressing problems facing the widespread adoption and implementation of health information exchange." NeHC encourages stakeholders to use the Facebook page as a forum for discussion and sharing relevant information and links as well as a resource for keeping up with NeHC news and events. Facebook users can find the NeHC page by typing "National eHealth Collaborative" into the search bar or going to http://nationalehealth.us1.list-manage1.com/track/click?u=aea4a31fd49de738553683cb4&id=7a5dda9c7c&e=7f799d00de. Twitter users can follow NeHC at @NationaleHealth, and the NeHC YouTube channel is live at http://nationalehealth.us1.list-manage1.com/track/click?u=aea4a31fd49de738553683cb4&id=61853aad00&e=7f799d00de. ###  About National eHealth Collaborative National eHealth Collaborative (NeHC) is a public-private partnership that enables secure and interoperable nationwide health information exchange to advance health and improve health care.  Working in conjunction with its partners, including the Office of the National Coordinator for Health IT (ONC) in the U.S. Department of Health and Human Services (HHS), NeHC engages stakeholders in a collaborative and consensus-driven way to realize common goals that lead to transformative change.  NeHC reaches broadly into all sectors of healthcare and health IT, employs open and inclusive methods, and makes its outcomes broadly available for continued improvement.  This philosophy and approach allows NeHC to offer a uniquely balanced perspective that leverages diverse points of view and provides the essential public-private platform for collaboratively pursuing solutions to universal trusted and effective health information exchange.

An interesting diversion into the Death of the Semantic Web

Saturday, Monday and Tuesday's posts all got a lot of readership this week, to the point that I've hit a new high, more than 1000 pages views in a day, and am currently on track to beat the record of last month and the month before.  As I have been maintaining, promoting and enhancing this blog, and being more engaged in Social Media, I think I've discovered a few ideas about social media worth persuing more deeply.

Idea Number 1:  The semantic web is dead.  OWL and RDF and ontology may be great for computers to manage semantic relationships, but the web and its users are such that these technologies have never really become mainstream.  Instead, what has happened is that the users of the web have developed new ways to ensure that high quality, relevant content comes to them, and is readily accessible through search of semi-controlled vocabularies.

The replacement for the semantic web is the social web.  I get a daily feed of content tailored to my needs by virtue of the social networks that I participate in, and it has high relevance to my work and play.  I can search for relevant content using Hash Tags.  These are the new ontology; the semi-controlled, user defined vocabulary which is associated with this content and the links and conversations that go along with it.

I predict that we will see new information retrieval tools that build on hash tags being more broadly deployed.  Today, the tag cloud associated with this blog is directly related to the hash tags that "I" tweet when the post is done.  I expect shortly to be able to write a blog post, and have available to me a tool that identifies the relevant hash tags for me based on my social networks, and similar content.  There will be collators of hash tags who will evaluate and define them, or just record how they are used (like dictionary editors).  This will perhaps occur automatically, turning what is presently a semi-controlled user defined vocabulary into something that has just a bit more structure on it.

Aggregators will turn to automation to associate information such as what is contained in this blog into even more accessible content.  It will get tagged with hash tags that will initially be defined as they are used, and will later become more controlled as experience is gained with them.  I expect at some point that Twitter will start showing me "trending topics" and hash tags in my social networks, possibly at different degrees of removal (what are the trending topics and tags among my friend's freinds).

I expect someday to pull up a visualization of my "tag cloud" that shows the relationships and interconnections between them, including connections made by my friends and possibly even their friends.  By so doing, I expect to be able to learn about new tags that may be of interest to me.

Idea Number 2:  The relationshop between Social Networks and identity will fragment and reform.  Like many others, I am members of several different social networks, some associated with my role as a healthcare standards geek, others with personal relationships developed through my college years, others related to family, and others that are just simply groups of friends with a common interest.  I am already able to join and unjoin semi-permanent social networks to alter the way I percieve the web, or it percieves me.  These semi-permanent social networks are groups that I belong to through linked-in, google groups, mailing lists, interest groups in different social networking sites, et cetera.  But I will also be able to assume a temporary identity to view the world as others view it.  I can do this to some extent on some social networking sites by viewing my friend's friends page, and expect that trend to continue. 

You can already see some of what I see through my eyes on twitter using paper.li, and build newspapers for other twitter users too.  What you don't see today are the links that I clicked on, or the tweets that really grabbed my attention, but with Twitter and Google taking back control of the URLs they show to end users, that data could eventually be available.

Both of these ideas will eventually have a profound impact on the web as we see it, and vertical markets like healthcare once they figure out how to make use of these technologies.  I have to start thinking about how these technologies will change healthcare, and won't even pretent I know where it is going.  The ride has already been pretty interesting.

The semantic web is dead.  Long live the social web.

Healthcare IT in the Future

What do I know about where Healthcare IT is headed over the next five years?

1. There will be changes.
2. Mistakes will be made along the way.
3. People will learn new relationships with the technology and those relationships will not be static.

The first two statements are easily recognized aphorisms.  I could have been even more succinct and said **** will happen to cover them together.  What some others don't see though is the truth of the third statement.

We all know there will be more use of technology.  Thirty-something billion dollars in the US have assured that, as have similar expenditures elsewhere in the world.  We also have the experience of watching years of mistakes, some of them pretty big.  The technology has not yet been invented that some idiot cannot screw up somehow. 

But, it is not only idiots that mess up, even really bright people do not always get it right on the first try (or the second, or even the 22nd ).  That's a process we call learning, and when we head into uncharted territorries we will make mistakes, and we will learn from them, and then there will be new mistakes to be made.

“|	An idiot repeats his mistakes. The smart man learns from his mistakes. But the genius learns from the mistakes of others.  -- Unknown

So, we will make mistakes, and we will learn from those mistakes.  I think I've said here before that there was a time when absolutely none of us would ever enter a credit card number into a web page.   Now we buy books, computers, cars and even houses using the web.  What can we learn from this, and by so doing prove our own genius?

Quite a bit.  The biggest thing to learn however, is that we will figure it out. The technology will become better, more acceptable, more secure and safer, the longer we experience it and adjust it.  I read a lot about concerns of privacy, or accability of communication over the web or via social media, or about whether doctors will accept patient sourced electronic communications.  What I know is that while these concerns are valid, and that they do point out problems that we haven't fully resolved yet, we will work through them.  Eventually, doctors will learn to deal with patient sourced data, and learn to communicate with patients with the same immediacy as we communicate with everyone else.  We just need to put the effort in to figure it all out.

I wanna be an ePatient

Not sure what the tune is to go with this, but it's sort'a semi-RAP with lots of attitude.

I wanna be an e-Patient
To be a patient like Dave
Give me my damn data!
'Cause it's my life to save

I want to be an e-patient,
Under Meaningful Use
you can have my consent
to share without abuse

REFRAIN

Send me my damn data,
in a Patient Summary
You can use a CCR
But I'd prefer a CCD!

REFRAIN

I got my healthcare Inbox
You can send it DIRECT
To my HIE
XDS with CONNECT

REFRAIN

Hey I'm an e-Patient
Measurin' your quality
I'm gonna share my data
with other patients like Me
 
REFRAIN
 
Hey I'm an e-Patient
and you can be to
Just need ask your doctor
for your C32
 
REFRAIN


This blog post constitutes my formal submission for entrance to the The American College of Medical Informatimusicology.  I now return you to your normal weekly broadcast.  Enjoy the long weekend.

       Keith
    ^
e-Patient

---

Updated 6-26-2011 with the video taken at #HealthFoo

Random Musings on Identity

“|You have as many identities as you have friends.  -- Unknown

This particular post is one in which something I learn via one persona crosses over to the other, and of course, because this is a different persona, gets warped and rewritten.


My online identities are quite convoluted. I reported in a post titled Tweet a little bit more than a year ago that I have at least 16 different ways that I communicate electronically.  Associated with each one is a slightly different identity.  Some identities (e.g., @motorcycle_guy on Twitter and this blog ) cross over to the point of being virtually indistinguishable.

Others are very closely held, not quite secrets (you can find me on the interweb), that I try to keep separate. These are not identities I share with many, some only to close friends and colleagues, and others only to people that have known me in college (or through that tribe).  One thing that I have learned through all my friends and close colleagues is that no matter what issues I have with identity, they have even more.  I know of one person who is male in one place, female in another, and in yet a third, both.

I have a Facebook account, mostly so that I can peruse pictures from my family members, but I rarely ever post there.

I have a LinkedIn account that I started when I was first hunting (for this job), and now use it to stay connected with former colleagues and to connect to others in this industry. That is pretty well hooked into my twitter identity.

I have a Blog internal to GE that I haven't posted to in quite a while because I do so much more writing here.

I'm on at least 50 different mailing lists, some using my personal e-mail and others with my work e-mail address.  The rule is, if I'm officially representing my employer it get's my work e-mail, but otherwise, it goes to the personal one.  I don't post my e-mail address because frankly, it's too easy to scrape and I've burned at least three personal e-mail addresses due to junk mail.  My e-mail address is on the web, and if you know what I do and for who, you can find it easily enough (big hint, I cochair committees for HL7 and IHE).  And if not, you can always hit the Contact Me link on this blog (and if you know how that works, you can e-mail me directly).

One useful rule I've figured out is that if it's coming with me should I leave my current employer, the identity is tied to my personal e-mail address.

I have a personal journal, and if you are among the about 10 people I share it with, you are pretty lucky, and also pretty cool.  Most of my friends have already agreed that what I post there to "friends only" will not make it back into the wider twitterverse.  I need a place to moan and gripe where I don't have to worry about what [redacted] thinks.  I once recieved a job offer from someone who found me there and though it would be neat to let me know he discovered my "alternate self".  That wasn't a complete and total turn-off, but it definately had a negative impact.

I have a Skype account, you can find me there using "Keith W. Boone".

So, with all of these different musings on identity, what are you to do?  Don't worry, I'll figure it out for you.  If you contact me through one identity and I think another is more appropriate, I'll let you know.  If you want to tweet, share, or otherwise link to this content feel free to do so, in whatever venue you like (In fact, I just made it easier to do that).  That of course doesn't give you free reign to exceed your rights or mine under copyright (see the Policies Page),

With all of these identities, my mind next wonders (or is it wanders) to how that relates to the online relationships I want to have with my healthcare providers.  I don't think I want healthcare information in my "gmail" inbox.  For one, its not something I can reliably secure.  I want an e-mail inbox that requires encryption on the way in via TLS.  No, that's not the NHIN Direct way (they have specified an S/MIME solution).  But I worry that someone will try to e-mail me healthcare data without knowing what they are doing, and I want to make sure that A) it is secure and B) I can tell my mother how to do it.

I think I'll be happy to have one or two direct electronic relationships with my providers.  When that becomes three our four, then I'll start looking for better solutions.  But I can take this identity thing one step at a time.

My last musing on Identity?  It seems that while the American populace (or at least it's Congress) is not ready for a National Patient Identity, the VA and DOD are ready for a national solidier healthcare identifier.  Maybe that's another step at a time approach.  Of course the VA and DOD have a pretty well documented reason to want it that the rest of the citizenry may just be waiting to have.  Frankly, I could skip that step if you don't mind.

     Keith W. Boone
     "That Motorcycle Guy"
     Standards Geek
     @motorcycle_guy
     Co-chair HL7 Structured Documents Workgroup
     Co-chair IHE Patient Care Coordination Planning Committee
     Co-chair EHRA Quality and Clinical Decision Support Special Interest Group
     A few unmentionables and some private ones

P.S.  If you know the source or original for the quote above, please let me know.