socialmediafrenzy.com

There isn’t much in my wife’s Personal Health Record that hasn’t been shared on the Internet. When she became pregnant two years ago she decided to use the web  to learn as much as possible about the wonderful and terrifying uncertainties of pregancy. She participated in the WebMD message boards with other women, candidly sharing her difficulties and observations in a very public forum. The women that made up her community on the boards were from all over the country. They had different ethnic, economic and social backgrounds. Their perspective differences ran the gamut. But pregnancy was their common ground. 

There has been a lot of debate about the marriage of PHR and EMR. How much access? Who owns what? Whatever the cost of Security and privacy. All the while Google and Microsoft are competing for our trust. But there’s another peculiar side to this equation: those of us who already entrust our personal health data to the public at large.

We have surrendered our privacy in exchange of membership in the Community of Care. Our gowns are open to the public eye.

Yes, we want to make our warts public. We gladly share our toe-nail fungus, bad breath and brain tumors with the world. Making personal health public seems ridiculous, exhibitionist and even dangerous at first. But the more I think about it the more it makes sense. And it’s exactly what many people have already done and want to do.

The culture of self-diagnosis that has grown up on the Internet has been shadowed by “Peer Diagnosis.” As many healthcare consumers seek to educate themselves online, they also use the web to share their personal health info to solicit opinions, share experiences and gain support from others. We see this in blogs, message boards on WebMD, CancerCompass etc.  We also see this in the “CarePages” model, where users can record their health journey on a profile page to share with friends. 

The question is why do so many people choose to publicly share their health story in light of all the hubbubb about protected health information? 

One answer is: millions of $$ are spent on health IT security and that bill ultimately gets paid by the consumer. Privacy is a product that we pay for. Privacy is a product that is marketed, advertised and commodified. The more precious it seems the more demand… the more demand the higher the asking price… you get the idea.

Another answer is : Our health care system is fragmented by different payer strategies and competing treatment options. It makes perfect sense that consumers would reach out to the community to help them discover the best options. In the process they may have to share some information that once was guarded, but in doing so they may find some connection, some feeling of care that is missing from our system. I see this very “Social Health Record” as a powerful tool in healthcare decision-making and support. Sadly, it is also the least likely space you will find a doctor or insurer offering to provide assistance.

Our waiting rooms are quiet places full of quiet people. Patients often come alone and seek a chair or two away from the next patient. They sit anxiously contemplating how they feel, nervously thumbing magazines, anxiously awaiting their name to be called, frustrated by a lack of control that their medical conditions impose upon them. They may feel like crying out, but they are quiet nonetheless. We are taught that the waiting room is a place to keep to yourself. We are taught that our health is a private matter, and this extends to public policy and corporate strategy.

By contrast the online community that my wife belongs to is anything but quiet. Her Social Health Network has been an ongoing source of advice, support and comeradery when she needed it. Through it she also offered her own practical experience and wisdom to others. The bonds she has formed are a very important social network for her. In a couple of weeks we are travelling across the country to meet in person some of the friends she made online. 

I know that the value of the Social Health Record I am proposing springs from the principle of choice. We can decide what and how much to disclose. We can even author our identity to protect us when necessary. For many good reasons, our vaults of health data need to be protected.  

But I wonder what cost this debate has for us as a society and industry. Are we so focused on security and privacy that we are reinforcing the sense of institutional sterility and isolation that Health 2.0 is supposed to cure?   

Somebody out there has got to be thinking of ways we can leverage our collective knowledge via Web 2.0 tools. A typical hospital has hundreds of thousands of hours of academic and practical education locked away in the brains of its clinicians.

Ok I know we’re already way behind the rest of the world in terms of technology integration. But I wonder what it would mean, and what shape a collaborative medical tool would manifest. What if all our nurses and doctors were communicating in real time their observations, processes, errors and successes?

Do we see blogs and social networks springing up to replace the static hospital intranets that currently act as little more than repositories for HR and policy documents? Are hospital wikis on the horizon? We already know that message forums in many cases have been resisted by management fearing loss of control to union mongering nurses. And, in rare cases where message forums for staff have been established the traffic has been underwhelming. There have been a few success stories out there, but not enough to encourage widespread adoption.

How about RSS? How many of your staff even know what that is?

I’m not sure if the form for Healthcare Enterprise 2.0 has revealed itself yet. And maybe that’s why the potential for collaboration remains untapped. Healthcare remains a business that is more about person to person contact (thankfully). Privacy issues cloud the probability that social networking tools will ever be of benefit. But I am hopeful. And I am not giving up.

Maybe the term “social networking” is itself a limiting factor and we need to think in terms of “clinical networking”  in a way that draws together and focuses the resources. Patient bookmarking you say?  Shift-change Podcasts. Virtual rounds and Patient self-charting. Death as downtime. Hospital corners on my style sheets. Anyone? Anyone?

Note: I wrote and originally posted this at Webiscope. I posted it here too for relevance to my readers.

I read Zen and the Art of Motorcycle Maintenance when I was in college. I ran across it in an old used bookstore and thought the title sounded cool. I remember standing there debating whether to buy the book, daydreaming at the very least some cute co-ed might see me reading it under a tree on campus and think I was hip. Three dollars and change later I was immersed in Robert Pirsig’s cross-country motorcycle quest into western values. Little did I know the book’s central question “What is Quality?” would then haunt me and eventually find its way into my work.

Last year the Board of Piedmont Hospital tasked me with creating a Quality transparency website. As you all know, talking about quality in abstract philosophical terms is one thing, but tackling healthcare quality is completely different thing. Today’s healthcare consumer wants empirical facts, hard numbers, percentages extended to the second decimal place. They want real accountability. At least that’s what I thought.

The Romantic Poets
In the Summer of 07 I joined our Chief Quality Officer, Leigh Hamby, MD, in making the case for a Quality site to the Board. I foretold the coming tsunami of Health 2.0. I waxed “better informed patients with health savings plans.” I waned “consumer generated healthcare” and “comparison hospital shopping on the web.” We told of government websites already reporting our quality metrics. We warned that if some negative metric got to the press there would be nothing to defend us in the court of public opinion, unless we put up our own Quality site to tell our side of the story. We also assured them a Quality site would be a good tool to motivate our staff to improve performance.

One Board member raised his hand and questioned “the wisdom of using external exposure to stimulate internal change.” It was a good point and I had no response except to unveil my beta Quality Site full of AJAX widgets, user-friendly tabs and animated graphs. The usability was sweet. The graphs looked even better. In the end, the Board agreed to let us launch our site complete with patient satisfaction scores and core measures data. We were thrilled. We would be the first hospital in our market to adopt a bleeding edge approach to healthcare marketing.

The Age of Reason
Here’s what happened next… basically nothing. Oh, I mean the staff loved it. We got tons of praise from senior leadership. Even the Board was happy. I should have been elated, but I wasn’t.

The problem was the traffic to the site wasn’t what I’d hoped. We only got a handful of visitors each week, and I realized a lot of those were probably staff checking out the clinical measures. We knew that a typical consumer’s idea of healthcare quality favored customer service over clinical data. But the visits to our patient satisfaction site did not amount to much either. After all the work and preparation, where was the tsunami of Health 2.0?

The Enlightenment
Over the next few months I tried to focus on the important details of hospital website maintenance like correcting department phone numbers, updating doctor photos and press releases, you know, the fun part of the job (not). We continued to receive positive recognition within the hospital, but every time it happened I felt somehow “transparent” about accepting the praise. The truth was in the web metrics, nobody outside our walls really cared about quality. Or did they?

One morning I got a call from Nina Montanaro, VP Marketing & Public Relations, who was very excited to tell me that she had just come from an “Executive Roundtable” where all the area hospital CEOs get together and chat about healthcare. During the meeting a CEO from another prominent health system recognized our CEO, Tim Stack, for doing the right thing and publishing our quality data on the web. He also mentioned how nice the site looked. J He strongly encouraged all the other CEOs to start publishing their data too.

At first I didn’t realize the importance of what happened. But it dawned on me that our hospital may be influencing other hospitals to start practicing healthcare differently. We had embraced transparency and begun to change healthcare in our region. Suddenly my enthusiasm for the Quality site came full circle.

Postmodernism
No small irony that Robert Pirsig’s book stemmed from his experience as a mental health patient. Back then the providers owned and interpreted all the data, unilaterally dictating treatment regimes. In Pirsig’s case it meant undergoing electroshock which split his psyche in half and left him chasing a ghost of himself cross-country on a motorcycle.

We are still very focused on case-volume in healthcare, and we sometimes forget the real ROI is about quality rather than quantity. I think this is also true of hospital website traffic. So maybe our Quality site will never draw much of a crowd and maybe Health 2.0 is more wishful hype than substance at this point. So what.

Last month we started publishing our risk adjusted mortality, surgical site infection and sepsis data. This data is the essence of transparency, though to be honest there still isn’t much traffic, no Health 2.0 tsunami. But it’s ok. Maybe the real value of it is somewhere in the long tail. Maybe it is less about how many people are visiting than who is visiting.

Like Pirsig’s quest on the open road, our quality transparency site has turned out to be as much about process as outcome, and more about the journey than the destination.

The good folks over at Webiscope have posted a blog entry I wrote about hospital quality sites. I have decided to add them to my blogroll. For anyone who cares about healthcare web development this is a great community. We keep it somewhat gated to keep the vendors out. Once a year they have a get-together and have dinner at the annual Healthcare Internet Conference.

I finally got around to trying out Google Health today. Part of my tardiness to jump out there and test yet another PHR product has to do with the absolute boredom of entering my own health information over and over again into an instrument that should be able to do most of the heavy lifting on its own. I was impressed, however, with the way the product works and happy to see the small flock of providers, like Cleveland Clinic and Walgreens, who already have built bridges into the system allowing users to port their data in automatically.

This sort of openness will become the standard in our industry for good reason. Vendors are often slow to provide the solutions that we need and this has often put us in the position of writing our own software. This would seem all too appropriate because we are the closest to our subject matter. But in practice, we rarely have the development talent or resources like that of a Google or Microsoft so the products tend to be short-sighted or have bush-league usability. And why should we throw excessive resources at something that is not our primary mission?

I’ve been following Friendfeed this week and I’m proud to say that I’m not an addict yet. I suspect it won’t take long though. Dana sent me an invitation to another interesting service called LibraryThing which allows users to catalogue and review their own books. It’s sort of like a “book-wiki” but with the features of a social network which include being able to export your posts to Friendfeed. I like this much better than Amazon as a way to research reader reviews.

I am working a post for Webiscope about the Quality site I’ve worked on at Piedmont Hospital. So far good reviews, but I am waiting on the boss for clearance before I release it. I did this as a courtesy because I mention certain names and I want them to know that their brand is going to be on display in a less formal format than advertisement or press release.

My foray into Healthcare 2.0 has been an enlightening sort of disillusionment about our expectations of where Web 2.0 is leading and not leading our culture. I’ve learned that changes in this era need to begin with an increasing sense of responsibility on the part of institutions if they are to maintain their relevance and usefulness.

I guess that brings me to the subject of why I am blogging. I came up with the idea for Social Media Frenzy a couple of years ago after attending the 2006 Healthcare Internet conference in Atlanta and listening to Shel Holtz speak about social media.

I was working for Saint Joseph’s Hospital and had just finished launching a new website for them. I was invited to present about incorporating video into hospital websites, and I accepted an award for Best Site Design. It was a high point of my career and my blood was roiling in a swift current of breakout-session muffins and conference coffee.

When Shel Holtz mounted the pulpit to give his presentation about social media, my sunny day was suddenly interrupted by a dark cloud. By that I don’t mean anything negative. The ideas I brought from his talk just sent me back to the drawing board, back to the lab. I knew right then as I know to this day that we have a huge responsibility ahead of us in healthcare. We are pulling back the curtain on the information that has always been closely guarded by the medical community. But in doing so we also have the responsibility to educate the public in an ethical manner.

What would the hospital website with a Web 2.0 skin look like? Were message forums and blogs on a hospital website realistic given HIPAA restrictions? Was there a place for Wikis on our Intranets, and was an Intranet just another wall to take down? Was management ready to relinquish control of the brand message? How did we avoid the mistake of thinking this was just another trend, and prevent ourselves from jumping in with a me-too mentality? Anyway, how was the social media really implicated at all?

These were some of the questions I’ve been exploring over the past couple of years. It has been a slow, steady crusade but I believe I am beginning to see sunlight crack the cloud that Shel brought with him that day. This blog is the beginning of it.