As I have mentioned previously on this blog, and as is mentioned on the Certification Commission for Health Information Technology Website, I am Co-chair of CCHIT’s first Workgroup covering Personal Health Records this year, along with Lory Wood from the Good Health Network.

As you can tell from the list of members on the workgroup , the expertise represented is very impressive in its breadth, and its national scope, and we have all been working hard to support the first certification process for Personal Health Records in 2009. I encourage anyone interested in PHR Certification to follow its course through CCHIT communications on its web site and other venues; I won’t be discussing specifics of certification here.

What I am writing about is how this process is changing my understanding of the role of personal health records beyond the health system.

A great example is in the case of emergency responders - I recently posted my experience being one. Earlier this year, I commented on the value of a personal health record in another incident I was a part of, and it is interesting for me to look at what I said., which was around the value of a personal health record in preventing emergencies by promoting better patient engagement around their therapies. I still believe in that.

While that’s waiting to happen though, what about the times when an employee might have an emergency at the worksite or a person might suffer a car crash or other incident while traveling? It’s possible that in the incident I responded to earlier this year that the result would be a report back to family that their mother/father/daughter/son/brother/sister had died while co-workers and responders were frantically working to assess their medical condition.

Imagine what it might be like for an employee in a large big-box retailer to be able to identify parts of their medical history to be made available on an emergency basis to their employer, especially if the worksite is large enough that their personal effects are typically very far from where they work. Many of us fill out emergency contact information when we complete new-employment paperwork. Usually this is a piece of paper, and in most cases provides a thin buffer of hope that critical information about us will be available if it’s needed at a worksite emergency.

The same goes for automobile crashes, because a vehicle identification number by itself is often not enough to positively identify a crash victim or provide relevant medical information at a critical time of need. Several states (Florida and Ohio) and the automotive industry have thought about this. As Larry Williams explained to me, manufacturers have thought about the car ownership experience and their desire to provide support at its lowest point by providing methods for consumers to connect identification and emergency contact information to their vehicle IDs. The innovation in health care that comes from industries who are built on serving consumers primarily is interesting, isn’t it.

Both the American Health Information Community and IHE have produced a use case and white paper respectively, relevant to the potential role of a personal health record beyond a tethered connection to a primary care provider, that describe an ability for a person to tie their medical history to their vehicle’s identification number, for positive identification and medical attention. This is where a personal health record might integrate, at the discretion of the consumer.

All of this presumes appropriate privacy protections, of course, such that linkage and management of the information is under the control of the consumer.

This thinking is reinforcing in me the idea that a patient’s medical home is really the place where they live, work, and play. The promise of the personal health record is that people can leverage their personal health information at the right place and time to be enabled to do what’s most important to them, while being supported by a broad diversity of care providers, who at any given time are nurses, doctors, co-workers, emergency responders, families, and communities. This is a good thing to learn.

Just I was getting ready to post a conversation I had with Larry Williams, CEO and President of Roadside Telematics Corporation about the view of personal health records from the emergency responder perspective, I became one, again.

This time, it was this morning on a busy Washington, DC sidewalk, where an individual was face down on the sidewalk, in significant distress, with several other people frantically calling 911, and two colleagues with no medical training holding them. There were no other medical personnel around - just me. These were the few minutes before emergency medical services arrived. The person was unable to speak, and his colleagues had very limited English speaking ability. The best I could do was offer some stabilization and protection from people walking by, watch closely for any signs of arrest, and wait, and hope for help.

When EMS arrived shortly after, I identified myself as a physician and gave my presumptive diagnosis. The EMS person said, “Is that what you think is going on?” Even as a physician, in my mystical appreciation of EMS I almost thought the question was sarcastic, but he was genuinely interested in the history I had taken. And my history was limited at best.

The EMS personnel asked the colleagues if the patient had ID. They said, “No ID.” So, no identity and no medical history probably meant a trip to the hospital as as John Doe.

As you walk away from a situation like this, there’s no mistaking the feeling of having your breath taken away for a few minutes. It’s the same feeling I had when I was an emergency responder earlier this year, and several other times on various plane flights (I posted about those events too - they leave a mark - see them here).

The thing I picked up from talking to Larry about myself is identification with the emergency responder role. In my last few events, I always related the meaning to my role as a primary care physician, about how the primary care system could prevent these situations and how patient access would support that in happening. However, that’s going to be some time in coming, and various States and industries (notably the auto industry) are already developing solutions to help people.

Tomorrow I’m going to post what I learned about emergency responders, interoperability, and the role of PHRs in helping people in emergencies, as well as in preventing them in the first place.

In the meantime, I think it’s useful to think about all of the times you are somewhere, in public, in a workplace, in your car, on a plane, where people who are strangers to you (co-workers, fellow travelers, the EMS system) might need to help you in an emergency. Would you want there to be a way for them to have access to medical information about you if they needed it to help you?

Where the magic happens

I had the opportunity to talk about participation (of patients, families, and communities) in health care and the design of the health system today at the Agency for Healthcare Research and Quality (AHRQ) headquarters in Rockville, Maryland, at the invitation of AHRQ’s Director, Carolyn Clancy, MD, with attendance of experts including Jon White, MD, Director of the Health Information Technology Portfolio for AHRQ.

What can I say except it was a great experience at a place I and many people who do what I do have thought highly of for a very long time.

The slides I presented are below. I want to thank the students in the University of Washington eMHA program for doing a run-through with me. One of the suggestions I was given was to know what I “wanted” in giving this presentation to AHRQ. I told the group that I thought about this, and it was - to inspire them. I think that’s both enough to want, and a lot to want.

The session is/was a reminder to me that in 2008, people who are studying health information technology (a) have a good grasp of the idea that it’s a tool to improve health and health care and (b) the importance of involving patients and families in their care. That, and we should look outside our borders, to places like Africa, to think about innovation in IT beyond the computer.

Inspiration is a 2-way street. Thanks again Bill, Carolyn, Jon and AHRQ for the warm welcome.

Friends at a very large software company once referred to me in a category they called “influential end user.” I think that means I have no actual authority regarding purchasing decisions (or anything really), but I can convince people to do things (including change health care maybe?).

I think that’s happened recently with the iPhone, as I just received a note from Richard Baron, MD, from the great ABIM Foundation, who said he heard the words “have to” from my mouth echoing in his head about whether he should get one. The “have to” part is about using what are patients are using, and learning about it with them, rather than telling them not to use what we don’t understand.

So, he got one, and maybe a few other people I recommended the iPhone to did, as well. I thought I’d post which iPhone Applications I’m using on my iPhone to give people a head start. Try them out, see what you think. And kudos to all the health care professionals out there who say “yes” to trying new things so they can perform better for their patients.

A little info:

• DC Weather is a hyperlink to the hour-by-hour of Washington, DC. You can customize for your city.
• Tipr is also a hyperlink to a web-based Tipping application. It gives you the results in palindromes, so you can check for manipulation. Nifty.
• Remote is Apple’s iTunes and iTV controller. Very cool.
• RSS is a hyperlink to Google Reader. It’s what I use for RSS now. Well optimized for iPhone and the Web (sorry NetNewsWire, I had to switch…)
• Where is a helpful assist for my Starbucks-dar. Maybe also useful for Zipcar (when I have to drive, Metro is really my automobile)
• Loopt and Twinkle are my preferred location aware friendfinders/lifestreamers. Just testing them now.
• Twitterific is where I post to my Twitterfeed. Give it a try. Follow me.
• Urban Spoon, Restaurants, and Yelp are my food finders, except I am not much of a foodie, so I am mostly interested in these for their health promotion potential.
• Mobile News is as it says. I am really not much of a news junkie (Andrew Weil, MD recommended awhile back that too much news is unhealthy, I’d rather just make my own news)
• Cuberunner is just a game to demonstrate the accelerometer functions - for the “Isn’t this device cool” factor. Thanks to Jody Pettit, MD, fellow i-enthusiast for the tip.
• 1Password is useful for storing Web passwords securely. It has a built in web browser so will enter them for you.
• Epocrates is just a cool medical application that shows the promise of the device. Imagine using this as a tool for medication reconciliation and adherence - like how about a patient version, a pharmacist version, a nursing version, that delivers the med list graphically to the patient?
• AOL Radio and Last.fm are experiments in finding music online.
• MyLite is the electronic flashlight. I like the rock concert effect. Works really well in a power outage.
• Google is google. I should use this app more - it does really nice searches of contacts on the phone.

You can get a sense of how I do things from this list, I realized. I don’t have an electronic to-do list, task manager, etc. I’ll post separately about what I do for that. Paper is really good for a lot of things.

What apps am I missing? What do you think of these?

This photograph is from a session using Tapulous’ Twinkle software, which is a location-aware version of Twitter. This exchange is evidence that the iPhone’s most powerful innovation is not 3G, it’s GPS, which Apple, Inc., has now seeded into the mainstream, just as it did with a host of other technologies, like Wi-Fi.

What is shown here is community being created with complete strangers based on location - this exchange happened when my tweet was broadcast to everyone within a 1 mile radius of the San Francisco airport.

Some of you out there have been expressing your reservations about Twitter, Friendfeed, and the like. Here’s a nice article about both. Don’t be reserved, these are important technologies that will have applications in healthcare. Get your Twitter accounts now. Post your ideas in the comments, as well, please!

And San Francisco, thanks for being nice. You never disappoint.

I admit, that maybe, once or twice in my past, I may have used convening and convener in less than flattering terms, much like I used to use “process” in unflattering terms. I learned through LEAN, though, that process isn’t bad, bad process is bad. And so I have learned the same thing about convening, now that I have done it a couple times this summer, with the California Healthcare Foundation.

The most recent time was yesterday, when Veenu Aulakh, MPH, and I brought together Safety Net health care organizations, and national experts in patient online access and social impact of the Internet to talk about (you can guess…) “Patient Online Access in the Safety Net.”

These being the first convenings I have co-led, rather than participated in, I have learned a ton, and have gotten a good understanding of doing this for a purpose, which both situations have had. In the event we hosted yesterday, in Oakland, I put together an A3 document before we invited anyone, which included the background, the goals, and most importantly, the “why?” we were doing this in the first place. It was really helpful to have created agreement around the “why?” - I referred to this many times in the planning.

At the event itself, I got a new perspective that I had not had as a participant previously. It was one of listener/observer - even when I was doing the talking, I was interested to see reactions and learn what people and organizations are capable of. It made me think that when I have been a participant in convenings in the past, this is what my hosts were doing - learning what myself or my organization was capable of doing to solve a problem, as much as they might have tapped me as an expert. Interesting to have this happening in my brain.

Sharing information happened, too, courtesy of some of the most innovative organizations in the U.S., including Cambridge Health Alliance, University of California, San Francisco’s Positive Health Program , New York’s Primary Care Information Project, Institute for Family Health, and Kaiser Permanente.

In addition to all of this, there were a few nice moments of recognition for people’s work, such as when Jim Kahn, MD, thanked Kate Christensen, MD, and her team at Kaiser Permanente for their support and assistance in the launch of the myHERO patient portal for HIV patients cared for at San Francisco General Hospital.

…and a little something for me, a follow-up conversation with Hilary Worthen, MD, from Cambridge Health Alliance, about his study and pathway to discover and implement LEAN in primary care at CHA. He told me that for him, this is a transition from thinking about exam rooms and staff to “work that you need to get done, defined by doctor and patient.” I love hearing about how people apply their creativity and copy the thinking of LEAN to do exceptional things for their patients.

This being the second time I have done this, I don’t know if it was perfect. We tried a lot of things I’ve not done in meetings before, and I am still working to integrate social media before, during, and after. I am definitely sold on my philosophy of supporting any and all technology use (”if you need or want to use your device, use it”) - I have not, in my conveningness, come around to the “turn your devices off” philosophy, as I have written about previously.

Oh, and I learned that a 60″ table seats 8 people.

Here are a few images from yesterday. I’ll follow up with my slides in a separate post. Click on any to see larger size.

I started off a presentation-in-the-works to students in the University of Washington Executive MHA program, led by David Masuda, MD (who, sadly, doesn’t have a blog, just a Twitterfeed, it’s a journey…), with the words, “This is a beta test,” and I’m glad I did.

The beta test part is true, since I was asked by Carolyn Clancy, MD, from Agency for Healthcare Research and Quality to reprise and elaborate on a talk I gave at the American Board of Internal Medicine Forum in July for a seminar at AHRQ later this month. That was a 10 minute presentation, the one coming up is a little more full. The way I like to do these when the presentation is in evolution is practice to myself, of course, but also to test with a smart audience to read the feelings/emotions that are created (which is what I think a presentation is for - read more about this here) and see what ideas resonate well and which ones don’t. I usually tell the test audience that I’m testing, and it really helps, because it engages the discussion beyond the content, to how to make the content help other people after this group. Synergy.

Luckily, Dave and his co-students gave me the opportunity to do this.

Before it was my turn, I got to see Rick Rubin, President of Washington’s OneHealthPort in action, talking about community collaboration in the health information technology space. In my travels, I have seen that OneHealthPort is really a gem in the area of health information technology (when people find out about it). It’s company that supports collaboration among potential competitors who jointly have a business need for this collaboration. Whenever I mention that it exists on the East Coast, I have always gotten a good amount of interest in it (which I in turn forward on to the OneHealthPort folks).

I didn’t know before this day that Rick is from Boston, which probably accounts for some of my draw to his style. I think OneHealthPort should get more exposure nationally as a functional model for community collaboration and I reflected on the fact that doing business behind the Cascade Mountains in the Pacific Northwest sometimes shields the nation from some really good ideas. Place matters.

My turn - I worked to combine my work at Group Health with my work at California Healthcare Foundation, and beyond, with Participation as a theme, which is really where I have come to in terms of what I am about professionally. I think it went okay as a first run. I got great feedback from the students (all accomplished health professionals in their own right). I included some information about the 60 Minutes piece about Cedars Sinai and heparin. Luckily someone in the audience had first hand experience with this situation, and I need to adjust the presentation about this - it’s a reminder to be careful about telling other people’s stories, they know their stories better than I do (and vice versa).

One of the physicians in the class, who’s an Infectious Disease specialist, let me know that this approach to health care resonated with him as a physician supporting HIV patients, and how it was when his cohort of specialists began practicing a new way based on the needs of his patient population. I thought this was great to hear - I tell people that my cohort of physicians (Generation X) went through medical school during this time, and as a result we (I) graduated with the idea that I would work with patients who would know more than I would about their condition (which I embraced).

As far as the presentation I need to tighten it up more, and link every section to the concept of participation, and maybe a little leading on what should be done to foster it (study it in the leadership context among health providers? study it in the leadership context among patients guiding health systems? Going beyond studying participation of patients in their care). One of the parting commenters said to me, “It was very entertaining, it needs more substance,” and then, “you asked for feedback, so I wanted to give it to you.” I’ll take it, and since I’m now an East Coaster, directness really works.

I’ll wait to post the slides at the end of the month, so I can work up these ideas a little more.

Thanks again, Dave and University of Washington eMHA students for allowing me to continuously improve my continuous improvement!

Publishing has been a bit delayed on this blog (but not on my TwitterFeed, I am starting to get how each thing fits together depending on what one is doing), due to the distraction of the beauty of the Seattle summer.

As part of reconnecting with friends who are also iPhone users, I ended up participating in an application-downloading binge. “What does that application with the funny name do? I don’t know, let’s just install it and find out.” I did have the sense to stop and create e-mail aliases for some of them before signing up, but it’s otherwise interesting to reflect on the mob mentality’s ability to modulate concerns about identity exchange. That in itself is interesting - the agility of Apple’s application distribution scheme is going to change a lot about the viral use of software.

What happened next was even more interesting. I have been using Tapulous’ software’s Twinkle for a while now. It’s a Twitter-based application that publishes location information along with lifestreaming events. So, depending on where you are at any given time, it will show you your friend’s tweets, and with the press of a button, anyone who is tweeting around you. The interesting part is that if no one has tweeted recently, it will go back in time, to the location where you are.

520, Big Mountain in background (Rainier)

While driving across the WA-520, pushing the button revealed the tweets of the people who had been stuck in traffic on this notoriously congested floating bridge hours and days prior. As we crossed effortlessly in the evening, I saw the frustrations of many a driver in the past few days while in the same place. It was a sort of a “kilroy was here” - a twitter signature of a place with meaning to Seattleites (this is the bridge that connects many Seattle residents to work for a very large software company in Redmond, Washington) that would persist.

Of course there’s a tie in to healthcare. Think about all of the places with meaning in the healthcare temple - the operating theatre, the waiting room, the intravenous infusion center, the intensive care unit. If a person had used the Twinkle application in one of those places, any future visitor could pick up the tweets/feelings/emotions of that space. Kind of like an emotional geiger counter. If we did a sweep now in these places, what would we find about these environments? Would it be good news or bad? Will America’s hospitals and health care settings create “no tweet” policies for staff within their facilities? Or would they do the opposite….

What if a health care organization used this feature with intention, and asked patients to tweet their feelings during these meaningful times in the lives of themselves and their families while physically located in these places. The tweets would remain fixed to the GPS location and would be retreivable forever in the future. It’s interesting to think how this could potentially connect patients and families to each other across time and place. Imagine if you could ask, “what were the triumphs and the sorrow that happened in this room before I came into it?”

In the meantime, the next time I am in a health care environment, I will have my location aware device “on” and listening…

If anyone else here has used Twinkle or any other location aware lifestreaming application, feel free to post your experiences here.

Maurena Moran, Group Health Cooperative’s Executive Director of Web Services and Enterprise Information Management, sent me a note that our work together is now published in the AHRQ Innovations Exchange:

AHRQ - Innovations Exchange: Online Tools and Services Activate Plan Enrollees and Engage Them in Their Care, Enhance Efficiency, and Improve Satisfaction and Retention

Here’s the description of the Exchange from AHRQ:

The Agency for Healthcare Research and Quality’s Health Care Innovations Exchange is a Web-based resource designed to support health care professionals in sharing and adopting innovations that improve health care quality.

The message forwarded from AHRQ encourages linking to the Exchange and having other people comment there. I have to say that this is a great resource for the times when people have asked, “tell us what it is you did again on your project?”

Prior to the existence of the Exchange, I had a PDF document on my hard drive of an application we wrote for a national HIT award that described our work in launching a personal health record and electronic health record simultaneously across the State of Washington. We didn’t win the award that we applied for, but the effort put into the application paid off well considering the number of times I sent the document out to other people/organizations. Now there’s a real place to send people to learn more.

I think the Exchange fills a niche for large organizations who want to provide open access to the work they are doing but don’t have the right place to organize this information on service-oriented Web portals. Thanks, AHRQ, and thanks to Maureena, her team, and everyone at Group Health for changing the way we think about interacting with patients where they live, work and play. It’s a great story…

Everything in moderation, including moderation…