Community Platforms: Here Comes The CIO - Interesting commentary about social platforms being integrated into IT shops. Yes, it has taken a long time. This reminds me of Nicholas Carr Big Switch philosophy - what will happen to IT in big enterprises in the future, if the Web2.0 wave creates more demand for lightweight solutions than an organizationally based IT shop can manage/understand?

Details of iPhone 2.0.2 Firmware 3G Connectivity Improvements? - Mac Rumors - An attempt to harness the power of crowds to avoid a tragedy of the commons, 21st century style. I thought this was interesting because of (of course) a parallel to health care. AT&T initially didn’t tell anyone why it was so important that every user upgrade to the latest firmware - now it appears it’s because those who don’t will unnecessarily tax the cell towers serving a specific area. Imagine the behavior this might create - “Are you using iPhone 2.0.1? Would you mind upgrading to improve everyone’s service?”

With that little bit of awareness, maybe this situation might happen. How about someone tapping a colleague on shoulder to say, “Are you seeing a specialist for that condition? Would you mind going to see your primary care physician first to improve everyone’s health care experience?” Those of you in health care will quickly understand why this doesn’t happen due to the incentives out there, but it’s a nice thought.

Let’s see if Apple and AT&T’s foray into community organizing around resource use (intentional or not) provides any lessons for us.

• Living Well : Transforming America’s Health Care - A nice overview (I think) of the current state of health care, produced by the Federal Health Care team at IBM. It also details what IBM is doing to support the wellness of its 500,000 employees worldwide.

These are Adam Szerencsy, MD and Neil Calman’s slides from the recent discussion in Oakland, “Patient Online Access in the Safety Net,” hosted by the California Healthcare Foundation.

Adam and Neil are from the Institute for Family Health, and as you can tell, have learned a lot in providing online access to their patients in New York City.

This presentation had special meaning for me for several reasons. The first is that Neil’s organization was the first to host me outside of my integrated health system environment, to learn about applying PHRs to the care of all patients. The second is that I got to watch Adam lead the rollout of IFH’s patient portal from the initial thinking through to watching him prepare his patients for its eventual rollout, when I got to watch him practice in Bronx, New York. You can read the story (and see the pictures at this link) about what that day was like. I still remember it as strong affirmation that there are really exceptional physician leaders among us, who with the right tools can be freed to do great things for their patients and their communities.

I spied bike sharing in Rome earlier this summer. Now DC is getting national attention as the first American city to start a program. Interesting comment/issue at the end in this movie about bike helmets. They are not provided, and they can’t be mandated

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.

Continuing on, in the publication of the stories of some of our nation’s leading edge safety net organizations in the area of patient online access, these are the slides shared by James Kahn, MD, from the University of California, San Francisco Positive Health Program. I had previously blogged about their myHERO patient portal, which is helping patients with HIV/AIDS manage their health better. Note the work underway on leveraging cell phones. There is a lot of innovation going on in these settings, because innovation is required to connect with patients who want to be connected. That’s a great feedback loop.

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 is fifth of a multi-part series on a patient’s experience managing a chronic condition, in this case hypertension. A diagnosis has been made, and our patient has hopefully followed up and has hopefully been maintained on appropriate therapy (there is a 1 in 3 chance that this is happening). We are now in the maintenance phase, where it is recommended that a patient be checked once per year..

Click on the image to see it larger size

Patient Story (Frydman)

For today’s post, I am going to paste a dialog I had with Gilles, which contains some follow up questions I had about a new process for managing blood pressure

Ted: Ok, very helpful -

Gilles: I’d say amazingly helpful! See remark at bottom.

Ted: So what if the doctor said, “Your blood pressure in the office is high today. I don’t know if you really have high blood pressure though. Can I show you how to check it at home and will you check it twice a day, in the morning and at night, and then we’ll take the average and decide if you have high blood pressure?”

Would this make you anxious?

Gilles: I don;t think you can answer this question in a unidimensional fashion. It would probably be anxiolytic if this is the first time I heard of HBP. If this is what I hear at a repeat visit I almost certainly will be ready to hear 10 times more details about HBP. But if during the first interaction the doc would say “I don’t know if you really have high blood pressure though. Just in case maybe you could read the following information about HBP” and then give me some URLs like the Medline Plus entry or this one: http://www.ash-us.org/about_hypertension/index.htm. I think it would definitely prepare for a much better interaction the next time I saw the doc. In fact in case of diagnosis of HBP or changes of BP, I would definitely advocate for this method followed by a second visit not too long after. That is basically what my PCP does with me, whenever there is a change in BP. Follow-up in 1 week/10 days.

Ted: [It turns out that checking throughout the day isn't really helpful, twice a day is best]

Gilles: That’s good to know. I didn’t know. This is not trivial info and is not easy to find if you are actively looking for it. But it should definitely be part of BP home monitoring guidelines. If you check http://www.medicinenet.com/script/main/art.asp?articlekey=89718 you will notice no mention of what you just told me.

Ted: Let’s say your blood pressure was high this way. If the doctor said, “I would like to have you be in charge of checking your blood pressure, once every 3 months, for just one 7 day period, twice a day.”

Is this a routine you would be willing to follow?

I do not understand. You mean choose randomly a week during this 3 months window and get 14 basic readings as a result?

I would probably freak out, wanting to get feedback about the results ASAP.

Ted: What if the blood pressure cuff didn’t come from your doctor - what if your employer came to you and said, “For our employees who have high blood pressure, we are going to give them free cuffs to allow them to connect to their doctor.” Do you think this would or would not be a good way to change the ideas about measuring blood pressure, from a privacy perspective?

What if the messages about blood pressure being harmful came from your employer too - would this be welcomed, or would you think, “this is really something I should only get from my doctor?”

Gilles: I am certainly not an example for this. I would certainly distrust any involvement of my employer in health matters.

Ted: Last question - is this discovery, that BP was important to you, something you needed time to make, or do you think you would have made a change sooner if the initial conversation was different?

I think the conversation was not optimal at all. He is a real friend and a great doctor but evidently not the greatest communicator. But the conversation about learning about HBP and developing knowledge about it could very well be done by a trained nurse assistant. I strongly believe that instead of immediately treating it would have been much better to give me a solid dose of info RX. I am sure that I would have been early on a much more compliant patient.

Ted: I looked up what I know about time of day for blood pressure for you - I don’t have an accurate answer about apnea, but it appears that “morning” and “evening” have been selected because they correlate best with the possibility of stroke in the future, actually better than what your doctor would measure during the day.

I found this as well

“In persons successfully treated with CPAP, cessation of treatment causes blood pressure levels to increase, while restarting treatment causes blood pressure levels to fall again.”

from here:

http://www.aafp.org/afp/20020115/229.html

I think your presence will be very helpful next week.

Gilles: I don’t think I would have found this great article. So here is a clear example of how a 2 minutes interaction between a somewhat informed patient and a physician can produce real results. My family has a real history of apnea and I am convinced that there is a real connection. The input from a physician becomes more and more important as one starts to ask precise questions about the potential reasons for the HBP. Yes the internet is great but we all know there is a limit to the benefits. At some point the filtering done by an expert becomes fundamental. Maybe the internet has just shifted the level at which the filtering does occur.

Clinical and Public Health pearls (Houston-Miller and Eytan)

• Patients are at risk for non-persistence and poor control if they have less than 1 health care visit per year or do not have blood pressure in the last 6 months.
• The overall US control rate is 36.8%; The Healthy People 2010 goal is 50%.
• This translates into 10.7 million Californians, with 3.3 million with controlled hypertension, a gap of 7.4 million people. (source)

Comment

Where is the data? and What’s Missing? From the conversation above, it appears that there isn’t good understanding about how to monitor blood pressure from home, either on the part of patients, or on the part of the medical profession. Prior to reading the AHA position paper, I did not know that a protocol existed for doing this accurately, and I would gather that most physicians that recommend home monitoring do not provide the guidance that is recommended by the American Heart Association, or desired by our patient.

The impact of this is that a patient may not monitor at the right times or with the right technique, resulting in changes to therapy that are inaccurate. In terms of what’s missing, without clear guidance from a physician besides, “Come in to see me and we’ll check it in my office,” the guideline or protocol is implicitly stated that blood pressure measurement is a physician-centric activity, even if the physician recommends home monitoring.

I of course welcome counter arguments to this hypothesis!

To close things out on the current state of affairs, here’s a slide show of all the pieces put together. Go through them as a group and notice where the data is in each case. Is it localized to the patient? Is the patient supported in engaging in the management of their condition outside of the medical office visit? And what about the stakeholders that are represented but not participating - the connectivity providers, the social networks. Can or should they be involved?

Final question: Should this current state continue? (Loaded question. Hint: Look at the results we’re getting with this approach)

This is a nice video from Consumer Reports Health of a patient who is unable to get health insurance coverage, because her physician has coded a diagnosis of “chronic obstructive pulmonary disease,” instead of “asthma.”

From time to time, I get asked, “what’s the business case for patients accessing their medical records online?” In this case, it might allow them to keep bringing business because they could alert their doctor to inaccuracies in their medical record which would allow them to keep their coverage. There might not be an inaccuracy in the first place - when we know our patients will see what we do, it changes our behavior.

In this case, the patient’s business case is clear.

From time to time, I also get asked, “will I get calls/e-mails from patients with questions about what’s in their medical record?” After seeing the impact to this patient and her family, I think this is the kind of e-mail or phone call a physician would be happy to receive.

Kudos to Consumer Reports Health for making their content embedable (is that a word?).