The Saga of My Right Foot

So, I need a new right big toe, or at least a new joint between first metatarsal and the medial cuneiform, which has totally deteriorated, giving me only 5 % functionality. This of course is throwing off the rest of my foot not to mention the rest of my body. It's not stopping me from my long walks and yoga every day, not yet anyway. So I'm thinking of getting it "arthrosurfaced" with a HemiCap since apparently the mess is too great to fix. Anyone every hear of this? It looks like they put a screw in your toe joint. Ouch.

I'm bringing up my toe because it relates to medical records. My long-time podiatrist can't find my old records and has moved practices a couple of times so he doesn't really have some of them. So, I don't know whether this has been getting worse over time, or what. Now, if I'd been empowered to keep my own records, including the x-rays, I'd still have them. Plus, I'd like to think that I'd have been more mindful and not let it get this bad.

All things considered though, this is really minor!

Youth Voices Roundtable

"How did you hear about the youth group you're in?" That's one of the questions we asked some 20 Montgomery County young people at Wednesday's Youth Voices Roundtable, the third such event held by the county's Commission on Children and Youth of which I am a member. The answer, of course, was "from other kids" for the most part, and from adults personally inviting them into the programs, which ranged from support groups for the children of African, Latin and Asian immigrants to a school-based program for girls to a Jewish youth group. I Twittered a little bit during the event, which you can see in the left hand column here.

The young people sat in the middle of the room (a great space donated by Strathmore Hall) in a circle, with the adults (including the president of the county council, the head of the county's HHS, reps from the school board, etc.) sitting quiety in the back. The kids' conversation was moderated by three of their peers, high school students who are on the commission.

Our original goal several years ago was to learn from the youngsters. Then we discovered that they needed to talk to each other. And, it was clear from Wednesday's event that more of that is needed.

My main takes aways:
Several of the kids said that if their programs didn't exist they would be getting into trouble. One girl even pointed out that crime in her neighborhood has gone up since they closed the YMCA there. We really hope this got through the county big wigs.

We adults think kids are a lot more sophisticated and know more than they really do. One girl even admitted that she learned alot about the "bad things" that could happen to a girl in the world from her support group. With the Internet and TV and teenage attitude, many of us adults have been snowed into thinking kids don't need to be taught basic life skills. Wrong. Or as they say, fail. Yikes. More needs to be done on the basics.

So while the kids kept saying that they only learn from other kids, the conversation did come around to the fact that they need adults, as one boy smiling ly admitted, for organization, direction, knowledge and safety ... but we should be cool or invisible.

All of the kids were really impressive. As I noted in my Twitter comments, the Asian boys were late. When they arrived, one of the African American girls blurted out: "You're in high school? You look so young!" accompanied by some giggling. I was thinking, wow, here we go with steriotypes. But after the meeting, the young lady approached the young man, shook his hand and engaged in a conversation about their high school. Cool young lady!

It would have been interesting to hear more about their families and their perceptions of each other. I'm very curious about inter-ethnic dynamics in this age group. But time was limited. All in all, a great event.

On a personal note, I was also really impressed with the BBYO Jewish group and proud of how much my community does to help its teenagers, even though we are constantly feeling like its never enough.

New Sounds

How lovely it is walking around my neighborhood every day, saying hello to people bringing their kids home from the bus, walking their dogs (like me), raking leaves. When I run out of NPR podcasts--Wait, Wait, Don't Tell Me, Fresh Air, This American Life, etc. -- I've started listening to New Sounds from WNYC in New York. It's a great mashup of traditional instruments and modern experimentation. The world is one on New Sounds. Sometimes it is really phenomenal, and the host, John Schaefer, is great. When I lived in The City, I went to his live tapings. By listening while I walk, I am experiencing my Bethesda present with my eyes and nose and my past and the rest of the world with my ears. Anyway, check it out.

Patient Participation

"Medical Records" is huge area. Which records are we talking about? A single doctor's records about individual patients? Prescription records? A hospital's records? Records that are interoperable among doctors, specialities and institutions? Records about individual patients by name? Records about a specific condition? Anonymous records across large populations that can we aggregated and used for valuable research? What functionality should all of these have and how can they be integrated? These are huge issues.

On a simple patient level, I can tell you that no doctor or institution is keeping track of my records in a way that will be useful to me. And, I don't see that happening any time soon.

I've come across a very interesting organization that I recommend you check out: the Society for Participatory Medicine. www.ParticipatoryMedicine.org, which is taking this thought to the next level. The patient is at the center of her/his care. I learned about this organization through the Twittering of a very interesting guy who goes by the handle epatientdave. Check out his recent webcast. http://bit.ly/1cYdKo

Experimenting with Google Health and Microsoft Vault

My body parts are all over Washington, DC, and probably New York City. Or, rather, x-rays of and test results about my body are scattered who knows where. I'm very lucky; I'm very healthy. I've had the occasional minor health problem: a sprained ankle and a wort. I've messed up both of my wrists at one time or another. All small stuff. But I haven't been keeping track of it. Shame on me. So I'm trying out Google Health and Microsoft Vault, both of which appear to be in Beta form. And, they have serious short comings. Their user interfaces are clunky with very few directions. The excel spread sheet I gave me new primary care doctor is almost better and was definitely easier to make.

Wouldn't it be great if I could have all of my x-rays, lab results, medications, medical procedures, family history all in one place? Strictly from a patient perspective, I think this would be fabulous. It would give me a great sense of control over my health. So, I'll be playing with those products and, I hope, others. To see whether they develop into more useful tools. More in the future...

Why do I care about EHRs?

Many people have asked why I'm focusing my efforts on electronic heath records. Computerizing medical records has been on my mind for a long time based on personal experiences. I don't know anyone who has died or been badly mistreated as the result of handwritten records, as Denis Quaids children were.

• But when I visited an Aunt who was dieing of brain cancer, I discovered that her primary doctor had no idea what the others doctors were doing and couldn't figure it without calling doctors and the pharmacy.
• Several years ago, I asked one of my doctors for my records, which he gave me and which were totally unreadable. Useless.
• A friend of mine recently had moderately serious surgery at a major university hospital. Over the weekend, she was in terrible pain. Instead of going to a highly praised emergency room close to her home, she drove to the prestigious hospital where she had been treated, thinking that its emergency room could pull up her records and understand better what might be causing the pain. Wrong. The emergency room said it would take two days to get her records ... from their own hospital. This is just plain wrong.
• Plus it drives me nuts having to write my family history, etc. every time I see a new doctor and they still don't really have enough information to make fully informed decisions.

Of course, there are a lot of other aspects of health care that drive me crazy: doctors not coordinating their efforts; insurance company and medical institution bureaucracies; the need for patient advocates; the fact that a hospital cannot tell you how much your treatment may cost, etc.

But given my technology background, the medical record area seems appropriate. And despite the huge complications -- security/privacy, interoperability, standards, the cost, etc., this area seems like a relatively simple piece of health care reform where I could have a huge impact. I also think that patients/people need to have more awareness and control over their own health care, which having a formal record could encourage that. But more on that another day.

Physicians' Records Same today as Hippocrates

So says DAVID BLUMENTHAL in an interview with The New York Times' David Pogue.

http://www.nytimes.com/2009/10/15/technology/personaltech/15pogue-email.html

Great quotes:
"To be a 21st-century physician, to be a 21st-century hospital, we can't record data the same way the Greeks did in 500 B.C. We've gotta move to use the computer to support our work. And that's what we're trying to do."

"Computers can help doctors be better doctors. They can help hospitals be better hospitals. They can help patients take control of their illnesses, not only by making the information available in a reliable way, but by adding tips and reminders and personalized messages about what to do to improve your health, or what tests to order if you're a physician, and what drugs to use or to avoid."

That's just the beginning.