Colleague in patient empowerment Susannah Fox e-mailed me this question and so we thought we’d start one.

Jay Parkinson, MD, linked to a discussion happening on Digg in his blog. E-patients is also hosting an informed discussion on their blog.

Is it cliche to say that this is evolutionary, not revolutionary? I think it’s of benefit to patients and our profession that a dialogue has started around moving health care data in a standardized way to a place where people can aggregate and do things with it to improve their health. A year or two ago, it was hard to think about a standardized extract of a medical record that you could send from an EHR system except in very specialized situations. Now you can do with several partners, Google being the most recently announced option.

I didn’t even think about writing a special post about it, even though I thought, “Cool, this work will support the ideas I am exploring with the California Healthcare Foundation, that patients can be involved and active in their care, across health environments (health system, work, play).” So rather than writing about it, I just incorporated the possibility into the work we’re already doing, which is great.

I think of privacy as a state of being that allows a person to feel comfortable seeking health care regardless of the issue. This is a good place to be, and when that state of being doesn’t exist, people will seek it out, even if it means not seeking needed care, which could be devastating both to patient and health system. At the same time they seek comfort, they also want to build confidence in their ability to manage their health by having as much information their care as possible. In systems where patients have good access and trust, the care is better, and it feels great (and is great) to provide and receive care in that setting. Both things are important, we should not sacrifice one for the other; every patient deserves to achieve their life goals through optimal health.

See: The State of the Facebook Platform | 20bits. The number of active users has declined 27 % since January. Early adopters are leading the pack out.

I deactivated in December, 2007 (See: “I deactivated my Facebook Account, is LinkedIn Next?“), reactivated for a few days earlier this year, and then deactivated again. For good.

I did cancel my LinkedIn account, too. As I discussed in a post about it, if everyone has their own blog and RSS feed we can just communicate through those.

And I still think every patient should have a blog that their physician has access too through the electronic health record.

Over at one of my favorite blogs, e-patients.net, e-Patient Dave is starting a dicussion about what Health 2.0 “is;”: e-patients: Participate in defining “Health 2.0″

I started things off with a definition based on one created by The Economist, which I’ll repeat here:

Health 2.0 is the transition to personal, participatory health care. Everyone is invited to see what is happening in their own care and in the health care system in general, to add their ideas, and to make it better every day.

Feel free to suggest your improvements here, or there. I enjoy the idea that patients like Dave and readers of e-Patients will create improvements that can be incorporated.

If someone asked you, “What is Health 2.0?” Would you feel comfortable answering with the definition above? If not, how would you change it? Be sure if you would to tell a little bit about “why?” The story of how we get here is as important as the where we got to.

Businessweek: The Mac in the Gray Flannel Suit

This week’s cover of Businesweek appears to triumphantly announce Apple, Inc.’s comeback (sort of) into the enterprise, even if Apple isn’t actually marketing to that sector.

For Mac afficionados, this is a big change from Businesweek’s former pronunciation of near-death (see The Fall of An American Icon, from 1996, or the Apple Death Knell Counter from Mac Observer).

Okay, so Apple is back; however, the opportunity here for enterprise IT is not so much to bring on a new platform, it’s to explore more thoroughly the idea of “employee asset ownership.” I didn’t find much searching for this idea on Google (maybe there’s a more official name for this? If there is, please add it in your comments), except that a few companies like BP and Unisys are experimenting with it.


Read the rest of this entry »

Health 2.0 is the transition to personal, participatory health care. Everyone is invited to see what is happening in their own care and in the health care system in general, to add their ideas, and to make it better every day.

When I went to medical school, a person’s ability to influence the health care system was linearly correlated with the length of their lab coat. Actually, in my medical school, medical students and attending physicians all wore the same length of lab coats, because I trained on the West Coast. I was exposed to the labcoat length protocol when I was a medical student and a new group of residents began training at our hospital. One of the residents was obviously from an East Coast medical school because she asked me permission to do something for a patient, and it took us both a few minutes to realize that she thought I was the “in charge” doctor because I wasn’t wearing a short lab coat. Neither of us wanted to relate in this way, and we transformed the relationship right there, in a beneficial way for our patients.

Flash forward to 2004, when my organization implemented an enterprise wide electronic medical record system for doctors, nurses, and staff. All of a sudden, we were on a common platform, and every member of the team had a contribution to make in each other’s learning of the new system. Once, when I was ordering an injectable medication, a nurse colleague came over to me and said, “here, let me show you how to do that, Ted.” Now, this new technology was creating an obvious platform for colleagues to teach each other, regardless of role. It was and is great.

In 2008, in organizations like ours where patients are regularly participating in the creation of their health record via secure e-mail and online health profiles, and participating in the creation of ideas and their health care stories inside and outside of our health care system, health care improvement is now more democratic than ever. When we combine that with management systems like LEAN (Toyota Management System) that support respect for our customers and our colleagues and use tools like visual systems and daily improvement methods, it is possible to see what the difference between Health 1.0 and Health 2.0 is. The technology has definitely stimulated this change by making it easier to participate, but the lasting intervention will be the participation of patients, their families, and every stakeholder (health care providers, businesses, philanthropies, non-profit associations, etc) in the improvement of our care system.

In 2006, The Economist referred to the transition from Web 1.0 to Web 2.0 as the transition from mass media to personal, participatory media. I think the same is true for Health 1.0 to Health 2.0.

I have spoken about the idea that physicians in my generation (Generation X) are a group that trained during an explosion of medical information. We are a group that is challenging the mental model of “omniscient physician” - we don’t want to hold all the answers for our patients because we’ll fail if we do. We want to learn something new from every patient, every colleague, and every industry, every day, so we can be good educators, too. Now we can, and we are.

I’m not an atopic/allergic person by any stretch of the imagination, having never suffered from allergies. However, I got a good dose (pun intended) of what it feels like to be in Washington, DC recently, when I had an acute flare of environmental allergies. As a family physician I understand the toll that allergies can take; at the same time, it’s as impressive a condition as any that requires a person to stay indoors for fear of their eyes swelling shut.

Given that I’d never had anything to this degree before, I wanted to figure out the best approach to control things. I also found it challenging to explain to people that yes, this was my first time, and I truly didn’t know what to do about it in the most acute phase.

So I started looking.

A very well regarded medical database that I use started off with this description of the condition:

Allergic conjunctivitis is a relatively benign ocular disease that causes significant suffering and use of healthcare resources, although it does not threaten vision.

I’m not sure if this was supposed to be reassuring or comforting from the perspective of a patient. I would say on balance it was not. At the same time, this is a very factual statement made from the medical perspective, which is the audience this is for.

My next task was to figure out if taking supratheraputic doses of non-sedating antihistamines to control symptoms had any basis in experience or science. I was only able to find that a 400 % dose of loratidine is not associated with a fatal heart arrythmia. That was very important for me to know (I’ll leave the details out here). I also needed to know if it’s typical for patients to need this much to control symptoms. I came up empty, except in conversations with friends who said, yes, this can be the case.*

*Disclaimer: I do not recommend a supratherapeutic dose or off-label use of any medication. I am just illustrating the uncertainty that comes from an unexpected dose-response experience.

As things started to calm down, I wanted to find out if there’s something going on in my community that makes this a one-time event for me, or a prelude to more allergic challenges. I was able to find pollen counts, and a news story that allergies are flaring in Washington, DC. Otherwise, I depended on my short conversation with a staff member at the local Safeway who said that she, too, was having her very first allergy flare. Ok, so that means I’m not alone. Oh, and every allergy medication aisle in Dupont Circle was nearly empty.

What does that leave a patient like me with, though? With a few side conversations, rumor, gossip, luck, and an entire health care industry that can’t provide me with more information than the fact that the standard dose of loratidine and ceritrizine is 10 mg per 24 hours.

In my profession’s defense, I was able to get enough information to quickly change my topical ocular antihistamine to one that’s less likely to cause rebound (ketotifen), and better for long term control - but from my “special” medical sources. Nothing in the pharmacy said, “take this one if you’re really having problems.” If I had not switched, I would probably be sitting indoors still.

So I’m writing this post about my first time allergy flare in Washington, DC, so that it can be picked up by others in the blogosphere who wonder if they are alone (keywords: allergic, allergy, allergies, first-time, first, conjunctivitis, flare, DC, Washington). I am hopeful that Health 2.0 projects (like PatientsLikeMe.com) will help fill in the gaps that medical knowledge leaves us with: Am I the only first-timer in my community (bad sign for me, it may happen again)? How well does that drug work? How much do you really need to take to get relief? Are we getting better? This will work very well as a partnership, so patients and physicians can learn what happens between FDA approval and patient experience, the most crucial part of health.

It’s being said that pollen counts are going to massively increase in the next few weeks in DC. That’s okay, Washington - my like for you is still blind, even if you nearly made me go blind.

Let me know what you think!

Ending Secrecy: Physician Makes Case for Full Disclosure of Health Records - iHealthBeat

If you are interested in innovation, I think this is a good podcast worth listening to - and the actual audio is more useful than the printed version.

I listened to it the day before I attended the latest Patient Centered Primary Care Collaborative, in Washington, DC. At the meeting, I was fortunate to run into one of my role models, Susan Edgman-Levitan, PA, and we talked about the idea that the Medical Home is about improving the care of patients where they spend most of their time - where they live, work, and play. We can help patient-centered care flourish by including ideas from everyone involved in the care, including nurses, doctors, allied health practitioners, eye care, oral health care, behavioral health care, just to name a few.

I liked what Jack said in the podcast, that in a company, there has to be

a sense that in every soul of the company, the idea that everybody innovates.

Toward the end of the podcast, Jack gets quite fired up about the idea that innovation can’t be regulated to the chosen few. My experience reinforces this. In the area of health information technology, this is critical. When most people think about implementing HIT, they think about the implementation period. The most powerful part of HIT is what happens after implementation, and using a management system like the one developed by Toyota Motor Company (as we are) can allow an organization to turn HIT into an organization wide innovation engine - if they capture all of the ideas of everyone involved in providing care and put them to use. To not do so is to waste one of the most valuable raw materials for growth - ideas and time (and most importantly our patients’ time).

One other conversation that has come up in the last several days is about generational changes in approach. Many of the Generation X and Generation Y colleagues I have been talking with were raised in a professional environment where we were not going to have all the answers, and we are uncomfortable being accountable for them. We want to share the power of coming up with the answers with our provider colleagues and our patients. This is not to say that our baby boomer colleagues don’t have this desire, too. I think we are stimulating each other to do what they’ve always wanted to do, and involving patients, their families, and all practitioners, all specialties and roles, is really going to make a person’s medical home special.

Feel free to take a listen and let me know what you think:

Finding Innovation Where It Lives

I recently pulled several articles to help leaders understand Web2.0 better. That’s what’s in the links below.

The image is one that I snapped while taking a flight recently. It reflects the accommodations an already troubled industry is having to make to support our health (or lack thereof).

• CDC trends in obesity 1985 2001 - CDC trends in obesity 1985 2001. Disturbing.
• A List Apart: Articles: Take Control of Your Maps - Useful article about integrating mapping visualization
• A List Apart: Articles: Accessible Data Visualization with Web Standards - Really nice article on simple data visualization using CSS
• VM — Being There, Mar 01 … Virtual Mentor - The use of telemedicine technology, while convenient, can at times be inadequate, as shown in the portrait painting entitled The Doctor, where the physician stays at the bedside of a gravely ill child and offers his presence as comfort to the family. Virt
• Notional Health Server | Economist.com - A flagship service adrift - problems with online booking at the National Health Service
• Health 2.0 | Economist.com - Technology and society: Is the outbreak of cancer videos, bulimia blogs and other forms of â??user generatedâ?? medical information a healthy trend?
• Social networking | Joined-up thinking | Economist.com - Social-networking sites are not just for teenagers. They have business uses too
• Sources and acknowledgements | Economist.com - Helpful links for Web2.0 research from the Economist
• What sort of revolution? | Economist.com - Both good and badâ??but it’s too early to say in what proportions
• The wiki principle | Economist.com - Are many minds better than a few?
• Compose yourself | Economist.com - Journalism too is becoming interactive, and maybe better
• It’s the links, stupid | Economist.com - Blogging is just another word for having conversations
• Among the audience | Economist.com - The era of mass media is giving way to one of personal and participatory media, says Andreas Kluth. That will profoundly change both the media industry and society as a whole

Congratulations Kaiser Permanente.

While many PHRs in the market are finding it difficult to attract users, Kaiser Permanente has long offered its members access to key features in managing their health online at kp.org.

This is a very important statement. The experience of Kaiser Permanente members challenges the idea that “patients don’t want PHRs.” They absolutely do - if the PHR helps people manage their health and connect to their health care team.

Two Million People Using Kaiser Permanente’s Personal Health Record