But also, I believe the term is used around here (in the Web 2.0 world) to describe having a “crowd” (not an ordained special group) generate the answer to something – in this case, a definition. That’s how it’s described (pretty roughly) on Wikipedia.

btw, thank you very much for being here and joining in. You’ve started something, which is good.

Hey, everyone, who’s going to be comparing and contrasting these tools?? Or has someone already written a comparison?

What do you think about NoMoreClipboard.com?
(I have no personal experience with this site)

This is a secure https site that is available now for patients to collect their medical history and their test results. The site seems to offer faxing of whichever information the patient selects that will be sent to any doctor or any hospital the patient identifies. In addition, the site offers for a fee one time visitation rights to any ER doc the patient selects.

Conversely, doctors who subscribe can sponsor their patients and thus wave those patient fees.

Ann

Dear Gilles,

In the interest of crowdsourcing, the site also allows the patient to give visitation rights to family, friends, or others whom the patient chooses.

Thanks,
Ann

2 remarks.

1. Your question about the internet tools. That’s why we so frantically promote the use of an integrated EHR (=EMR+PHR).
2. What about information on prescription? I thought I(x) had become more common in the US. I have been trying to get some awareness about it in Europe with the help of my friend Don Kemper, but not much result so far.

Lodewijk

But even before we move to create the Society I would like all of us to do something VERY important. I have shamelessly used Ted and Susannah methodology and I wrote a post on e-patients.net to get an hopefully very active crowsourced definition of Participatory Medicine

I am thrown off by Ann’s questions because I am so used to being asked the question by physicians, “How do I not engage in these activities?”

I think this means change is happening. And also that I’ve been thrown off by Ann’s questions.

Ann, I think you’ve just done the most important thing which is ask questions, like “why? (are things the way they are) (can I not practice medicine the way my patients want me to)

Dave, thanks for stepping in with some guidance while I figure out what to do next….the idea of a Society sounds better and better every moment,

Ted

When I first read the white paper in January it blew my mind, what a Copernican shift it caused. Chapter 2 was the most impactful, with its “seven preliminary conclusions.” Only within the past month has #7 really sunk in: the best way to improve healthcare is to make it more collaborative:

“We cannot simply replace the old physician-centered model with a new patient-centered model… We must develop a new collaborative model that draws on the strengths of both systems. In the chapters that follow, we offer more suggestions on how we might accomplish this.”

So now, much to my astonishment, I’m going to stop flogging “patient-centered medicine” and shift to collaboration – or, as more senior members of the Working Group have been saying all year, participatory medicine.

An answer to one question: if I can view my test results online, why would I care about getting a paper copy?

But perhaps for people who don’t have theirs online, as I’ve had for years at Beth Israel Deaconess, that’s a higher priority.

It was invaluable to me, when I was cancerous last year, to give my password to medically knowledgeable friends & family so they could look at my data. It gave me a real sense of having a broader network of support. And if I understand correctly, there’s a fair body of literature documenting that feeling supported is good for the immune system.

Have you had a chance to read the white paper, or my synopses?

I’m entirely available to discuss this in whatever way works for you. This is a time of bold exploration and invention, and nothing could interest me more than finding out how to make it real.

Ted has my cell phone, or email me at epatientdave at comcast dot net.

Thanks. Yes, I found PCPCC.net very interesting. Thanks for this lead. These companies — IBM, Merck, etc — describe a long-term vision, complete with payment recommendations, such as payment should “pay for … coordination of care.” I like their vision.

Now, I’m looking for a way to implement e-patient today. Short of health care reform, is there a way to put e-patient into practice today? For instance, is e-patient impossible in the current pay structure? How can doctors and patients learn together as partners? A doctor knows medicine well. A patient knows his or her body well. Together, how can we build a shared understanding of the patient’s condition?

Which Internet tools do we need to build this common understanding together? For instance, should patients automatically request copies of all of their test results? Should patients maintain a current list of their allergies and medications with a printout of potential drug-drug interactions for their particular drugs? Could an e-patient society facilitate such an exchange of information in a way that saves doctor time? For instance, could this society direct patients toward information sources that are respected by doctors worldwide, such as UpToDate.com? What do we need to build an e-patient healthcare system today?

Thanks,
Ann

Fabulous question! I have lots to say about this at another time, but for starters:

1) Are you familiar with the work of PCPCC.net? Some of their slides talk about how severely unworkable today’s load is. (I recommend dynamite, not living more artfully in the shoebox.)

2) The point of the e-patient approach (at least as described in the e-patient white paper) is not at all about doctors listening more and talking more, it’s about patients being actively engaged and being much more active in learning about their conditions outside the “fortress walls,” if you will.

In my case my e-patient communities (though I didn’t yet know the term) taught me far more than my physicians did. (And my physicians were tops.) More than once, I raise eyebrows when I asked focused and reasonably-informed questions.

Much more to say, but not now – hookey’s over.

Many thanks for your encouragement and ideas. After talking with prospective employers about e-patient, I have concluded that the next step we need to do is to describe how e-patient can become financially profitable.

Perpetually short of time, doctors worry that listening to the patient and sharing decision-making is too slow. My colleagues wonder, how do you see 20 patients a day, if you have long discussions with each? In my experience, talking to patients improves care tremendously and patients are always very respectful of my time. We have a thousand ways to keep communications short. Now, we need to learn how to listen and share decision-making in a reasonable amount of time.

When I donated blood last month, the Red Cross interviewed me by sitting me at a computer alone, where I answered sensitive questions about HIV, sex and all. The nurse there told me that patients are more honest when talking with a computer versus being interviewed by the nurse. This is consistent with my reading; studies show that people are more honest with the comptuer.

The US government is trying to force doctors to use computers. Still, most doctors keep hand-written charts. Would it be possible for e-patient to collaborate with e-clinician or another vendor to make computer-based patient histories part of the electronic healthcare paradigm?

If we could find a way to make e-patient a cost-effective way to practice medicine, then it would have a larger following among my physician colleagues.

Thanks for your work to bring e-patient into our reality.

Ann

Thank you for your understanding. I really look forward to join forces to achieve our common goal, empowerment of the patient!

Lodewijk

I for one would be honored to be involved with you. We must remember to blog and tweet with additional frequency next week so you can stay abreast of things. Be well,

Ted

Societies can be a good thing, and the officialness makes it easy for physicians to have memberships paid for by their employers, which is a nice way for the health system to support this new way of relating for physcians and patients (and nurses, and all care providers).

I am excited to do this “with” all of you. I read your comments right after my experience with Anna today, and it was a powerful reminder of what and who we are doing this for. Always pleased to be a fellow force of nature with high expectations for myself/ourselves,

Ted