Jon Lebkowsky (jonl) Fri 3 Sep 10 21:24
<leroyleroy>, I think that's a key point, maybe THE key point. A physician reading everything new that's published wouldn't have time to treat patients, but a patient with literal skin in the game has an incentive to be thorough and exhaustive. Getting back to the book - Dave, you constantly refer to the support you were getting from people who were reading your journal. Were those mostly people who knew you? Or were you getting notes of support from people you've never met?
e-Patient Dave (epatientdave) Sat 4 Sep 10 06:37
Yes, <leroyleroy>'s right - the scope issue is decisive. The figure I've seen is that the average primary doc has 1500-2000 patients. Combine that with the information explosion - I recently heard 6,000 new articles a day, with 1/3 indexed for easy access and the rest "off the grid" - and it's quickly clear that it's folly to expect every doc to be up on the latest about every condition. Early in this decade the number of new indexed articles per day was about 800. Consider that a good professional doc is supposed to read two articles a day. The director of the National Library of Medicine put it this way: "If I read 2 articles a day, after a year I'd be 400 years behind!"
Jon Lebkowsky (jonl) Sat 4 Sep 10 06:43
How much of what doctors can access is also available to patients?
e-Patient Dave (epatientdave) Sat 4 Sep 10 16:49
(Ugh, I just discovered after hours away that this wasn't posted. Sorry for holding things up!) ==== Jon, re people giving support - a few new people arose, but the amazing thing to me was how my support went viral through increasingly obscure levels of my social networks. (The site I used, CaringBridge.org, sends out notification emails when I post something new; people would forward those emails.) First I heard from former co-workers, then older friends, then even college friends. Eventually I heard from people I hadn't seen since *high school*. It was really something to get out of bed some days and find 10, 15, 20 notes from people. To the extent that social connectedness boosts the immune system, this is pretty nifty for something that's free. In May I stopped in at CaringBridge HQ while I was in the area, and recorded <a href="http://www.youtube.com/watch?v=2uhNeNVUARw">an impromptu four minute video</a> of what a difference it made.
e-Patient Dave (epatientdave) Sat 4 Sep 10 17:02
> how much of what docs can access is available to patients? I can't say with any authority. A lot of things are, but a lot of it is behind a paywall at subscription journals. I've never had occasion to go looking, though. But there's an ironic twist to this: it's not unusual for a motivated patient to come up with something their *clinicians* can't find with their usual searches. That's because of a fatal (imo) limitation of the traditional quality filter (peer reviewed journals): only some genuine knowledge gets published. Some successful studies never make it into publication, and some *unsuccessful* studies throw off useful findings even though they study's purpose wasn't achieved. Plus, patients sometimes discover treatments that are useful. I'm personally close to one example. There's a nasty side effect of some cancer treatments called Hand-Foot Syndrome, which causes intense burning sensation on the skin of the hands and feet, so bad that you can't walk. Patients discovered that a henna paste makes it bearable. (Turns your skin orange, but I'd take the deal!) My friend Monique Doyle Spencer, a stage IV breast cancer patient, posted this on a simple blog, http://XelodaSideEffects.blogspot.com, and I circulated it to my patient community. The last I heard, not a single Medline-indexed journal has reported on this. The reality we all need to grasp - patients and clinicians and insurance and policy people - is that <b>the ability to create value in healthcare depends on information</b>, and <b>there's so much information today that no single source contains it all</b>, and <b>it'll be really good if we all agree to work together</b> to find useful info in every way we can - orthodox and not.
Jon Lebkowsky (jonl) Sat 4 Sep 10 20:10
On the subject of physicians and patients, can you talk about your relationship with Danny Sands as an example of what's possible?
e-Patient Dave (epatientdave) Sat 4 Sep 10 21:47
Danny's always been a leading voice in revamping how healthcare is done. He believes in using technology to process information more effectively, he co-created the PatientSite medical record system that's been in use at the hospital since 2000, and in 1997 he published the first guidelines for doctor-patient email. He just GETS IT about doing healthcare better. Check the photo <a href="http://epatientdave.com/2009/12/09/making-healthcare-better-through-participat ory-medicine/">here</a> - him and me in an examining room: his computer's always turned so the patient can see what's going on. Another example is that as soon as my diagnosis was confirmed he hooked me up with the expert patient community at ACOR. It's late at night so I'm going to cop out and say, just imagine that your doctor is totally and genuinely modern, great to talk to, not a trace of arrogance, really knowledgeable, and completely interested in sharing the knowledge and helping you help yourself. Seriously.
Jon Lebkowsky (jonl) Sun 5 Sep 10 14:28
Can you say more about PatientSite and how it works for patients?
e-Patient Dave (epatientdave) Sun 5 Sep 10 17:37
PatientSite is a so-called patient portal - a viewport, for use by patients, into various data in the hospital's systems. PatientSite lets certain patients see these kinds of information: - lab results (blood tests, urinalysis, etc) - radiology reports - prescriptions (including requesting refills online) - visit history etc. There are two BIG limitations to this vintage-2000 system: 1. It does NOT currently let patients see their physicians' visit notes. This means I can't tell what other doctors are seeing, and I can't tell if there are mistakes that I could easily correct. Robert Wood Johnson Foundation has a project underway, in PatientSite and at two other health systems, called OpenNotes, to study what happens when patients do see doctors' notes. The purpose is to address concerns expressed by many doctors that their lives would go out of control if we-all could see the visit notes and supposedly deluge them with questions or fears about complex medical jargon, lab results, etc. 2. *Most doctors don't participate in PatientSite.* This is (imo) a nasty artifact of a key structural issue in US medicine: most doctors at a hospital are independent businesses, not employees, so they don't have to do anything they don't want. And most don't want to participate in PatientSite! I have a vision of a better world.... :)
Jon Lebkowsky (jonl) Mon 6 Sep 10 06:30
Does your vision for a better world have specific use cases attached at this point? What might some of those be?
. (wickett) Mon 6 Sep 10 07:20
So many improvements to look forward to. In the Swedish health care system, doctors will print out and give patients their notes, hospital notes, surgery notes, results of all tests. The data base is central, so anyone along the way can provide as much detail as the patient requests.
e-Patient Dave (epatientdave) Mon 6 Sep 10 18:11
Jon, no, there's nothing like that in the book and I'm not holdin' anything back. :) <wickett>, yes, there was a lot of talk at Health 2.0 Paris this spring about the various ways EU countries are far ahead of the US. In the e-Patient Working Group (where JonL and I hang out), one of our best colleagues is Susannah Fox of the Pew Internet and American Life Project. She studies American behavior and has a sharp analytical mind, and she writes well. So although I didn't go to that conference last April, I was glad she was invited. In her report on our blog http://e-patients.net/archives/2010/04/health-2-0-europe-a-moveable-feast.html she said: __________ "Nobody in that room needed to hear about the basics of patient networks. Instead, it is time to talk about the power of health conversations informed by data, the self-experimentation that people engage in using information often found online, the impact of real-world experience on drug safety, and of course, participatory medicine." __________ It's funny (in a sad way): today I read about a U.S. retail company that sells tires. They save your information in a database that any other store can see, in case you need repairs or replacement. It's truly ridiculous that the U.S. hasn't achieved this in healthcare. So many improvements to look forward to, indeed!
Jon Lebkowsky (jonl) Tue 7 Sep 10 08:43
Do you think healthcare insitutions sometimes use the HIPAA privacy provisions as an excuse to avoid making data more accessible to patients and other stakeholders?
Ted Newcomb (tcn) Tue 7 Sep 10 19:30
These days I would want younger medical assistants as they seem more attuned to collaboration, both data and people. Very positive things are coming, thanks to folks like you.
e-Patient Dave (epatientdave) Tue 7 Sep 10 20:47
Ted, when you say "medical assistants" are you talking about clinicians, e.g. doctors? If so, what an interesting expression! That would be consistent with Doc Tom's view that the vast majority of our care is self-care. Indeed, the residents I've met, just entering the profession, are more inclined to using the internet in every way possible.
Ted Newcomb (tcn) Wed 8 Sep 10 19:41
Yup, that's what I meant. Seems like these days you have to be your own advocate. I see this with my mother a lot. It takes three of us to be sure she's getting good care, partly, because at her age, 87, she isn't always sure what to do. I think there is a big divide today in younger people just assuming collaboration and teamwork, versus the old way of being a "specialist".
Gail (gail) Thu 9 Sep 10 11:00
You need to be your own advocate and if possible to have a team of family members. Somebody to sleep in a chair by your hospital bed when needed. Somebody to remind the nursing staff of things forgotten. In one case with my family members, somebody to plug the oxygen machine back in, in the ICU when the plug randomly falls out of its wall socket. That at one of the "great" hospitals. This question is one thing many of us "childless by choice" baby boomers never thought of, though having kids for the purpose of caretakers when one is ill is a slightly crass motivation. It's best to have some loyal family members on your team, or excellent friends, along with health professionals. Some of that team can be your internet forum pals, obviously, but replacing the plug that falls out of the wall is a pretty vital contribution, too.
e-Patient Dave (epatientdave) Thu 9 Sep 10 20:04
<gail>, that's a terrific note. Thanks. (Ted too.) ===== Hm... on the one hand, I'm passionate about awakening awareness and about patient safety and quality issues. On the other hand, that's not what the book is about. :) Are we drifting or scope-creeping, or is this kosher?
e-Patient Dave (epatientdave) Thu 9 Sep 10 20:15
Re JonL's #63 - > Do you think healthcare insitutions sometimes use > the HIPAA privacy provisions as an excuse to avoid > making data more accessible to patients and > other stakeholders? Last night I spent 45 minutes on a lovely reply to this, and apparently the "somebody else sneaked in" monster ate it. Ugh. This leaves me Not Well. Okay so the short version is: yes, lots of hospitals and doctors do that, sometimes because they're being obstructionist, sometimes because they're trying to block customers from going to the competition, and sometimes because they don't know their ass from their elbow regarding HIPAA. And in the last group there are two subtypes: people who are just plain iggerant, and people who really care and mean well but are misguided. HIPAA itself says you can move your insurance, and thus your record. Hence, you're entitled to get your records. BUT therefore, immense privacy regulations were written - *regulations*, not in the law itself. And those regulations are what people are confused about. The regs have IMMENSE penalties for screwing up, so people are extremely gunshy. And then there are the hospital workers who are just plain rude. See http://e-patients.net/archives/2010/01/my-father%e2%80%99s-medical-record-fias co.html including the comments. For the real scoop, here's a one-page flyer about HIPAA with a Seinfeld clip in which Elaine tries to see her chart http://epatientdave.com/2010/04/23/elaine-and-kramer-play-gimme-my-damn-data/. It first aired AFTER the law was passed but before the HIPAA regs were written. Delicious timing.
Jon Lebkowsky (jonl) Thu 9 Sep 10 21:19
From the book, you seem to have had an exceptionally positive hospital experience. Is that an accurate assessment?
e-Patient Dave (epatientdave) Fri 10 Sep 10 18:18
Wellll, I can't say what's "exceptional" :-), but I generally had a good experience. The cancer treatment itself was performed by real pros. I had a strong sense that I was being monitored like a hawk. For this treatment that's important. However the facilities were not great. One week (of the 4 treatment weeks) I was in a room with an oddly shaped bathroom; it was not possible to close the door with both my IV pole and my walker. (This was before my leg broke and was repaired.) In all cases the recliner for my wife to sleep in was almost a joke. Not totally, but this was not a piece of furniture anyone would be proud to say was suitable for sleeping. Usually when I rang the call button someone would come reasonably soon. Some times it didn't. My experience was quite different during my three hospitalizations, for the surgery and for the broken leg. After my surgery the staff forgot to take out my catheter on the requested day. I later learned that leaving it in too long is a frequent cause of hospital acquired infections, which cause 100,000 deaths a year in the US. Also, the staff hadn't studied me enough to know that my leg was in the process of breaking - someone came in the day after surgery and said "Okay, time to stand up." They didn't know I needed a walker. The first time my leg broke I was admitted to a different building, and the care there frankly stunk. I rang the call bell and nobody EVER came. (Yes I rang repeatedly.) The next day my ortho doc got me transferred to another building. The second time the leg broke the care was okay, though since I wasn't urgent I didn't always get the blue ribbon attention I was accustomed to in the near-ICU cancer unit. :) Throughout the whole thing what was conspicuously lacking (GLARINGly) was care coordination. I later learned that an essential aspect of America's healthcare problem is that every frickin thing is driven by insurance billing codes, and it's hard to get people to do something if there's no billing code for it, and there's no billing code for care coordination. That's right, if my primary or oncologist or ortho or anyone wants to take responsibility for OVERSIGHT of my care, making sure all the specialists and wards KNOW about my whole case, they have to do it as basically volunteer labor, because they can't get paid for it. This completely sucks, and is one reason I'd like to see the industry's finances changed SOMEhow so this isn't true. I've heard (but I have no way to verify) that the problem doesn't exist in so-called integrated systems like Mayo, where all the doctors are employees, on salary, instead of having their own separate billing universes. --Having said that, it's also all relative to the alternatives. I had two accommodations that are not complicated but made a big difference and are still not a given elsewhere: 1) Wifi. Free wifi in most of the buildings. (Today it's throughout the hospital; this was early 2007.) I was able to stay connected with my peeps, and that's a very good thing. 2) *Good* food, with a decent menu, on demand, 24/7, including for guests. Wow. I mean, not GREAT food, but good food, not your typical hospital mush. And I had a third thing that's still a rarity most places: PatientSite, my patient portal. I could view various pieces of my medical record. I was especially interested in my scan results and lab test values. Today, though, I eagerly await the day when every patient can see his/her care plan for the day: what meds are to be delivered when, planned doctor visits, etc. Patients can be a second set of eyes. And when I say patient, I'm using it as a collective noun: everyone on the customer side of the professional services that are delivered in a hospital. When I say patients can be a second set of eyes, that includes my wife and anyone else who's helping keep an eye on my case. Positive? Yes, for sure. Exceptionally? Dunno. Uniformly superb? Not by a long shot. :)
Julie Sherman (julieswn) Fri 10 Sep 10 18:37
I have had to spend a lot of time in hospitals throughout my life. I have had asthma since i was 5 so had many ER experiences during asthma attacks, and then sometimes was admitted when the attack did not reverse. When I was 14 I spent 6 weeks in a hospital for the removal of a lymphangioma tumor from my thigh. It was 2 pounds and I had had it from birth. Later on I spent 3 weeks at an allergy clinic in Dallas. Anyway, that coordination problem is always present. From nurses trying to give medication that I know I don't take, bandaging a wound site incorrectly because they were not taught the protocol, etc. Early on I learned to be my own best advocate. This last stay in the hospital, for the esophagectomy, I was really worried about not being mentally present after the surgery. One person I talked to said he had no memory of the first five days after surgery. So I had a family member sleep in the room for the first night. Luckily I was completely mentally present from the day after surgery onward. Actually, I found Duke Medical Center to be pretty good on care. There was one nurse who I thought probably should be in a different line of work, but that was it.
e-Patient Dave (epatientdave) Fri 10 Sep 10 18:45
Holy cow. What stories you have. Julie, sounds to me like you really should do a "Why I'm an e-patient" post for us. You may have just written 2/3 of it right there. Let me know when you're ready.
. (wickett) Fri 10 Sep 10 21:41
Wasn't coordination of patient care, as a billable expense, intentionally omitted from the new health care law?
e-Patient Dave (epatientdave) Sat 11 Sep 10 06:13
<wickett>, I don't know - that didn't get my attention.
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