The Wisdom of Patients Report
The California HealthCare Foundation published a report the other day entitled The Wisdom of Patients: Health Care Meets Online Social Media (PDF) which is a nice overview of the current state of Health 2.0. The report is four chapters long: Social Networks Come to Health, What is Health 2.0?, The Business of Social Networks and Health, and What’s Next for Social Networks and Health? More inside…
E-patients Unite To Document Problems with Generic Drug
For over 30 years at The People’s Pharmacy, we have been guided by a respect for people’s ability to make informed decisions about their health. We have always welcomed input from consumers, but we had viewed our website as an information dissemination system: we posted articles and readers posted comments. That was the extent of the interactivity. We had never used the site as a beacon of e-patient activity – until now.
E-patients have recently drawn national attention by documenting significant problems with a generic drug - problems that the FDA hadn’t caught. …
Why Doesn’t My Doctor Answer My Email?
Because he or she is afraid — afraid of being overwhelmed by one more responsibility, of not being reimbursed for time spent answering emails, of patient privacy, of HIPAA, and of course, of legal liability if they set an expectation of replying to emails in a timely manner and — for technical or other reasons — don’t get to the one that results in a patient’s death or disability.
The Associated Press has the story, It’s no LOL: Few US doctors answer e-mails from patients, and it’s an ironic read:
Wikipedia’s Arcane Rules Censor Health Information
I don’t know of a living soul who views Wikipedia as any type of authoritative resource. Why? Because no single person takes responsibility for any article’s content or quality. Some articles are heavily and well-edited, while others are much less so. At any given moment, you can’t say whether an article you’re reading is the highest-quality version on that topic or not. You can hope it is, but you have no easy way of knowing or telling.
What happens when you edit something going against one of 43 Wikipedia’s esoteric editing rules? (Wikipedia refers to these rules as “policies,” including the gem that every one of the policies can be ignored it if “hinders improving Wikipedia.” I can only assume that’s a relatively subjective standard.) It usually gets reverted fairly quickly. Oh, and you’d better read up on the over 65 style “guidelines” too, because if you violate one of those, you’ll find your edits lost more quickly than you can say “Engorged bureaucracy.”
Wikipedia has gone from “An encyclopedia ANYONE can edit!” to “An encyclopedia that you may be able to edit, if you follow all of our rules and don’t argue with us. Even if you’re an authoritative expert in the field.”
Recently, Gilles Frydman, head of the non-profit cancer support community ACOR asked the Wikipedia editing community that links to e-patient medical communities should be allowed as an exception to the guideline that links to forums should not be allowed. (By the way, this same rule discourages links to any site that requires even a free registration to view the content, ruling out links to most major newspaper articles that could give additional valuable information on the topic.)
E-patient Interview: Amy Tenderich
Amy Tenderich is the engine behind DiabetesMine, “a gold mine of straight talk and encouragement for people living with diabetes.”
Hearing her speak at Health 2.0 was a highlight of the conference for me and she just co-authored a book, so I wanted to bring her over to our page and ask a few questions about how she came to be such a kick-ass e-patient.
CNN Takes on Doctor Ratings… And Gets it Wrong
CNN has recently published an article about what to look for in a doctor rating website. Unfortunately, they repeat some misconceptions and errors about these services.
The most serious error is the claim that the greater volume a website has of doctor ratings, the more reliable or statistically valid it will become.
Google Says, “Don’t Forget Your Keywords So Our Software Gets It!”
Popular Mechanics, of all places, has an exclusive, rare interview with Udi Manber, the head of search quality at Google. You’d hope that if anybody understands how the Web and search should work, it would be this guy.
Sadly, you would be wrong.
No Secrets
Ted Eytan’s April 16, 2008, iHealthBeat column lays out the benefits of providing real-time, secure access to health records: “As our profession understands the benefits of patient partnership better, more medical groups are discovering that there aren’t compelling arguments for keeping patients’ information secret.”
E-patient Interview: Stirrup Queen
Cheryl Miller has written an excellent article, “Blogging Infertility,” in The New Atlantis. She brings up a lot of themes that have been echoing throughout my other reading: a once-silent group newly empowered by the internet; teaming patients with similar profiles; home-care tips (there could be a whole blogroll on injections, btw, starting with AmyT , heading over to Spicy Sister, then Lisa).
One of my favorite parts of the article was an explanation of this alphabet soup:
I am Tertia, I am 35 yrs old, dh is 30, TTC 4 yrs, dx = PCOS, stage II endo, irregular AF and I don’t O on my own. 3 x injectible IUI’s, all BFN. IVF #1 = cancelled due to falling E2’s. IVF #2, zero fert, rescue ICSI, BFN. IVF#3 = BFP, but ectopic, 3 x FET’s = BFN, IVF #4 = BFP, but MC 8w3d due to T21, IVF #5 = BFP, twins, loss of one at 21w, the other born 25w6d, died after 10 days in NICU.
If you squint this could be the sig line for an ACOR subscriber or other e-patient community member.
Another favorite outcome of reading the article was my reconnection with Melissa, creator of the blog Stirrup Queens and Sperm Palace Jesters, whom I met standing in the check-out line at Peggy Orenstein’s reading of Waiting for Daisy last year in DC. Melissa was kind enough to answer a few questions about being an e-patient, evaluating treatment choices, and combating stereotypes.
Patients Rating Hospitals? What Next!?
Dr. Robert Wachter has an interesting essay over at THCB entitled, Should Patient Satisfaction Scores Be Adjusted for Where Patients Shop? As health care in the U.S. continues to move in the direction of tailoring itself to patient satisfaction, the question becomes — how do we make such ratings more reliable and fair? The answer is, “Not easily.”
Patient satisfaction in a hospital is a many-varied thing. You could have the rudest doctor in the world (ala TV’s “Dr. House”), but if he ends up saving your life, how badly could you rate the rest of the hospital? You could end up dying of a preventable infection from the hospital, and yet, who’s going to capture your unhappiness once you’re in the grave? You could have the nicest, most kindest surgeon in the world, but if he leaves a sponge in you and has to re-open you back up to retrieve it (but tells you it’s just “a routine check to ensure everything is healing properly”), is your hospital rating really going to help others understand that hospital may not be the best one to visit?
Wachter’s point is a valid one — that we need to adjust hospital ratings, and even ratings within the same hospital, based upon the patient’s experience. Outpatient is usually a very different experience than inpatient. Staying in a psychiatric bed is usually nothing like staying in the ICU. Dealing with the madness of the E.R. is nothing like going in overnight for a routine colonoscopy. A hospital in a poor urban area is generally going to be more poorly rated than one in a rich suburb.
Researchers have long recognized the importance of rating “apples to apples.” If you try and compare the efficacy of an antidepressant, for instance, with say, an asthma inhaler, I’m sure you’ll get two very different results. But they shouldn’t have been compared in the first place, because they have virtually nothing to do with one another.
The same is true as we experiment with new ways to provide consumers with more information about the hospitals in their community. These rating systems should be carefully and scientifically devised, normed, validated, and then used only for “apples to apples” comparisons.
And the same can be emphatically said, too, for online ratings of virtually anything. Almost no online ratings’ systems have been normed, empirically validated, or have any sort of random selection occurring. This means that virtually every rating system you come across online — whether it’s for medications, or doctors, or, well, even a TV — is not really a scientific measure on which you should be basing your decision. The population of people submitting these ratings are not a random sample, and so what you see and read online should be taken with a grain of salt.
Eventually, all of these things will be sorted out and we’ll find some happy medium. Until then, we’re left with a lot of pseudo-science and questionable data.
white paper
e-Patients:
How They Can Help Us Heal Healthcare
