Please read these quick posts being submitted in real time from an event today.
Contains much important (to me) info on what’s going on to improve healthcare. Every e-patient advocate should be aware of this, I think. For instance I never heard of the 1999 report “To Err Is Human,” which it seems we should be citing in spades. It amplifies one message in Chapter 2 of the e-patient white paper:
We have overestimated the hazards of imperfect online health information. … We can only conclude, tentatively, that adopting the traditional passive patient role … may be considerably more dangerous than attempting to learn about one’s medical condition on the Internet.
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Dave, the report you mention, “To Err is Human” is one of two seminal reports from the Institute of Medicine (IOM) about the need to redesign our healthcare system. The second report, a follow-up entitled Crossing the Quality Chasm: A New Health System for the 21st Century is even more relevant and important to all of us. Your remark shows how compartmentalized this entire field of healthcare is. Most of the public health conferences I have attented and almost all the cancer-related meetings I have followed mention one or both of these reports in a way or another. But the public is unaware of their existence and their importance.
How can you talk with health professionals about redesigning our healthcare system if you don’t know the reports on which they base most of their decisions?
The point made at the conference is that many physicians DON’T base most of their decisions on these reports and, like Dave, haven’t read them or even heard of them.
I for one, don’t think patients need to read them to get a sense of the basic problems. You can see those problems on every visit.
That being said, they are certainly worth reading.
Paul,
I am not entirely surprised that most doctors haven’t heard or read the reports. It is the demonstration of how broken and insular the system is! But it forces the question “How can young doctors integrate the culture of quality control and safety if they do not know where it is coming from?”
I somehow disagree with you about the need of patients to read the reports. At the very least, the patient population should receive a well written summary of their content. I followed a link of one of your blog entries from the conference to the Josie King Foundation and found such a summary, entitled Patient Safety: Understanding the Science of Safety.
The necessary changes in the various components of healthcare systems can only happen if there is a groundswell of demands coming from the patients (those whose bodies are in jeopardy everytime a medical mistake is made). As Danny Sands wrote last week “I do agree that patients are keys, but they really aren’t paying the bills in our healthcare system. The most inovative and patient-centric organizations are places for elective surgery (plastic surgery, vision corection, etc.). But as patients assume an increasing role in paying for healthcare services they will be viewed more as the customers, and then they will have more of a voice.”
Gilles,
> Dave, the report you mention, “To Err is Human” is one of
> two seminal reports from the Institute of Medicine (IOM)
> about the need to redesign our healthcare system.
> The second report, a follow-up entitled Crossing the Quality Chasm:
> A New Health System for the 21st Century is even more relevant
So, this shows how severely this group (the e-patient scholars working group) has its head stuck up its vision. :) We’re sitting here with all this great knowledge, doing virtually nothing to make it known in the world of the people who need it (patients).
I never knew Doc Tom, but from what I’ve heard people say about his generosity and motivation to create change in the world, I think we collectively are not propagating his vision as much as we could. The “existence proof” is that almost nobody I know is aware of those seminal books. (I’ll test that by adding them to the documents I mention to people, and see whether their heads nod.)
> How can you talk with health professionals about
> redesigning our healthcare system if you don’t know
> the reports on which they base most of their decisions?
Certainly – but in the same way, how can we talk to patients about being empowered if we don’t broadcast what we know, which would empower them? That report is 9 years old.
So, this gives rise to an excellent question: where does patient empowerment start – with the doctors or the patients? Suggestion: perhaps this group could have an “educate the patients” initiative and an “educate medical professionals” initiative.
I just went and downloaded To Err from Gilles’s link above. It’s a short little thing, which I’ll read this weekend, and summarize here.
The Chasm sequel is $45, which I can’t do right now. It’s also 360 pages. It would be great if someone who has the report could post a synopsis here, like the ones I’ve been doing on my blog for the chapters of e-Patients: How they can help us heal healthcare.
Paul,
> I for one, don’t think patients need to read them to get a sense of the basic problems.
> You can see those problems on every visit.
As I talk with people everywhere about this whole field, I sure encounter people who are frustrated with the system – but almost always I find that people don’t have the slightest sense that there’s a ton of evidence of breakdowns and failures.
The prevailing feeling, which explains both those statements, is “Medical people are smart, highly trained gods! Why aren’t they performing excellently every time?? How could this error have happened??”
Said differently, in my experience people approaching a (scary) hospitalization system are not thrilled to be told they need to watch out for human errors.
In my experience, it takes something to shift people’s perspectives to see that medical professionals are fallible humans and they do screw up sometimes AND that doesn’t mean they’re all criminals AND it means that you and I should darn well learn to move ourselves to the center of the care transaction.
I’ve written several times about how frustrated I was that no single individual at Beth Israel Deaconess was responsible for me as the total patient, responsible for coordinating communication between my nephrectomy team and the people who knew about my bone mets etc.
In my experience it’s a successful eye-opener for people to learn about the data in the white paper.
And, as a pie in the face for me, I just discovered that our white paper does cite “To Err is Human,” in Chapter 2, which is the one about how e-patients can add real value to the healthcare transaction healthcare professionals can’t go it alone anymore. But in my reading I didn’t notice the title because it’s in the footnote, not the body. My bad on that.
Bottom line, Paul, my experience is that patients become more empowered and more proactive when they become educated about the issues with facts and figures. And very few lay people are. Very few.
Gee, the danger of email-type communication. You both so overreacted to my comment. But, on the merits, Dave, you cannot expect most patients ever to read all this stuff. People have lots to do in their lives. And most people, really, don’t ever think they are going to be patients. It is only after they arrive that they realize they are!
Would it be helpful for them to have read this material? Sure. Are they likely to? No. Should it be required reading for everyone in the profession? Absolutely. Is it? No.
Should the hospital provide a sumamry of the books when people arrive? I don’t know if that is the best info we can provide at that moment, in that there are lots of other things that might be more useful, e.g., Nick Jacobs’ new book, but I’ll think about it.
> overreacted
This is probably a “one man’s ceiling is another man’s floor” thing. We here are pretty vigorously thinking / working on the shift to empowered patients, often with an eye to “What’s it gonna take?” I know you support that general direction.
Before I got involved with this movement I was one who’d rant about malfunctions and errors. Today, better informed, I don’t rant, I explain, with the intent of empowering and enabling. Data like this helps in that effort.
Thanks for the dialog, Paul.
Paul,
my goal is really to have a constructive exchange with, one of, if not the most vocal proponents of openness in running a hospital. Any negative connotation you may read is only an artifact of this method of online communication.
You made me thinking. How about an addendum to the patient bill of rights?
Since most of us (the e-patients working group) will come to Boston in the fall, maybe we can have you for dinner to discuss how best we can cooperatively work to improve the public awareness of these important issues.