It looks like the US gov health agencies are catching on. The web-based Question Builder ( http://www.ahrq.gov/consumer/ ) may not go far enough for the people of this forum, but it's a start.


Video available at http://www.medscape.com/viewarticle/565951 (requires free registration)

From Medscape General Medicine
Webcast Video Editorials
How Do We Involve Patients in Their Own Healthcare Decisions?

Posted 11/30/2007

Carolyn Clancy, MD

As physicians, we are beginning to see patients becoming more involved in decisions about their care. Even though this is a major change to how we practice medicine, it will, over time, create a genuine partnership between doctors and patients.

Research shows that patients who left doctors' offices with even 1 unanswered question reported the lowest level of improvement in their symptoms. In addition, these patients reported being less satisfied with their care. Other studies show that patients who ask questions and become more involved in their healthcare are more likely to follow clinicians' instructions and report better results.

However, many patients are reluctant to speak up -- because they don't want to admit that they don't understand something, because they are overwhelmed by their illness, or because language, health literacy, or cultural barriers get in the way.

Today, health care providers have come to recognize the importance of clear, ongoing communication, including questioning why a particular treatment decision was made. We need to engage our patients in the same way. To that end, my agency, the Agency for Healthcare Research and Quality, has developed a new public awareness campaign with the Ad Council to encourage patients to take a more active role in their healthcare.

You will soon begin to see or hear public service announcements urging patients to ask questions of all their health care providers. The education campaign also includes a Web-based Question Builder at http://www.ahrq.gov which helps patients create a list of questions for their next medical appointments.

As physicians, we have an obligation to help our patients understand the decisions that affect their health. While it may challenge our way of practice, it is the right thing to do.

I'm Dr. Carolyn Clancy, director of the US Agency for Healthcare Research and Quality, and that's my opinion.

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A big problem I see with this is that a large number, possibly the marjority, of doctors not only haven't been TRAINED to LISTEN to their patients, they haven't experienced listening to their patients, nor do they have the TIME to listen to their patients. Their experience has been to run as many patients as they can thru their office on any given day. I read a study, and wish I had kept a copy, that determined that MOST doctors do NOT HEAR PAST the THIRD symptom or complaint voiced by their patients.

I'm thinking there is a long way to go before the majority of the doctors even acknowledge that it might be in the patient's best interest to be informed and involved. As was pointed out in the comments on the medscape site, many times today, if one goes in armed with information, one is labeled a hypochondriac. Or one gets an eye roll upon mention of internet research.

Yep. I recently asked a doctor about 3 abstracts I'd read at PubMed about a particular medicine I had been scripted. He asked what PubMed was!!!! When I told him the NIH's NLM listed abstracts from peer-reviewed medical journals I was told to stay away from PubMed because "I would not understand"!!!!!! Needless to say we didn't accomplish much during the visit.

I receive my medical care from the local Naval Hospital, so I change doctors as they rotate through the base.

Most of them have been willing to listen, even if they can only spend 20 minutes with me. What I have learned to do is to prioritize my concerns and write them down before my appointment.

Slinky, I assume that that was the last time you saw that doctor? If he doesn't think you can understand a simple abstract, how does he expect you to understand and follow his directions?

Susan

I have to say I have found gems!!!
My doctor generally schedules most appointments for 30 min. and is always at least 30-45 min. behind. He does not finish the visit until you have no more questions. When you have a question, he answers thoroughly, and if he doesn't know the answer directly, he'll either go to his library and find "the book" or will go online right in the examination room and we go through the information together. He also is very good at explaining the medical gobbly gook into english so that we both can understand the information.
This one is my PCP.
My neurologist (sleep specialist) is pretty much the same. I have an appointment with her tomorrow to discuss the last 6 months of my treatment and she already knows that I'll be bringing data printouts as well as a bunch of questions. I want to know if my treatment is addressing the fact that I showed centrals during PSG and titration....and since the machine can't detect them, how do I know treatment is effective??

Both docs seem to promote educated patients. The philosophy being that if I as the patient know what the treatment is, I'll be more likely to adhere to it.
Since I was young, I have always had the philosophy that doctors are generalists. When I have an affliction it is my responsibility to learn as much about it and the treatments as possible so that I can intellegently consult with the doctor on the plan of attack.
I have had some doctors that totally disregarded the fact I knew as much or more about my own affliction than they did -- I didn't see them again. We know our bodies better than the doctor does, so it's important for them to listen.....But has has already been said, they don't learn to listen.
Listening 101 and 102 should be required courses for MD's......

I do hope it comes to pass that all doctors will become more like the two I have found -- and I do realize that I am extremely lucky to have found them!!!!!

my couple pennies
cheers
goose

goose, you do indeed have gems for doctors!

Slinky wrote:When I told him the NIH's NLM listed abstracts from peer-reviewed medical journals I was told to stay away from PubMed because "I would not understand"!!!!!!

Whoa!!!

Wonder if he understands what the words "arrogant jerk" mean?

Daffney, thanks for that link. Very interesting.

Sometimes it's very frustrating to show up on time for an appointment and note the sign on the wall that he's an hour behind.....BUT, you know he'll spend just as much time with you as you need and by the time he's done with you he could be an hour and fifteen minutes behind.....It's just the way he is. He refuses to be rushed by "numbers".....and some days he works until 6 or 7pm!!! I may as well plug the system -- He's in the Sutter system in the Auburn California area....
I need to pull my data, print my reports and prepare for appointment with sleep doc tomorrow.....



cheers
goose

goose wrote: I may as well plug the system -- He's in the Sutter system in the Auburn California area....

Glad you did mention the name, goose. I think it's a good thing when cpap users tell about their good and bad experiences and where either kind happened.

You're telling where you personally are happy with the care you get. That's not like plugging a place you own or have a financial interest in.

My docs are also gems. My endocrinologist spent about 45 minutes just listening to me. He was very interested in my CPAP therapy and thought that patients should monitor their own data

My sleep doc always schedules each patient for an hour. He practiced psychiatry before establishing the first sleep clinic in Ft. Worth. He's a great listener and is also much in favor of pro-active patients. He's extremely concerned that my therapy reduce the stress on my heart.

Now, if all of my docs were like these two, I'd have it made!

20 mins? 45 mins? Hour? Most of the doctors I have encountered, (with 2 current exceptions) that have agreements with insurance companies, have to see 6-7 patients an hour! It takes a lot of research on the part of the patient to handle sometihing like fibromyalgia in 7 minute sessions. They try ship you off to a psychiatrist, but if it really is fribromyalgia, the psychiatrists can't fix it either! If your body is missing an very important chemical, no amount of "thought therapy" will fix it. Fibromyalgia is brought on by a depletion of dopamine in the body. Stress is a major factor, but lack of restorative sleep is also a major factor in dopamine depletion. I have seen many posts on this forum from people also suffering from fibromyalgia. anyone interested can send me a PM and I will send them a link to the doctor with the info on this.

Al V