This makes sense from so many perspectives—scientific as well as humane.

We have no doubt scientifically that people forget a lot of what is said to them, and studies show that this is particularly true during healthcare visits. In fact, one study found that, by the next day, patients forgot about 30% of what the doctor thought was important. When we know scientifically that this is the case, how can we not insist that patients bring in tape recorders to help them remember our instructions to them?

Another fact is that 30% of Americans are functionally illiterate. (So, if you’re reading this right now, you’re not in this group—but you may still have a kind enough heart that you think that these people should also get the benefit of being able to remember and follow their doctors’ advice.) Remember:  those great patient information handouts don’t work for this group.

Then there are the ADD/ADHD people, and I have a few in my family, who absolutely cannot communicate to me what the doctor has said to them. Just as in other circumstances, the doctor is talking but maybe they are distracted by something on his desk … and so it goes. And these are really highly-functioning people as a rule—they have jobs, homes, and college degrees. Our educational system makes accommodations for these people with ADD—and they also need help in the doctor’s office.

And here’s another fact that makes tape-recording a good idea:  people do not get and treat their illnesses in a vacuum. Their social systems—their spouses, families, and friends—help them adjust to and handle their illnesses. And when allowed (and encouraged), this social network can have a profoundly positive influence on how the patient handles his illness. But they’ll need to know what the doctor wants in order to be able to help.

Just imagine how this conversation could go:

             Wife:  “I’m worried because you’re eating eggs every morning.

            Husband:  “The doctor hasn’t said anything about eggs.”

            Wife:  “Let’s put that on the list of things you’ll ask him next time.”

            Husband to doctor, on tape:  “My wife is worried because I eat 2 eggs every morning.”

            Doctor to husband, on tape:  “I think 4 days a week is okay for you. Egg beaters or something besides eggs on the other days.”

           –Then husband and wife listen to the tape together, and wife and husband are both on the same page in knowing what the doctor wants.

Alternatively, the doctor might have said, “Eggs every day—no problem!”, and then the wife’s concern is alleviated—and isn’t there healing and peace in that as well?

And doctors, how better to have compliant patients than to make sure they remember your advice? 

We haven’t even talked about patient and family satisfaction (and the resulting psychological and actual health value) that comes from having a sense of involvement and control in your own healthcare.

Now—how simple, valuable, and just plain commonsensical is this idea:  taping a doctor’s advice so you can better remember it, share it with your family, and follow it? Why haven’t we thought of this before?

It doesn’t matter. We’ve thought of it now, and UTMB has initiated the project.

Go to www.utmb.edu/olivercenter to see a video on this project. Also be sure and click on http://www.utmb.edu/olivercenter/projects/current/pvrp/pvrp-comments.asp, where you’ll see the first round of comments from UTMB patients about the project. They’re heartwarming.

Now for a little update. This project was started in May, and in August, UTMB put the project on their Oliver Center website. A friend of mine read about it, and just yesterday, when she had to see a doctor in Houston about her leg that she broke over the weekend, her husband said to the orthopedist, “UTMB is doing a project where they’re giving tape recorders to patients to help them remember the doctor’s advice. Can we bring a tape recorder next time?” And the doctor said, “Sure.”

Awesome.

We used to get news from a newspaper, from the top of the hour news broadcast on the radio, or from the TV evening news at 7 or 10.  Frankly, that would be quite enough news about the H1N1 influenza, because in addition to that news, we are in the “Internet World” (go e-patients!) and we can also go to the Center for Disease Control (CDC) website and get all of the info we need about the H1N1 flu.  That website is so filled with facts and figures that I really want to point you to the best information for you there, and that is the www.cdc.gov/h1n1flu/ page, then click on the left sidebar on “General Info,” and then on “H1N1 Flu & You.” 

Everything you need to know is there in that handout.  If you read that five-page handout, you will know more medical and common-sense information than most, and probably more than you need to know.  Print it out and keep that handout around the house and refer to it when you have a question.

You can also click on the other General Info subjects on the left sidebar there if they interest you, or even go into the “Info for Specific Groups.”  There’s even more information for patients under “Guidance.”  There’s just no dearth of rational, scientifically-based advice on H1N1 flu.

But twenty-four hour news stations have warped the news.  There’s only so much rational, factual news to report—but when you have 24 hours to fill with news—well, it starts with the real news, but in order to turn it into 24 hours of it, the facts and the syntax of anyone being quoted are tortured endlessly, with tiny pieces of “questionable information” teased out, questioned, and commented on, and then a few “expert guests” are asked to make a few comments, then there is a discussion, and then the whole salad is tossed again.  Now this is entertainment, no question—but if you’re listening to one of these discussions, I just hope that you’re not coming away from them with what you think are the real facts.

I have clicked through some jewelry shopping stations, and been amazed at how much of a story a salesperson can weave around the selling of one piece of jewelry.  I listen sometimes because I’m fascinated at the storytelling:

“Well this silver ring here is beautiful.  You know, I could wear this really easily to a dinner party.  It would look great with silver, but then a lot of people like to mix gold with silver these days.  Oh, and you know I’m going to a bridal shower next week, and I’d also feel really comfortable wearing this ring there.  Also at a tea.  Wouldn’t this look nice as you were pouring steaming tea into fine china cups.  Especially from a silver tea set!  And yet it’s casual enough I would feel comfortable wearing it to one of my daughter’s parent-teacher conferences …”

They are weaving a story of their own making around this silver ring.  And that’s what I feel these commentators on 24-hour news stations are doing—they are weaving whatever they can into the real facts so that they can keep your interest and intrigue you with new possibilities that were never really involved with the flu or the real medical facts in the first place.

This type of story-weaving is fine for selling silver rings.  But we shouldn’t get our news this way. 

So try to avoid believing there’s substance in more news than you can get from regular news broadcasts, reputable print news, and selective Internet research from reputable sources.

(And if you really want to/need to stay as up-to-date as you possibly can on the H1N1 flu, go to www.cdc.gov/H1N1flu/press for all press updates, and also note the paragraph right under “H1N1 Flu (Swine Flu) Press Updates,” and use that link as well.)

In a bold move that could make a significant impact on the quality and length of Americans’ lives, a team of journalists at Hearst Newspapers have investigated and now printed a valuable exposé of what would appear to be one of the least-known problems with our healthcare system:  mistakes made in medical care is the leading cause of accidental death in America.  See their first article at “Dead by Mistake.”

Authorities put the number of deaths at about 100,000 per year from medical errors that occur in hospitals, and many believe that estimate is too conservative by half. 

Another 99,000 die from infections that they acquire while in the hospital, and that’s a statistic from the CDC.  And the death of 100,000 Americans per year is more than that from the yearly deaths from car accidents, breast cancer, and AIDS combined.

“Almost all of these deaths, experts say, also are preventable,” the article reports.

This fact has been known for at least ten years now, and several large organizations are working diligently with hospitals to make the quality of care more reliable, and medical care safer.  But this effort is moving slowly.

But what if each U.S. citizen took that medical error fact to heart, and then committed to being more involved in the healthcare of themselves and their loved ones?  It’s my belief that that one change would save more lives overnight than will ever be possible by trying to do it bureaucratically. 

It’s my goal for you to learn the right way to be involved, so that you and your loved ones can avoid these common, everyday healthcare error tragedies.  I’ve seen too many of these happen, and I’ve met too many family members who have lost a loved one.  After the fact, the pain is unbearable, knowing that it was a preventable death.

Please don’t become one of these statistics.  Yes, it’s more work for you to become more involved—but in the face of these facts, don’t you think it’s worth it?

My personal thanks to the many journalists and researchers who brought this information to light:

Principal writers on the “Dead by Mistake” Hearst project: Cathleen F. Crowley and Eric Nalder. Hearst project team: Olivia Victoria Andrzejczak, Kyla Calvert, Don Finley, Laurie Kinney, Terri Langford, Melissa Fletcher Stoeltje, and Lance Williams. Hearst project editors: Phil Bronstein, David McCumber, Bob Port, Carmen Cano, Jacquee Petchel, Steve Gonzales, Dean Betz, David Sheppard, Audrey Lee, Wendy Wilk, Smiley Pool, Shaun Neville, Stephanie Milner, Lisa Stevens, and Joe Stalvey.  Hearst project contributors:  Debra Friedman, Paul Grondahl, Brian Lockhart, and Daniel Tepfer.  Hearst project research:  Kelly Guckian, Sarah Hinman, Julie Domel, George Hernandez, and Levi Pulkkinen.

Realize that doctors have busy schedules and aren’t always up on the latest, best, and nationally-recommended guide­lines on every­thing medical. (Read: you might know more than the doctor does if you read up on your illness.)

     “Today, no one clinician can retain all the information necessary for sound, evidence-based practice. No unaided human being can read, recall, and act effectively on the volume of clinically relevant scientific literature.”^a

     “Physicians have always had a professional obligation to base their deci­sions on the best available information … The disap­pointing reality, however, is that physicians still don’t regularly search the medical litera­ture themselves … Physicians don’t, and never will, have that kind of time to look for the answers to most of their clinical questions them­selves.”^b

If you have a chronic illness, like diabetes, heart disease, asthma or high blood pressure, do Internet research on re­putable Internet sites about your disease. See what the rec­ommended treatments and guidelines are. When you’re diagnosed with an acute illness, look it up on the Internet, and see if the diagnosis fits, and what steps are recommended for someone with your condition.

Don’t be afraid to use this information! Studies have shown that today’s average consumer is very savvy about what Internet sites to believe in, and what Internet sites are bogus or just “anyone’s” opinion. You can figure out that www.MayoClinic.org is reputable, and that www.IAmTheUltimateHealthExpert.com may or may not be.

No other group of patients in history has had this tremendous opportunity to level the playing field and give the patient such a broad, egalitarian chance to access medical information and be an enormously helpful participant in the increasing complex world of healthcare. And it’s not just that it gives you this opportunity—it’s also that you must use this opportunity to get yourself the best and safest healthcare. Re-read the above quotes—your doctor just can’t keep up with all the latest information.

See more information about how you can use the Internet to your advantage at http://e-patients.net.

a.  Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, D.C.: National Academy Press, 2001, p. 25.  

b.  Davidoff, Frank, and Valerie Florance. “The Informationist: A New Health Pro­fession?” Annals of Internal Medicine 132(12) (2000): 996-998, italics added.

And don’t think for a moment, “Well, the doctor has every­thing about me in my chart. I gave him the medical records from the other doctor I was seeing, and he has the lab tests, x-ray reports, and everything for the last ten years.”

Here’s the problem—he has everything, but no time to or­ganize it. It’s just a pile of papers.

And even if your doctor is one of the few that keeps that record truly organized, if you’re seeing more than one doctor, it’s almost certain that you don’t have a complete record of your health information anywhere.

If you don’t take the initiative to organize your information, then no one else will. 

But don’t just go typing out a list of things that you think are important about your health.  What doctors need is for you to give them your medical information organized in the way that makes it valuable for them to use.

Go to the ”Personal Health Record” link on the sidebar for an online format that will easily help you organize your medical info in the way that doctors like to look at it.  Your doctor will be so appreciative when you bring in your printed-out medical information in the exact way he likes to have it organized.  And you’ll get a good start on better medical care.

     “Missing clinical information has been implicated in injurious ad­verse events … Such harm could include otherwise avoidable drug interactions or duplications, missed or delayed diagnoses, missed immunizations, unnecessary testing and procedures, and the downstream effects of such events … Other studies have demonstrated that errors related to missing clinical information are common and can adversely affect patients.”^a

     “Physician groups, hospitals, and other health care organizations operate as silos, often providing care without the benefit of com­plete information about the patient’s condition, medical history, services provided in other settings, or medications prescribed by other clini­cians.”^b

a.  Smith, Peter C., Rodrigo Araya-Guerra, and Caroline Bublitz et al. “Missing Clinical Information During Primary Care Visits.” Journal of the American Medical Association 293(5) (2005): 565-571, italics added.

b.  Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, D.C.: National Academy Press, 2001, pp. 4, 9, 20, italics added.