And I have just discovered what I think is the latest and best for many patients.  As a physician, I have subscribed to UpToDate for many years, which is an online service with a yearly subscription fee, where I can get the most up-to-date medical information to use for my patients (information in books is several years out-of-date). 

And now, UpToDate is offering this to patients as well.  If you go to www.uptodate.com and type in your diagnosis, click on the "Patient Information," and it will give you useful and free information.  But if you want detailed information---if you want the information that your doctor should be using---then you can pay a $19 or $45 fee for a 7-day or 30-day subscription to get as much information from them as you want for that time period.  (I have NO financial or other ties to UpToDate.)

This is such a boon to patients, to be able to finally see what their doctors should be doing for their illnesses.  Hurray for the Internet and all the good information patients have now at their fingertips.

And at our www.CautiousPatient.org website, we’ve tackled some of the diseases for you, so you can find out just what you need.  And we’ll keep that information flowing as quickly as we can.

Once you find the information you need, read "Chronic Illness Mismanagement" (the next blog) for a few ideas on how to then get what you need from your doctor.

Is it worth it? Only you can decide if you want to be fully-treated to live your longest and healthiest life, or partially-treated and suffer the downsides and serious consequences that result.  Is it hard work for you?  SURE!  Is it worth it?  Your decision.

What will my doctor say? Most doctors (I would say definitely more than 90% of doctors in practice) have no idea that the quality of healthcare is so low.  They have their hands full, and really aren’t up-to-date on quality healthcare and patient safety issues.

I believe the best approach is low-key.  Do you really want to confront your doctor about quality healthcare issues, or do you just need to find out what you need, and then go in and ask specifically for that.

I don’t find any benefit at all in a confrontational approach.

AND don’t take in your whole sheaf of print-outs from the Internet!  You may have a file—but keep the papers mainly out-of-sight.  Just have one page out where you have written or circled what you need to get from the doctor that day.

Footnotes and Additional Information on This Issue (Please forgive the inconsistent footnote numbers and letters I am using here.  I'm just making sure that I'm keeping the right quotes with the right authors in a document that keeps expanding when new studies are released.)

There are recommended guidelines on the correct way to treat many chronic and acute illnesses. An important 2003 study selected 30 short-term illnesses, chronic ill­nesses, and preventive care issues and measured how often optimum interventions were prescribed. They found that pa­tients received, on average, only 54.9% of recommended care.  McGlynn, Elizabeth A., Steven M. Asch, and John Adams et al. “The Quality of Health Care Delivered to Adults in the United States.” New England Journal of Medicine 348(26) (2003): 2635-2645, bold added.

“Overall, participants received about half of the recommended processes involved in care.”^3b 3b. McGlynn, Elizabeth A., Steven M. Asch, and John Adams et al. “The Quality of Health Care Delivered to Adults in the United States,” New England Journal of Medicine 348(26) (2003): 2635-2645, italics added.

“We now know that half of Americans fail to get effective treatments they need, at least a third receive treatments of little or no benefit, and 10% or more are significantly harmed by preventable mishaps.”³ 3. Leape, Lucian L. “New World of Patient Safety: 23^rd Annual Samuel Jason Mister Lecture.” Archives of Surgery 144(5) (2009): 394-398.

“Studies suggest that, on average, individuals in the U.S. have only a 50-50 chance of receiving evidence-based, recommended care…”^† †Arora, Neeraj K. “Importance of Patient-Centered Care in Enhancing Patient Well-Being: A Cancer Survivor’s Perspective.” Quality of Life Research 18 (2009): 1-4.

“It has increasingly become apparent that in the short term we [doctors] could relieve more pain, restore more health, and extend more lives by improving quality and safety than by developing new treatments.  That is, if we consistently did what we know how to do correctly every time, for every patient, we would double the quality of care.”**  **Leape, Lucian L. “New World of Patient Safety: 23^rd Annual Samuel Jason Mixter Lecture.” Archives of Surgery 144(5) (2009): 394-398.

It’s very difficult for doctors to keep up on current recom­mended medical guidelines to help your illness go away or not get worse:

“In the current healthcare system, scientific knowledge about best care is not applied systematically or expeditiously to clinical prac­tice. An average of about 17 years is required for new knowledge generated by randomized controlled trials to be incorporated into practice, and even then application is highly uneven.”^3a 3a. Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21^st Century. Washington, D.C.: National Academy Press, 2001, pp. 1, 13-14, 236, 237, italics added.

“Each year clinical research produces new findings that may con­tri­bute to effec­tive and efficient patient care. Although considera­ble resources are spent on undertaking this research, relatively little atten­tion has been paid to ensuring that its findings are ac­tually implemented in routine clini­cal practice … The slow and haphazard process of trans­lating research findings into clinical practice compro­mises the potential benefits of clini­cal research.”^‡ ‡ Grol, Richard, and Jeremy Grimshaw. “Evidence-Based Implementation of Evi­dence-Based Medicine.” Joint Commission Journal on Quality Improvement 25(10) (1999): 503-513, italics added.

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

“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.”^3a 3a. Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21^st Century. Washington, D.C.: National Academy Press, 2001, pp. 1, 13-14, 236, 237.

“The extreme variability in practice in clinical areas in which there is strong scientific evidence and a high degree of expert consen­sus about best practices indicates that current dissemination ef­forts fail to reach many clinicians and patients, and that there are insufficient tools and incentives to promote rapid adoption of best practices.”^3a 3a. Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21^st Century. Washington, D.C.: National Academy Press, 2001, pp. 1, 13-14, 236, 237.

“The dominant finding in our review is that there are large gaps between the care people should receive and the care they do re­ceive. This is true for preventive, acute, and chronic care, whether one goes for a checkup, a sore throat, or diabetic care. It is true whether one looks at overuse [when a healthcare service is pro­vided although the potential risks outweigh the potential benefits], underuse [when a healthcare service is not provided when the potential benefits outweigh the potential risks], or misuse [when otherwise appropriate care is provided in a manner that leads to or could lead to avoidable complications]. It is true in different types of healthcare facilities and for different types of health insurance. It is true for all age groups, from children to the elderly. And it is true whether one is looking at the whole country or a single city.”^3a 3a. Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21^st Century. Washington, D.C.: National Academy Press, 2001, pp. 1, 13-14, 236, 237.

It is absolutely possible that, with some research on your part, you might be more up-to-date on what you need for your illness than your doctor.  Don't be in that 45% of patients who only get partially-treated.  Help your doctor out, help yourself out, and live a longer, healthier life by getting fully-treated for your illnesses.