Empowering Patients: Are You Getting the Medical Information You Need?

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A column caught my eye earlier this month which discusses in detail the problems patients are having obtaining adequate information about their own care. In this era of instant internet research, one might expect that patients are, or should be, more informed than ever about their health care choices, medical conditions, and treatment options. There are countless websites on everything from insurance plans to health care providers. Google seems to be everyone’s first stop these days for everything, including learnings about different health issues. So why aren’t patients, as consumers of medical care, better informed?

Incomprehensible Information

close quoteNearly 9 of 10 adults have difficulty following routine medical advice, largely because it’s often incomprehensible to average people.

– Laura Landro, WSJ 7/6/10

While it is true that more information is physically available to patients than ever before, that does not mean that people understand it. There are more than 150 public websites comparing healthcare providers, but they are hard to use and the information provided is simply vague and confusing. The case is similar with non-governmental “report cards” on hospitals and physicians. The data is there, but very few consumers can make heads or tails of it.  Also, there are suggestions for patients to simply “ask their doctors” more questions. However, not all doctors welcome this, and some doctors still find it insulting. And among those who do ask, many patients find their doctor’s incomplete, inadequate, or convoluted instructions impossible to understand.

Unreliable Information

On top of that, there are amorphous websites like Angie’s List, where consumers can go and post reviews of various things, including health care providers. The problem with relying on this type of information is that it is often not verified or reviewed by anyone. So an angry patient can trash a hospital that overall might have a good record. On the other hand, these consumer-rated websites have also suffered from a barrage of tricks by both institutions and their competitors. This includes posting glowing reviews for their own benefit that do not accurately reflect the level of care being offered.

Does Doctor Know Best?

Doctors are also sometimes reluctant to give patients all of the relevant information about treatment options or their prognosis. This is particularly a problem with end of life care. However, it’s not exclusive.

Take for example the ACR’s resistance to requiring that radiologists disclose the failure rate of mammography to patients. It has been known for decades that mammograms will miss 52% of cancers in women who have dense breasts. Yet, how many women know this? Literally, the only women that I’ve met who are aware of this fact are ones who have had their breast cancer diagnosis delayed, or a few who have heard of it on Oprah. I have spoken with women from across the Country who all have same story. They faithfully go for their annual mammograms and are told at each visit that they don’t have cancer. This goes on for years, often over a decade. Then all of a sudden they feel a lump and find out that its cancer that has been there a long time. It’s only then that the doctors announce that mammograms can’t detect cancer in dense breasts.  I plan to cover this important issue in more detail in an upcoming post.

Finally, the problems with patient-doctor communication become magnified when it comes to physician mistakes and medical malpractice. Many doctors explain the adverse affects of a procedure, but few volunteer that human error caused it. In a 2006 Archives of Internal Medicine study, a full 19% of doctors said they would not volunteer any information whatsoever on the cause of the mistake. No wonder it is often so hard for patients to understand why the outcome of their treatment might not have gone as planned with this kind of information withholding.

If you are interested in more information about these issues, I encourage you to read the full column on Hospitals and Health Network website.

What are your thoughts on this modern issue of too much information, but not enough reliable, comprehensible information? Are there ways to get patients and consumers involved in the discussion to help them make more informed decisions about their medical care?

See Our Related Blog Posts:

Brookdale Hospital – A Culture Of Unsafe Medical Practice

Nassau University Medical Center Allows Physician’s Assistant to Hold Himself Out as a Doctor for Years – Fails to Diagnose Patient with Cancer

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