Evidence Based — Having Second Thoughts!

So this morning I taped my radio show for airing this Sunday. During each show, I provide a sharp patient tip — a tool or piece of information anyone can use to help them better navigate the dysfunctional system we call American healthcare.

This week’s tip is about making judgements about treatment options based on scientific evidence — you know — where real experiments on real people have proven one thing works — or doesn’t. Specifically I was addressing recent reports that zinc and echinacea supplements don’t really help relieve a cold. I took the stand that if you understand what the real scientific evidence says, then you won’t waste your money on those supplements, or many other remedies, that don’t really work.

But — I’m having second thoughts now. What I realize is that none of these studies (as near as I can tell) ever account for the very real ability for someone’s head to practically over rule their physiology. For example — one recent study says that chondroitin and glucosamene are ineffective in relieving pain for arthritis sufferers. Oh really? Then how do we account for all those people who say it really helps them? Who is judging their opinions? Do we think they really DO have pain, they just don’t realize it?

Secondly — it occurs to me that “evidence-based” never seems to account for individual differences. It reminds me of when I was a first-grade teacher. We would be told that a certain method of teaching (for reading and math in particular) was THE method — when, in fact — now we know that different people (children) learn in different ways.

So who’s to say that individual bodies won’t react to treatments differently? Actually — we DO know that! So — how do we now marry those two concepts that account for individuality?

For now, I’m going to think about it this way. Perhaps “evidence based” represents the majority. But anecdotal evidence by individuals who find relief must still be accounted for — and respected.

Evidence Based — Having Second Thoughts!

So this morning I taped my radio show for airing this Sunday. During each show, I provide a sharp patient tip — a tool or piece of information anyone can use to help them better navigate the dysfunctional system we call American healthcare.

This week’s tip is about making judgements about treatment options based on scientific evidence — you know — where real experiments on real people have proven one thing works — or doesn’t. Specifically I was addressing recent reports that zinc and echinacea supplements don’t really help relieve a cold. I took the stand that if you understand what the real scientific evidence says, then you won’t waste your money on those supplements, or many other remedies, that don’t really work.

But — I’m having second thoughts now. What I realize is that none of these studies (as near as I can tell) ever account for the very real ability for someone’s head to practically over rule their physiology. For example — one recent study says that chondroitin and glucosamene are ineffective in relieving pain for arthritis sufferers. Oh really? Then how do we account for all those people who say it really helps them? Who is judging their opinions? Do we think they really DO have pain, they just don’t realize it?

Secondly — it occurs to me that “evidence-based” never seems to account for individual differences. It reminds me of when I was a first-grade teacher. We would be told that a certain method of teaching (for reading and math in particular) was THE method — when, in fact — now we know that different people (children) learn in different ways.

So who’s to say that individual bodies won’t react to treatments differently? Actually — we DO know that! So — how do we now marry those two concepts that account for individuality?

For now, I’m going to think about it this way. Perhaps “evidence based” represents the majority. But anecdotal evidence by individuals who find relief must still be accounted for — and respected.

More for Patient Advocates

For patient advocates and patient support services (non-medical) — a new listing website is being developed. Sign up to be included when it launches — at no cost:

www.AdvoConnection.com

Feedback is welcome!

Hospital Acquired Infections

My column in the Syracuse Post Standard on Jan 9 told about my mother-in-law’s hospital acquired infection post surgery in December. Thankfully she’s on the mend. She’s one of the lucky ones.

Response to the column has been overwhelming. From stories to photos, one sadder than the next. Scares the bejeezus out of me! A low estimate of deaths is 90,000 Americans per year.

The AARP wrote an excellent expose of the problem, and I’ve decided to do a follow up on the subject, too. My next column will cover some of the feedback I received and information about legislation. (Want to be notified? Link here: http://www.everypatientsadvocate.com/icontact/index.htm)

To write the column, I interviewed Dr. Betsy McCaughey, founder of RID (Reduce Infection Deaths). Find her organization’s website at: www.hospitalinfection.org . Dr. McCaughey, former Lt. Governor of New York State founded the organization when she left state government several years ago. RID is doing a remarkable job of influencing state governments and hospitals to begin to rid hospitals of infections. The same approach has been successful in Denmark, Holland and Finland. So why not here in the US, too?

How sad that such a fundamental, and fairly easily fixable, medical problem has to be legislated to be fixed!!

Failure to Diagnose

A woman contacted me yesterday highly frustrated because she has been trying for seven months to get a diagnosis and so far — nuttin’.

She asked me about it because she had just visited a specialist, and his first question to her had been “why are you here?” Turns out, the referral was made by her Primary Care Physician — but no paperwork had ever been sent by the PCP to the specialist.

It was not the first time that had happened. Other specialists had asked her the same thing. She wanted to know how she could prevent that from happening again. Further, she was being sent for duplicate tests because the specialists didn’t have any records to realize she had already had those same tests.

Is this not a PERFECT example of why we patients need to take responsibility for our own medical situations? How ironic that the inability to get a diagnosis may be the result of bad customer service, and not bad medicine! And what if whatever is wrong with her is beyond a cure now — only because of the lack of record sharing?

I can’t help with a diagnosis — I’m not a medical professional. BUT — I suggested she get in touch with all the doctors she has seen during these past several months and request copies of her medical records, including all test results. She has promised to gather them all together — then she’ll get in touch with me again. Once we have them all, we’ll begin putting together a notebook that goes with her everywhere — a journal of her quest for a diagnosis which she can share with every professional she sees.

Sharp patients trust only themselves to handle these details. We don’t have medical knowledge, but we do have organizational skills. And I have to wonder about sloppy customer service which is, clearly, what she’s been receiving from her PCP.

If it were me? I’d be looking for a new PCP — one who knows how to follow through in the interest of his/her patients. It’s called voting with our feet.