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Article On Patients' Understanding Of Medical Research


doctorguest
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Thanks for posting this for all to read.

But I gotta say, I all ready knew and believed this stuff.

Also I am VERY LEARY of research because it's all slanted and everybody has an "agenda" so thus the RESULTS are always skewed.

Maybe I am just cynical or skeptical or have been ill too many years (out of the workforce basically since 1990) and was a former health food fanatic since 1980.

So I NEVER believe the masses but I DO believe some certain maverick women docs that think estrogen is NOT A GREAT thing to throw at us long term as we age.

I also do NOT approve of the source of Premarin of which many women are still in the dark about. So research? eh...I take it with a grain of salt because each body is like a snowflake.

Individual. What helps one will NOT HELP and or possibly harm another.

Sorry if I muddied any points this article was trying to make Doctorguest.

;)

But I do my homework and read ALL SIDES and the truth is sometimes in the middle and tough to make our final choices of what to do since really, its just a crapshoot!

Just stating my two pennies.

Soph

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This is great, thank you for posting it.

We are bombarded with so much medical "information" in the media--much of it watered-down or exaggerated.

One problem that leads patients to attempt self-diagnosis and treatment can be the lack of time physicians actually get to spend with a patient talking to them about their condition and addressing common questions. This is so important with complicated and poorly understood conditions like POTS. What did really help me when I was diagnosed was that the specialist (who I still get to see once a year) was able to sit down and patiently and compassionately talk to me about many of my concerns, and he gave me a handout (from Johns Hopkins) for POTS/NCS patients. I felt so much more secure in the treatment he selected -- so therefore followed the protocol--and had a realistic idea of how long it would take to see improvements. Between his excellent care and finding DINET I did not find a need to do a lot of internet research or second guess his decisions.

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Hmmmm, I'm not sure how I feel about this article.

Not everyone is fortunate to have a doctor who goes through that much information with them. And many doctors DO just rely on tests and don't sort through them. Or they hand you a pill and send you on your way.

I don't mean to sound cynical--but if we all had doctors that had the time to talk through all of the issues on our minds, we wouldn't be forced to turn to the internet or support groups like this to figure things out.

We DO have to be our own advocates and I think it empowers us to be able to read medical articles and seek out our own information.

Still, I do agree 100% with the issues that the media distorts studies and doesn't give the full story. This is a huge problem.

But, I also think this author doesn't give patients enough credit. I felt insulted reading the article. I already knew that stuff and I felt like he assumed that his patients--just b/c they are patients--are not educated or smart enough to make good decisions and that we should 'let go' and leave our care in the hands of the doctor and trust them.

I can't imagine where I'd be if I took all the 'great' advice I'd gotten from doctors and didn't do my out legwork these past 9 years.

I have an amazing doctor NOW, but I didn't for the first 6 years. The doctor I have right now I DO trust 100%, but that doesn't mean I don't dialogue and ask questions. I think it's rare to find someone like that though. No, I don't think, I know.

Sorry to seem grumpy...

I have been in the midst of an encounter with a pain specialist who has treated me so horribly (yelling at me, not examining me, handing me drugs, not returning phone calls, refusing to coordinate care with my specialist, etc.) that it's hard for me to feel like he knows what's best for me.

As for research, I learned extensively in college how to read and understand journal articles, statistics, etc. and I felt as if this doctor did not acknowledge that we might have the capacity to sort through what the media is telling us.

I've felt so much from the medical world that because I am disabled I am also dumb. That because I am a young woman I am stupid or faking this.

Emily

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Emily, I am sorry about your bad experience with the medical system. I commend you for doing your own research and being your own advocate. I don't think that the author of the article meant to be insulting to patients - just the opposite - I think she wanted to share with other doctors what she does to educate her patients.

You may be surprised, but many patients don't do their own research when it comes to their conditions, and they do look for information regarding their diagnosis, prognosis and treatment from their physician - as they rightfully should be doing, provided that they have a competent physician whom they trust - otherwise, why go to the doctor to begin with?!

Information on the internet and in the media regarding health-related issues can be a double-edge sword, although I am always a proponent of patients educating themselves about their conditions, regardless of whether the information that they have acquired is accurate or not. I want them to come with questions and information tthat they have read, and I want them to discuss it with me, so that I can confirm that their understanding on the topic is correct or point out when/if their source of information is misleading.

I didn't think that the forum members would get a sudden revelation after reading this article because most people here are very educated about their illness, in fact more so than some physicians are. The article does have good points and good links on how to read and interpret medical research, and I think this is useful information to have.

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emily

Thanks for saying your are cranky...I think I used the word "cynical" but I think you and I are on the same page, or at least in the SAME BOOK about this article.

Doctorguest,

I have been an advocate for myself and growing up with a brother in law surgeon, and a mom that worked in Hospitals, I NEVER had tons of faith in the doctors and have always done my own footwork.

While always compliant for tests, I never HESITATED to asks about medications.

I know today I will NOT take a medication UNLESS it has been on the market at LEAST 5 years in this country (or in others)

So I guess I am the oddball.

I am not combative with doctors by any means but if they get their undies in a bunch when I 'question things' or just shrug their shoulders in a 'who cares' attitude,,methinks the best advice is to get another doctor.

Course I grew up with inside scoop who the good doctors were which helped.

Now with my brother in law gone (died) and my mom long retired, I do not know who the good docs are unless my current endocrinologist ANS docs 'deems' them good.

I trust him that much but also do not take his word as Gospel...nor would he want me to.

(Oh, and I can count the number of times I have been on full course treatment of antibiotics on both hands with plenty of fingers left over at age 50. I think that's a good thing. Most docs will throw antis at us even when something is a "virus" DUH???)

But he spends LOTS of time with me and all his pts and knows I know about a drug USUALLY before he has ever suggested it to me. I brought up DDAVP FIRST to him years ago and and he immediately gave me samples when we looked at the useless tests that did not say WHY I kept urinating so much and he goes by "Clinical symptoms" and not always by "tests" since ABC tests and 123 tests never give the full picture in this GREEK world of Dysautonomia.

:P:)

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Thanks so much for posting this, Doctorguest! I get a lot of questions about medical research, both at DINET and working in reference at a library. This will definitely help me to help my patrons better evaluate the articles they read.

-Michelle

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Doctorguest:

Thank you for taking time to respond to my post. I also never thanked you for responding to the Lyme thread ages ago. You do a very good job taking what we say, even if it is negative, and making good points.

I apologize for my hositlity. In retrospect, I should have 'cooled' down before I posted. And honestly, on any other day, the article might not have hit so many buttons. I'm just literally at my wit's end right now with the pain specialist--the level of emotional stress has been overwhelming. I've been treated so poorly so many times, but this has been one of the worst.

I agree with your points in your second post--and they actually put the article in perspective, which was I think my concern.

You are 100% right that most patients do not do a lot of research and often just trust doctors to know what is best. It is amazing how I watch my friends, some of whom are absolutely brilliant, take NO control of their health and are not educated on issues. They call me for advice! LOL. Especially when it comes to birth control! haha! (I did sex education all through college). My dad is a genius in Sociology yet if you try to teach him how to eat well it's impossible. However, he likes to do the 'trained incompetence' thing too! HA!

Also, there are so many people who are NOT blessed with an education and the opportunity to be their own advocates. And they are at the 'mercy' sometimes of doctors who don't have their best interests in mind.

I think maybe the article hit me extra hard b/c my mom was not symptomatic during menopause, but her PCP told her he would only order a bone density scan if she went on hormones. He basically bribed her. It's sick. And then when the study came out, and she never had wanted to go on hormones to begin with she was very angry. In the end, we have learned that going on hormones isn't ideal--especially if you are not symptomatic. Or take them to get through the worst of the symptoms and then stop.

I didn't realize the article was written towards the audience of other doctors. Sorry. Was tired and didn't catch the context/audience.

Also, I know that many of us here are lucky to be able to make sense of medical information, especially since we do have an illness, that in reality, many doctors have never encountered. My PCP has told me that everything he has learned about this illness is from me. He's amazing, but he doesn't pretend to have answers to things he doesn't know.

I guess what I just wish is that when a doctor sees a patient that they take into account that patient as an individual. If the patient is highly educated and knowledgable--respect that and honor that. If a patient is not educated then, by all means, please don't send them out of the office with a prescription for something they don't know how to use and don't know why they have it. Or, even for someone like my dad who is smart, but not medically smart, give him more guidance! LOL.

I think I've just gotten so weary of being treated like I am stupid, even when I go in with lists or whatever.

It sounds like your patients are lucky and you have what it takes to give patients what they need--time to discuss things and understand them.

I wish I could say that after 9 years I've found this to be the norm rather than the exception. But I have not. I do have a GREAT team now. But, I still find those folks that are so demeaning.

I wish that I could portray to you how passionate I am about healthcare. How passionate I am about health. About how my life was always about becoming part of the healthcare field. Now, I am a patient, and it is teaching me a different and new lesson about health and healthcare.

I am currently watching the PBS series Remaking American Medicine.

I want to say that even though I get angry or frustrated, I'm frustrated wtih the ENTIRE system. I am frustrated on behalf of doctors, nurses and patients. I feel incredibly empathy for doctors and nurses today who are not given time to do what they are trained to do: patient care. Instead they are spending their time on insurance claims and fighting to justify drugs they prescribed. I do believe that we have the potential in this country to do so much and be so much more--we have the best doctors, the best researchers and the best facilities, but they are so broken. And it is hurting all of us. You as a doctor, me as a patient, my parents as caregivers and financial supporters of me, etc. etc.

I wish every doctor had the time (and was supported by who they work for) to give patients what this article describes. But, until then, we are sometimes (often) left to find answers on our own. Or at least try.

And, as you concurred, we should also be our own advocates as much as we are able--whatever that capacity is given our situation.

I've been blogging a lot lately and really writing a lot about my experiences and what they say about healthcare overall...and I just hope we find a better day soon. I live in PA and no doctor even wants to come here b/c malpractice laws are so ridiculous.

Okay, I'm not trying to be political here, but it is really, really hard not to be. I'm soooo passionate about this!

Sometimes I honestly believe that if it wasnt' for people on this forum or the research I did online I would never have found any answers.

Emily

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I had fun on Friday teaching my psychiatrist all about dysautonomia/POTS. She said my next career can be in medical research.

I don't mind if doctors don't know about something as long as they're willing to learn! This doctor helped me get an appointment with the neurologist who runs the autonomic testing lab at the local hospital. And she said if there are medications I'd like to try, she'd be more than happy to work with me. And there are a couple more of her patients she said she might send in for autonomic testing because they have a few too many things in common with me.

I love doctors like that! Too bad many of them aren't!

Thanks for the article, Doctorguest. I'm sure you're one of the good ones.

Amy

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Education is POWER. Unfortunately "power" can be abused or misinterpreted, and depending on the physician, patients need to go armed with as much knowledge as possible to advocate for themselves. This helps the patient decide if they should get another medical opinion, surgical opinion, or decide weather or not the pysician in on the same page as they are.

Unfortunately some physicians may label a patient as nuts, rather then admit they are not educated on a particular medical disorder, chronic illness, or rare disease/syndrome. Maybe it's because of the "statistical studies", and histories of patient panic after they read and misinterpret the results. However, a physician is well educated, and should be able to decipher if a patient is "panicked", nuts, or just someone who is diagnosed with a particular disease/disorder who would like to learn about what they are dealing with.

I think this article and connected links could help a patient from jumping to conclusions that can leed to unnecessary visits to their doctor or ER.

There were times I did go armed with knowledge, and it backfired on me leading the physician to think I manifested everything in my mind. My knowledge was based on educating myself on cervical/cranial instability, congenital cervical spine stenosis, EDS, and other spine issues. I was already diagnosed with these physiological problems, and I needed to see a good neurologist that can recognise the subtle signs of neurological deficits BEFORE the problem becomes big---and NOT REVERSABLE.

As I learned more about EDS, I was able to forge ahead for answers, even though one physician did not think I had it. When I went to see a specialist in genetics/EDS he opened up a book of answers after the "official" diagnosis. I'm still learning how serious this disease can be. Just this past Thursday I went to the orthopedic surgeon that the EDS specialist sent me to. I was able to ask the right questions because I was already informed on so much about EDS, and the effects on the spine it can have. Had I known just a few months ago about how careful EDS folks need to be with body mechanics I would have NOT destroyed the disk on T-8-9.

So along with my other spine issues, I now get to suffer additional pain in my mid back radiating into the abdomin.

The surgeon asked me to point where my pain was on my neck, back, ect. We were looking at MRI films of cervical, thoracic, and lumbar films I had taken about a month ago. As I told him that the pain in my mid thoracic spine actually felt worse then my cervical spine, he pointed to the thoracic MRI and said, "this is why". The area was just black---NO DISK! Or at least the appearance of..........

Over the last six years I have talked with so many patients who have been learning to advocate for themselves. If the physician is open minded and not full of his/her own ego it can be very beneficial. However, some physicians will feel that the patient is either crazy or a hypochondriac who spends their spare time researching certain illnesses thinking they may have it.

My Dad is a well educated man, but he didn't realize the medical system was such a quagmire-----and my mother's health care was incredibly neglectful. We found out she had terminal cancer, and two days later she was gone. He asked the right questions--------------------------however, none of us realized how much we needed to FOLLOW UP on those questions, and DEMAND more answers.

The hospital that was handling her care has ISSUES with COMMUNICATION...........

I think this site, other support sites, and with you Doctorquest---- :P have been very helpful in guiding us in the right direction of self advocating, and advocating for others. Thanks for the article-- :)

Maxine :0)

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