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The Proactive Patient Manifesto 04/20/2012

Posted by thetickthatbitme in Whole Person.
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I don’t know about you, but sometimes going to the doctor makes me feel sicker! Why is that? Maybe it’s because I often feel that I have no control over my patient experience. Over the years, I have developed strategies for being proactive about my medical care that assist my doctors in understanding my needs and concerns AND give me more control and peace of mind. So here is my *proactive patient manifesto* of sorts.

As a proactive patient, I vow to…

Keep organized medical records. At most doctors’ offices, you can request copies of all your records, including office visit notes, procedure/surgery notes, labs, and imaging. When you get labs, always request that the lab mail a copy of the results to you (in addition to forwarding them to your doctor). When you get imaging, you can often get your own copy on CD. I keep all of my records in a three-ring binder and use tabs to sort them into categories like infectious disease labs, general labs, gastroenterology, urology, neurology, ophthalmology, etc. I also typed up a one-page medical history summary that lists my past surgeries, medications, and diagnosed conditions, which I keep at the front of the binder. I bring this binder to every doctor visit so that 1) if my doctor needs to copy my records, he/she can do so easily; 2) doctors and their staff know that I mean business and I pay attention; and 3) I can hold my doctors accountable for explaining my current condition in the context of my medical history. For example, I may have lab work ordered by one doctor that is related to a condition for which I am seeing a different specialist.

Communicate as openly and directly with my doctor as I possibly can. This means honestly disclosing symptoms and describing concerns. This means that when my doctor says something I don’t understand, I must ask him/her to repeat it. This means keeping each specialist informed of what’s going on with all my other specialists (the medical history summary really helps with this).

Come to the doctor prepared with a (written) list of questions and concerns. This is essential to me because 99% of the doctors I’ve been to always try to rush me out of the appointment after the first 5 to 10 minutes. Have you ever noticed how when doctors ask us, Do you have any questions? our instinct is always to say no? A discourse analysis professor I had in grad school had studied this phenomenon in doctor visits and found that the use of the word “any” deterred patients from asking questions! He suggested that doctors instead ask, Do you have some questions? because this seemed to elicit a more positive response from patients. My doctors have always used any, but it’s much easier for me to respond, “Yes, I have some questions,” if I have a list of them right in front of me.

Report incidents of mistreatment by my doctor or his or her staff. If your doctor is part of a large practice or a hospital group, there is usually a Patient Experience or Risk Management department or person whom you can contact to report inappropriate treatment. I recommend writing down a detailed account of what happened as soon as you can. Often, these experiences can be so distressing that we forget the order or the particulars of what happened, and that can compromise our credibility when we go to report the incident. When you speak with Patient Experience, try to communicate what outcome you are hoping for, whether it’s waiving the fee for your appointment or a simple apology. If you are mistreated in a doctor’s office, I don’t recommend making a scene or threatening to sue. Doctors take being sued very seriously, and if you sue one doctor in the town (or county, or state) you live in, you may have difficulty finding another doctor to treat you.

Stay informed about research related to my health conditions. This means reading articles, asking doctors to recommend written resources, participating in patient support groups, and—of course—writing this blog.

Am I missing anything? What strategies do you have for staying proactive?

Why I’m starting this blog 04/17/2012

Posted by thetickthatbitme in meta-blog.
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1. When I first started having problems, I thought I was alone. I even thought, some of the time, that the problems were just in my head. I thought my overwhelming fatigue was just from me working too hard. When I took time off, I thought the fatigue was just laziness. I thought the pain was just from the back surgery I’d had, even though I was supposed to be fully recovered within 6 months and my surgeon said my images looked good. If I hadn’t had the help of my family, especially my father, who I’m lucky is a physician specializing in infectious disease, I would have gone undiagnosed for who knows how long. So here’s reason number one: awareness.

2. Knowledge is power. Most people don’t understand until they get really sick how difficult doctors, hospitals, and insurance companies can be–most of the time, dealing with any of the three just makes me feel sicker! I want to share with you what I’ve learned during my many patient experiences, in the hopes that that information will help you advocate for yourself.

3. There’s a lot of misinformation out there–and by out there, I mean not only on the Internet but also in books and some doctors’ offices. I am not a physician, but I am a smart cookie; I read voraciously, ask a lot of questions, and take good notes. I’m an educator with a research background, and I understand more about statistics and research methodology than the average bear. I also have access to a variety of medical journals and other resources that the average patient does not. I am not the sort of person who’ll let a question go unanswered if I can help it.

4. When I started getting treated for Borrelia hermsii, my doctor invited me to join a support group for other patients. I don’t think I’d ever joined a support group for anything prior to this, so I wasn’t quite sure what to expect. A lot of doctors don’t really endorse what I call the touchy-feely aspect of patient care. They underestimate the power of the patient’s emotional state. Lucky for me, my doctor isn’t like that. He is professional and runs a clean clinic, as every doctor should, but it is also a place filled with laughter and music. When I met the other hermsii patients, who were in various phases of their treatment, it was suddenly as if I’d broken through a wall. When it comes to most of my other health problems, I don’t have any friends or colleagues who can relate–most people have a hard time believing I’ve gone through what I have at my age. At the hermsii group, though, they all connected with me instantly. Everyone had something to contribute. Everyone listened. I was amazed at how educated my fellow patients had become about our affliction and at the sophisticated nature of the questions that they posed to the doctor. As a teacher, I marveled at the dynamic of this learning community. As a human being, I marveled at the healing that went on in that hour and a half, without drugs or machines (though I don’t deny the necessity of IV antibiotics in the treatment of hermsii). During that meeting, I wished that every patient with a tick-borne infection could be in that room with us to ask questions, to listen, to find proper treatment, and to heal. This blog is my effort to expand that room to include all patients who need answers and who want to share their stories.

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