Collaborative medicine

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Collaborative medicine

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Old 05-18-2012, 00:18   #1
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Default Collaborative medicine

Some years ago, on another forum, one of the long-term members posted about how he'd been diagnosed with Stage 4 renal cancer and given less than 6 months to live, but had used the Internet to find out everything he could about it, with the result that he was still alive and effectively cancer-free.

It was this man's story that led me to jump online looking for assistance within a couple of hours of diagnosis, and here is where I found myself. And I got lots of great advice.

An important part of ePatient Dave's success was that he found a surgeon who included him in the decision-making, answering his questions honestly and helping him understand everything about his cancer.

Dave is now a full-time e-patient advocate, speaking at patient groups, meetings on collaborative medicine, and generally promoting the empowerment of patients at all levels. He is currently one of the speakers at a meeting on shared decision making: the patient voice in health care in Maine.

Having read here in many threads of the frustration some members are having in dealing with their GPs, endos etc., I thought that Dave's story and the links on his website might be of both interest and some help to those who need to contact and select suitable medical partners in their journey with diabetes.

I'm pretty sure that if I hadn't had Dave's experience in mind when I needed desperately to find out all I could to manage my diabetes, it would have taken me a lot longer to get to where I am today than it has.

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Last edited by AnnC; 05-18-2012 at 00:23.
Old 05-18-2012, 14:52   #2
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An unforuntate experience which for him at least turned out for the better, which is good. The medical system within the US, and most elsewhere really, isn't geared towards patient care in the sense that you or I would like it to be. It's more by the numbers care for the numbers, notably the bottom line of doctors and insurance companies. We could debate endlessly about how or why this is and what's the best way to fix it, but in the end what it means now is you've got to be your own advocate and ask questions, including whether or not the guy or gal you went to for care, despite their degree, is competent. And even if they are, are they serving you and your interests with their decisions? You're the one who is going to live or die on the results, may as well belly up to the bar and demand the service you want.

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Old 05-18-2012, 17:41   #3
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I believe it is of the utmost importance for one to be as involved as possible with their healthcare. If a doctor is unwilling to work with me and gives me the "do what I say or else" attitude, I just walk out and never return to that particular doctor. I don't need to be treated like a child who has done something bad. I need someone who will give me the information I need, be honest and blunt, and work with me to improve my health. I live in this body; nobody else. I know what I feel and how I feel, so don't be so pretentious to think you know me better than I know myself. I don't need a superior attitude from a doctor. They are nothing but another human who happened to go to school to gain the knowledge they did, but it doesn't make you better than me.

Okay, with that said, I just want to comment about my last appointment with my diabetologist, whom I believe truly cares about my health, but said something that truly disturbed me. As most of you know, I've had great difficulty with number fluctuations due mostly to things beyond my control (not the WOE that I have adopted, but internal happenings with my system due to age and stage of life). Of course I try to understand all of it, but some of it is just a bit over my head or just doesn't make sense to me. So, when the diabetologist muttered under her breath "would you consider gastric bypass?" I immediately said "no". I don't believe that is the answer to all of this! And, gastric bypass has its own set of problems. I am overweight; have been most of my life. However, I don't think that I'm am so overly obese that I would consider such a serious surgery as this without having more than just diabetes! That was a bit disappointing to me. But, I'll let it go for now and just keep up with what I've been doing. As I've stated before, I'm just one of those that is going to have to claw my way to tight control. It doesn't mean that I'm spiking at 400 or something! Not even close to 300 anymore. I do get some numbers in the 200's, but I need to really review what did I do that sent me that high and not repeat that again. Mostly my numbers are below 200, but I'd like to get them to be mostly below 140. Some things just make absolutely no sense when I have a lower number and cannot for the life of my figure out what did I do different, or when a number is higher and can't figure out why.

Thanks for listening. Just my frustration getting to me again!


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Old 05-18-2012, 21:59   #4
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It's also up to us as patients to read as much as we can, ask intelligent questions, challenge (in a respectful way) any statements that indicate the doctors are just parroting the numbers at us, and generally indicate that we consider ourselves partners with rights - in fact, overriding rights - in the partnership.

Prior to D, my last serious interaction with the medical profession was back in 1987/88 when I was (finally!) diagnosed with severe endometriosis and told that I needed a radical hysterectomy. I was given no other option, although I was told that I could choose when, and continue on the hormone treatment as long as I liked. I chose to do it soon, and the results were really good. But in those days, there was little information available to me, the online bibliographic databases all costing hundreds of dollars an hour to access, even though I had that access and the skills to search them. 99.9% of the non-medical population didn't even have that.

Now that we have the resources, we need to assist with implementing the changes to doctors' attitudes by making it clear that we are entitled to have our say.

I just think it's good that meetings such as the one Dave was speaking at are happening, and that there is, in some places at least, recognition that shared decision making can result in better medicine. Let's hope that those doctors with fragile egos can eventually learn from other doctors and their patients.

Since I got D (and I'm a lot older and more assertive now, as well as having networks and free access to the information) I've made it clear to my doctors that I feel entitled to do my own research, and discuss the results of that research with them. They're also seeing the results of this, and so far, are delighted for me. I hope they are passing on some of this to their other patients, which is one reason I've been so up front with them about what I am doing.

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