bluesky63, I enjoyed reading your post. Very different perspectives. Gave me a lot to think about.
Willowford, I am curious how you envision the groups you label "patients" and "doctors." Do you have some distinct qualities you have ascribed to each of them to be able to put them in separate groups?
Actually, by patients, I personally mean the general public who is not involved in active scientific research on a particular topic - those without formal, active, ongoing training in the topic. They don't have to have MS. They don't in fact have to have any particular chronic disease. Everyone is a patient when you think about it.
The qualities that I ascribe to "doctors" (I really mean docs-scientists-clinicians who have formal training in science) are what are learned throughout their medical/science training... which takes between 5-12 years! Of course, all that information cannot be imparted on "patients" (aka general public) in a few newspaper articles or sessions. Which is where docs (scientists/researchers) report their findings and mean one thing, and some in the general public interpret it as something entirely different.
Instead of two groups, I see overlapping circles. Many "patients" have a professional background in science, research, statistics, medicine, etc. that equals or exceeds many "doctors."
If you are referring to individuals educated in other professions who use the Internet to inform themselves, I respectfully disagree that their knowledge and expertise exceeds a person who has spent (1) 12 years training in something every single day, and (2) continues to spend his/her life - every single day for how long ever they have been "working" - focusing on that particular topic.
It is impossible for say, a lawyer who has MS, has a family to take care of, and works full-time as an attorney, to (1) find the time to devote to studying and practicing medicine that clinicians/scientists devote (unless they have superpowers!), and (2) get the training and exposure to research methods, study design, statistical analysis, interpretation...etc. that scientists received throughout their training with other scientists who critiqued and critiqued until finally the lesson was learned. The general public don't have access to that constant evaluation, feedback and critisism on a daily basis. DOING something over and over first-hand, is nowhere near reading about it.
First, I don't exclude physicians from the "general public or patient" groups - how could I when majority of physicians are themselves patients! (some have MS, others may have diabetes, the rest will still be going for the yearly physicals as patients, right?) So physicians are not excluded as patients.
And of course, many "patients" do not have such a background. But even without adequate information, "patients" have the ultimate responsibility for making their own choices and living with the consequences, and they deserve to have the most appropriate support in making that decision.
Again, unless they are devoting their lives to a specific area, they cannot be experts (not enough time to be an expert in everything!). If your interventional radiologist develops say some heart disease, he will NOT be treating himself! That would be absurd... he would go to the EXPERT (cardiologist) for the best treatment. Doctor's themselves don't consider themselves experts in everything.
So the logic that "patients" or general public with some brief, distant training in science who haven't thought about it all since then are suddenly experts is exaggerated. Without formal training, one may still have a ton of knowledge and know the current literature, but there will be some necessary skills missing.
I would suggest that the most effective way to accomplish this depends on several factors: creating decent research in the first place, the accuracy of the research, disseminating the research results, evaluating the facilities, disseminating information about the facilities, evaluating the interventions and follow-up, and disseminating that information -- you get the picture.
All this has been happening in scientific circles for years... the dissemination part may be an issue for the general public because yes, we spread the info, but how is it interpreted? Does the interpretation represent the actual message of the study? Or is it exaggerated or minimized?
But to me personally, with all that bundle of info, the absolutely most critical piece, if you are genuinely trying to help an individual at the point of making a life-changing decision, is this question: How do individuals make their health care decisions?
That is what you really are trying to find out. Is that why you're here, behind the scenes, as you said?
Excellent point. Maybe that is one of the top questions. I guess the issue is the decision making process and tools used have changed drastically, and I'm not convinced that they have necessarily changed for the better.
I personally find it extremely difficult to gather meaningful evidence on which to make any health care decision -- with my own specific background, I do not trust ANY data, period.
I am cynical, and I believe ANYTHING can be designed and manipulated for any reason, positive or negative. So I do my own personal investigating, and I use a multitude of sources, and ultimately, after family and medical input, make a decision. It's a slow process.
I have seen this cynicism personally alot from patients, especially those with MS, as well as just family and friends.
I do wonder though, is this cynicism selective? I have noticed that those of my family and friends who are cynical about all research, whenever a finding comes out that they ALREADY believe in from before, they suddenly agree with THAT study... the logic is lost on me... evaluating the merit of a study by whether you agree with the findings? We may as well make up data and publish whatever everyone already believes in!
Similarly in CCSVI research, the very same people that are discrediting all researchers, express that all doctors are "liars...etc.", and scientists are just trying to mislead the public... those very same people hang on to anything Dr. Zamboni and his team say like the gospel! To my knowledge, Dr. Zamboni is a researcher/scientist, and a doctor! The very things these individuals should not be (according to their logic) trusting!
Willowford, I applaud your earnest intent, your instinct to dive right in, and your use of the available technology to do on-the-spot research for yourself without waiting for secondhand info about "patients," or for some other expert to tell you what "patients" do. You are going directly to the source and finding out, directly, hands-on, what is happening.
This is precisely what is happening everywhere. People go straight to the available sources. And they see what makes sense, what seems ridiculous, what they want to throw away, what they will keep.
My questions/interests are in patients and how they view things... it's just a personal interest though, so nothing on here is going to be "published" anywhere
If we have questions about what patients do, we go to the patients. But if I have a question about what treatment to get for my chronic condition, is going to other patients really the most objective approach?
I guess that's where things have gone in terms of where we get our info... I don't know the implications of this, but I'm sure someone is studying it somewhere.
It's the people who do NOT have access to more information who have a harder time making informed decisions. And many people are not used to evaluating information. They could use a campaign, geared toward various decision-making styles. Everyone would benefit from that! Right now it can be chaos. But I believe it will be OK. It *will* settle down. It's a learning curve.
I'm not convinced that people who do not have access to chat room and google are necessarily having a harder time making informed decisions. This may be true for some people we all know individually, but on the whole (let's face it, we don't know the majority of people without access to Internet), I do wonder what their experience is like.
There is a large population of people with MS who have access to the Internet and are able to find reasonably well-rounded information about most treatment approaches. But a huge part of the MS population relies on their own personal physician and the info put out by various MS societies.
Again, are we certain that these people are unhappy or worse off? We don't know everyone without access and I don't know if anyone has made the effort to do a study on this. But it's an interesting question. I know many patients who have doctors they trust, and leave the decision up to their expertise, not because they do not have access, but because they recognize that they are not the ones with the expertise in the topic (not saying this is the right approach, but that it exists by choice, not out of necessity).
Again, kudos for trying, and use the search to see that there have been lots of interesting discussions here before. So, do you fish?
No fishing. My hobbies are on the computer! (I know, how dull!)