I am enjoying this exchange.
It speaks to critical areas we've been talking about. I love how conversations spiral around. The neverending dinner party.
The actual, accurate analysis of studies is terribly important.
And yet I am going to go in a different direction here.
I am thinking in bursts. I may not be clear. Sorry. The weather is stormy in my brain this month. I'm tentatively poking a thought or two above the clouds.
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?
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."
(Incidentally, I do not like the word "patient" except for being amused by the inherent word play.)
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.
So how can "patients" have access to the most appropriate guidance? Is that your passion?
How to make sure that "patients" -- the individuals making health care decisions -- have access to accurate information about research, about facilities, about long-term consequences?
Well, I would say that's great.
We are all on the same page. Along with plenty of excellent company.
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.
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?
So how do individuals make their health care decisions anyway?
Lots of people assume that other people make decisions the same way they do. But there are so many styles of making health care decisions! One person wants facts, facts, facts in order to make the most logical decisions. A different person only wants to do what their friends have done so they can all do it together. Another person will do whatever the old trusted doctor says even if everyone else says the doctor is an antique eejit. Another person ALWAYS does the newest scariest thing. Another person doesn't care what doctor or what facility as long as it's the second week in May because that's the only open slot in their busy-busy schedule. ET CETERA.
People are NOT logical, and their decisions are not logical, and they do not make decisions in a vaccuum. And when they are looking to get information, there is no one right way.
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.
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.
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.
It is crucial to remember that while this type of debate happens -- theory, studies, how to disseminate info -- multiple sclerosis can be a devastating disease. People have died while on waiting lists for angioplasty. This adds an urgency and changes the usual decision-making parameters.
I can't even get into it right now it makes me so sad. Perhaps the most striking examples I can think of off the top of my head are the different experiences of Canadians Barb Farrell and Bill Peart. The whole history of CCCSVI treatment is bizarre. My own experience is bizarre. If you had been immersed in this unfolding story of multiple sclerosis and CCSVI, as we are, you might understand.
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.
Most of these official MS physicians and societies refused to acknowledge the huge interest in CCSVI in a timely way or a realistic way. People received info that either exaggerated the risks, was inaccurate, or patronized the MS population. It was a huge missed opportunity to help this group. People heard about CCSVI, tantalizing info trickled down, but rather than hear info from a doctor, people were forced to look elsewhere, some of them a very high EDSS at risk of death or just in fear of disability, and they got their info from inaccurate news articles, hearsay, etc.
It's just too much. You sound so earnest.
Nature's first geen is gold
Her hardest hue to hold
Her early leaf's a flower
But only so an hour
Then leaf subsides to leaf
So Eden sank to grief
So dawn goes down to day
Nothing gold can stay
A little cheerful spring poetry for the occasion.
Again, kudos for trying, and use the search to see that there have been lots of interesting discussions here before. So, do you fish?
I feel like this is way too long and rambling to post but maybe someone will find a useful tidbit. I can't even tell now if this is on track with the discussion!
I mentioned to someone else here, I've been having this thing lately -- kind of like being drunk without the alcohol -- so don't hold me responsible for losing my inner editor.