Monday, December 13, 2010

Health Activist/Advocate Propaganda

Enthusiasm without science is propaganda.

I wrote last week about a class I took recently about ethics, called Is Hitler more ethical than you? The class itself was about how animal ethics apply to those involved in agriculture. I have applied what I learned to my Health Activism for a couple of posts I hope will inspire some conversation among us.

Our instructor said something that at once I both agreed and disagreed with: She said "I hate activists. Activists push their beliefs on others based on their feelings, not on science."

My first thought was, "but I'm a Health Activist and I use science. I don't push anything I believe on others."

That is very true. I practice every day respecting everyone's right to choose to believe whatever they want. To me, respect means that sometimes we will simply agree to disagree, and that's okay. Here's the kicker for me:

You must know your options before you can make a choice.

With that in mind, I enthusiastically use science and experience to present a point. A choice. An option of something else to consider believing. I try to present both sides of a point as best I am able, and if I am not able to present another side, I try to be mindful that there may be another side and I may not be 100% right. I invite, nay ask for other opinions in almost everything that I write. Most of the time I don't hear from anyone who disagrees with me (which is too bad), but sometimes I do. I enjoy engaging those that disagree with me, not because I am making sport of their opinion or trying to push mine onto them, but because I am genuinely interested and want to learn more.

How do you make sure you are not presenting an issue from only one side? How do you resist spreading propaganda? Do you invite discussion from others who may not agree with your stance on a subject? Are you respectful of their opinions? How do you handle them when they are not respectful of yours?

The truth is, no matter how hard I want to present both sides of an issue, sometimes I know that I am just not able to do it as it should be done. I want to, but I may have had a terrible experience that colored my opinion. I may not be far-sighted enough to see all the variables. When this happens I try to let the reader know that I feel I am biased, and I try to present links to others with differing things to say.

Are you ever a bully - even just a little bit??

Like it or not, the word Activism, or Activist does have negative connotations, and I believe the older you are, the more negative those reactions may be. It took me a long time to warm up to the term, because I believed what the professor believed - Activists were bullies.

Pretty soon, I began to find myself defending the term. After all, I am if nothing else, active. I encourage others to be active participants as well, both in their communities and in their own health care. That is in fact, my goal!

My point is that - as Health Activists - I think it is even more important for us to set the stage. Activists in general have a bad rap, and often they deserve it. They write with incredible passion and feeling, but with too little fact and sometimes no science at all. To make matters worse, many communities discourage including scholarly links in their posts. I have personally been slammed (and even kicked out of a group once) for including links to illustrate a point.

I don't want to be the purveyor of propaganda. The mere word conjurs up visions of 20th century wartime propaganda, much of that by Hitler (which he said he learned from our US propaganda efforts). I want to illustrate points, not try to prove them, but that's tough for me sometimes.

What do you think of the line Enthusiasm without science is propaganda. How does it make you feel? Do you agree? disagree? Why?

Do you find yourself trying to find links to 'prove' a point? How do you most successfully illustrate your points without seeming abrasive?

Comment by Dianne Rees on December 14, 2010 at 12:03am
Great post, Ellen. I do think that enthusiasm for a position that isn't supported by evidence tends to be just noise. It can be well-intentioned noise, but it doesn't do much good. On the other hand, evidence without empathy's pretty useless as well.
I confess I do tend to research when people make statements about health that aren't supported by  credible sources,  because I think others may not have the time or the experience to get a reference quickly (& I've done this for a living) and because I think not having the facts can lead to harm.  Also, if I have a gut feeling about something, I don't want to shoot my mouth off without finding out if the other person has a point. So I actually research to find balance vs to prove someone wrong.
However, I think the issue of a community "correcting" misinformation is a sensitive one, particularly when people who are very well meaning are sharing health solutions that are not really based on any scientific evidence. For example, I'm thinking of some of the exaggerated claims about nutritional supplements that get made sometimes. As much as I might want to, I won't come out and say I'm glad you've had good experiences with a certain regimen but odds are that's just a fluke; these blanket claims you're making aren't really supported by any clinical evidence. After all, the person's experiences are valid for them and they were trying to be helpful. (There's a definite tension between doing information "gardening" in a community and trying to foster participation.)

I suppose one thing a person can say is "here are some resources of interest that point to a different or less cut-dried-outcome than one that's been presented." Then you let people come to their own conclusions. However, I think even that comes off better if you've been active in the community where the post has occurred. People know where you're coming from then and can see that you're not being snarky.

Comment by Kelly Young on December 16, 2010 at 9:44am
Great points for discussion, Ellen!

I'm wondering if you don't get a lot of argument because you tend to present fair posts and give both sides room. That's how I've felt reading blogs you wrote. Also, WEGO is such a lovely polite place. :)

More to the point though, we should carefully consider facts that are presented which challenge our views. True. I wish there were a truth meter to show which are baloney since there are studies that come out contradicting each other all the time...  (Great article on that - here.)

Some "facts" I  "know" to be true from hearing thousands of patients say them, no matter what the study or book says. Other times, I scratch my head & wonder about a missing link. Dianne is right - we all come to our own conclusions. That's why I always post the negative and argumentative comments & engage them on Twitter. If my "side" of a view is right, then it will be able to stand even with the argument & further consideration.

Personally, I hate the word propaganda. I have a lot of enthusiasm as you know. Hopefully, if I keep humility with it, that will keep me out of trouble. ;)
Comment by Amy K on December 18, 2010 at 9:01pm
This raises  a lot of really good points Ellen!

First of all, it would be really hard to sit and listen to someone describe why they hate activists, but if you're experience had been to only have beliefs and information pushed on you, then it would be equally hard to like us.

I believe it's very important to let our passion fuel us and fuel us to further research our positions. Sometimes, it is hard to have access to all sides, but it is important to allow for the possibility of differing opinions, viewpoints and perspectives.

Personally, a lot of what I stand up for is subjective. For example, there is little scientific evidence for me to draw on about the pain of mental health stigma but there is plenty to document the ill effects of trauma or the hardship of living with chronic pain. So much of what I do as an activist is to shine a light on a topic or what life is like living with a certain illness, disease or health challenge. There is plenty of room for different perspectives in my activist efforts and I certainly hope it is not seen as propaganda.

When I am moved to do so or when the situation necessitates it, utilizing data to support a statement or position feels like extra reinforcement to drive a point home, but I don't feel that it is always necessary in order to make my point. I like having the support of science though!

I also agree with Kelly about the tone of your posts Ellen. You are extremely fair and I always admire that about you!
Comment by Ellen S on December 18, 2010 at 10:25pm
I read Kelly's article she linked to with interest.  It says these studies are false, when I think maybe the author meant to say flawed?  There is a difference, yes?

The Free Dictionary lists the definition of science as:
a. The observation, identification, description, experimental investigation, and theoretical explanation of phenomena.
b. Such activities restricted to a class of natural phenomena.
c. Such activities applied to an object of inquiry or study.
2. Methodological activity, discipline, or study: I've got packing a suitcase down to a science.
3. An activity that appears to require study and method: the science of purchasing.
4. Knowledge, especially that gained through experience.

The toughest part about human research is that we are not lab rats/mice who have virtually identical DNA, fed identical diets, living in the identical situation - everything controlled and everything known.  I have long suspected what the article eludes to: you can find research to back up nearly every stance one would choose to take!  Perhaps it is a bit like our court system - far from perfect, but the best around... for now?

Do you think that make most research essentially propaganda (for lack of a better term) as well??

So, where does that leave Health Activists who want to present something with as much fact as possible? with as much research to back it up as possible?

I think this is where the human experience is useful and why patients come to Health Activists to hear about their experiences.  I can say with 100% certainty that I have certain side-effects with a medication.  I don't need some research paper to tell me that it's a side effect because I have experienced it.  The trouble comes when I try to tell my doctor or another patient "hey, this is my experience".  I have nothing to back it up.  It's just me - a lowly patient - giving my perspective which admittedly, could be filled with flaws, bias, and even outright mistakes.  But it is personal 'science' (see above definition).  I think this is why, at least for me, I try to reserve judgment until I have experienced something for myself.  I think patients see this and this is why they like listening to patients opinions on treatments etc.  Experience from a patient with nothing to gain speaks much louder than a research paper written by someone with something on the line.

I think what the professor was getting at, was that we can be very passionate about something, but that doesn't make it the truth.  Kelly, for all your enthusiasm (which is part of what makes you such a fabulous HA) you DO employ science if you use the definition above, because you are utilizing research as well as observation of patient experience.  To me, this is better science than either alone could possibly be.  I think most scientists and doctors do realize this as well.  This is why the FDA often changes medication labeling after it has been released to the public.

Dianne, I love your statement about empathy SO much!  Oh, if we could just put that on a few million billboards!

Amy, I have seen what kind of experiences you've been able to share with people.  This is why Health Activists are so important to patients!  But, just as I mentioned to Kelly, if you utilize the definition above, you are giving these patients personal science as well, because these are your observations based on your experiences.  You use these observations to help others make decisions for themselves.  The best thing about so many HA's I know, is that they tend to give up their experiences as fact, yet leave the reader to decide for themselves if there is more to the subject... and the best part is the conversation that happens as a result!  I really wish physicians could see what patients are talking about...

Comment by Kelly Young on December 30, 2010 at 3:17pm
wow, Ellen. Yes, some flawed and some false, hard to judge motives or know how much of which. Good points. But the point is a lot we "know" turns out to be wrong.

Well, they (doctors) can if they will read the blogs. Slowly I think some are coming along. I wonder what an organization (like WEGO Health) could do to promote that. I know there are other sites that seem to discourage the scientific value of patient expression, so it would be very valuable.
Comment by Dianne Rees on December 30, 2010 at 6:40pm
I've heard some docs say they're reluctant to participate in patient communities because they might be perceived as "barging in." Maybe an open invitation on #hcsm would help connect both patient and physician communities. What do others think?

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