Wednesday, April 17, 2013


Patient Advocacy and Social Media.  There are so many aspects of advocacy which was the reason for my ongoing dilemma and the procrastination about that poster.  I wanted to make sure I was clear that I am the Patient AND I am the Advocate.

The (for lack of a better term) moniker, Patient Advocate has been used in so many ways and in so many places, I was having difficulty framing the message I wanted to convey.  I was playing with acronyms.  Ultimately, I settled upon the use of a dash.  Patient-Advocate.

I shared my thoughts about the connections we make, our collaborative efforts and the communities we seek to build.  I wanted to encompass my belief that we belong all along the paradigm.  From bench to bedside.  This was quick and concise.  An anomaly for me..... the wordy one.....

That was my springboard to the lengthy explanation.  I've become quite fond of bullet points.  They work well.  Easy to read and cut right to the core.

Each and every one of these items is an important part of advocacy but the words at the pinnacle?  

Evidence Based Medicine

The only way, and this is my own opinion, but I do believe the only way we can expect to be treated as partners on the same side of the table is if we understand and fully embrace the importance of evidence based medicine and good science. It starts with an idea.

Some ideas, like for example, flying a kite with a key on the line in the midst of a thunderstorm can be a tad on the risky side but we all know the saying, "No pain, no gain."  In research that translates to "High risk, high reward."  In reality, it screams, "Ballsy."  Or, "Stupid."  The bottom line, it proves or disproves what was an idea.    

It doesn't matter how compelling something might seem, until science steps in, it's merely an idea.  In the case of disease, a better term to explain an illness cluster might be "coincidental."  Until someone is able to formulate quality scientific experiments and then execute those experiments, those who rely on coincidences that fly in the face of science may be causing harm, creating hype and advancing an ill-conceived movement.

Where am I going with this?  Two places.

First, I'm on a campaign with headlines.  Whether they are in science digests or the NY Times, if something was done in mice and is YEARS from human trials, which is the case with this headline:


or if something has a nearly identical risk/reward but is headlined:


I have a problem with it.

I'm in a See Something, Say Something mode.  Maybe it was being around all of those science minds for five days.  You can find my little project on Scoop It and because I was so annoyed by a series of articles that hit my medical feed, I had no time to come up with a snappy title.  It's simply called Accuracy of Headlines.

The second place I am going with this good science and evidence based medicine and the responsibility of advocates to share with care is to a story I found on MedPage Today.  Reprinted here, it underscores the power of social media in driving health decisions in some communities and in this case, the decisions are not based upon responsible advocates sharing solid science.

This is an example of an accurate headline and one that is very disturbing to me.  Actions were taken, or more accurately, NOT taken, based upon social media and misinformation.  This reflects poorly on all of us who are trying to be diligent when we share what we learn.  Mostly, this may be harming children.

Note: Emphasis mine, parenthetical remarks aren't essential to the story but I left them in for the hard core science types.

Parents who didn't have their children fully vaccinated relied strongly on the advice of members of their close social networks in making decisions about immunizations, a study showed.
The odds for nonvaccination was 36 (95% CI 6 to 162) among parents who said that one-quarter to one-half of members of their close contacts recommended avoiding vaccinations, according to Emily Brunson, PhD, of Texas State University in San Marcos.
The odds rose further, to 273 (95% CI 37 to 2,028) when half to three-quarters of social network members advised avoidance and to 1,642 (95% CI 131 to 20,663) when 75%-100% of members advised against vaccination, Brunson reported online in Pediatrics.
Because most vaccines are administered when children are small, the important decisions are made by parents.
However, "parents rarely reach conclusions completely on their own. Rather, they rely on others, such as healthcare providers, family members, and friends, for information, direction, and advice," Brunson wrote.
To explore the influence of parents' social networks, defined as "the people they interact with as well as the sources of information they consult," she conducted an online survey in King County in Washington state, an area with high rates of nonvaccination.
Participation was limited to first-time parents born in the U.S. with children who were 18 months or younger.
The survey questioned parents about their perceptions about vaccines and infectious diseases; the people they most closely rely on for advice; and what other sources they use for health information.
The researcher then analyzed the data in three models: the parents' characteristics, their "people networks," and their "source networks," comparing the models with Akaike Information Criterion (AIC) calculations to establish statistical validity, with lower scores reflecting the accuracy of the model.
A total of 196 first-time parents participated, with 126 being considered "conformers," in that they followed and completed the vaccination schedule for the child, and 70 "nonconformers," who delayed or avoided immunizations.
Nonconformers had a significantly less positive view of immunization as rated on a five-point scale (2.8 versus 2.1, P<0 .001="" all="" and="" before="" child="" done="" enrolled="" half="" have="" in="" intended="" o:p="" only="" school.="" the="" to="" vaccinations="">
In the people networks, nonconformers reported more social network connections (mean 6.7 versus 4.8, P=0.05) and included more women (71% versus 65%, P=0.05).
The most striking difference between the conformers' and nonconformers' people networks was that 72% of the nonconformers' network members also were in favor of nonconformity, while only 13% of conformers' network members held that view.
Both conformers and nonconformers considered a spouse or partner and healthcare provider as being among the most important network members, followed by family and friends.
More nonconformers stated that they had a source network (100% versus 80%, P<0 .001="" 3.4="" and="" included="" more="" p="0.01).<o:p" sources="" they="" versus="">
As with the people networks, more of the nonconformers' sources recommended against vaccination (59% versus 20%, P<0 .001="" o:p="">
In the AIC analysis of the model that included parental characteristics, the score was 163.1 and conformity was associated with high household income (odds ratio 0.17, 95% CI 0.03 to 0.81), while having a post-university education was more likely among nonconformers (OR 5.34, 95% CI 1.05 to 27.08).
For the source network model, the AIC was 168.3, and once again, the only significant factor was the number of sources favoring nonconformity, with the OR of 35.75 (95% CI 9.96 to 128.27) when three-quarters or more of sources advised against vaccination.
In the people network model, the AIC was 99.9, with substantially higher percentages of nonconformers' network members expressing unfavorable views of vaccination. This AIC value, lower than for the parent or source models, suggested that this was the strongest influence on parents' immunization decisions, according to Brunson.
The findings also point to a less important role for source networks, such as media, compared with personal contacts, and to a lesser influence for parental demographic factors.
The observation in this study of the importance of social networks "strongly implies that for interventions aimed at promoting vaccine acceptance to be successful, they must take a broad approach, one that is capable of influencing not only parents but the people parents might discuss their vaccination decisions with," Brunson wrote.
A limitation of the study was the possibility of recall bias.
In an accompanying commentary, Douglas Opel, MD, and Edgar Marcuse, MD, of the University of Washington in Seattle, observed that efforts to increase vaccination rates will need to recognize the social forces involved.
"As a society, we respect the privacy of healthcare decisions; however, if we are to sustain adherence to the recommended immunization schedule as a social norm, we need to learn how to empower immunizing parents to become vocal and talk with other parents, including prospective parents, about why they chose to immunize their children," they wrote.
"We must develop and test public health interventions that are based on the cognitive processes actually used by parents in their immunization decision-making while working to increase the role of science in parents' decision-making," observed Opel and Marcuse.


  1. I agree with you about the lack of accuracy in headlines. The news does it all this time. I like what you started with and I think it's a great idea. All of the media takes the same stories and makes catchy irresponsible titles to tease people in to reading them. Yet I still read them looking for information. It's sad about the vaccine. Thanks for all that you are doing. Hugs and XoXoXo - Susan

  2. AnneMarie - THANK YOU for this post! I think that anyone participating in any form of social media in an educational or support capacity has the obligation to look beyond the headlines, and get the real information out - the study looked at an experimental drug in mice, it evaluated treatment patters from the 1970's, there were 20 patients in the study...

    Not to say that a lot of the research is not promising, but in my opinion it is very irresponsible to simply regurgitate headlines and potentially add to the hysteria and misinformation without providing some perspective.

  3. dear annemarie,

    your campaign to advocate for accuracy of headlines on scoopit is such a great idea - media needs to be exposed when it is simply recycling old news, and when the news is not relevant, nor respnsible reporting. and the study about vaccines - wow, what an eye-opener, especially on the public health efforts, refocusing to educate parents who may have a significant impact on other parents who are not inclined to have their children immunized.

    patient-advocate - i really like that! and what a good job you did with connection, collaboration, community along with those bullet points. thank you for all you are doing to bring us to a much higher level of being able to be more discriminating and sending the message that bears repeating again and again - WORDS MATTER.



  4. Hi Anne Marie,
    I agree that journalists need be careful about headlines. What I'd add is that patient advocates need be careful about what scientists call "evidence." There are few studies about which all doctors agree. Sometimes published data turn out to be incorrect. My motto: always question!

  5. I've read this post over a few times now and I find what you're saying extremely interesting. To be honest, I was completely with you right up until the Evidence Based Medicine paragraph. I really enjoyed your bullets about being a Patient-Advocate! I also agree that headlines often do not accurately represent the research they are meant to introduce (or at least they have the tendency to sensationalize or exaggerate certain elements of research). I've noticed that problem with twitter a lot recently. Your use of scoop it to critique this is a really great idea as well.

    I guess what struck me is the way you use the word science in this post, specifically how you seem to equate "good science" with "evidence based medicine". That just gives me a nagging pit in my stomach because it implies that "good science" is absolute and legitimate, which we know is not always the case. Research always has to be taken in context and constantly questioned. Just because a certain scientific methodology is used does not make it instantly "good" or even applicable. For me, I view equating "science"/"evidence based medicine" as an objective truth to be quite problematic.

    Sorry for analysing the heck out of your writing.. I do agree with your general argument that as advocates we need to be cognizant of the information we share, since social networks are a very powerful tool in taking up health information.

    1. Thank you ALL for sharing your thoughts and especially, thank you Sarah and Elaine for making me think about the rather generalized used of the word "science."

      I made a broad and general statement about good science. Now, the challenge..... can my chemo-brain relay the logic. (I think I finally understand a HIGH SCHOOL geometry teacher explaining how math does translate into life...... ).

      This is noteworthy and I do hope I convey my point...

      ALL evidence based medicine by the definition of the words MUST be based in good, solid science. Proper experiments, no bias, etc etc etc...

      The reverse of that statement is absolutely NOT true. Just because something is scientifically excellent does not mean it will translate down to evidence based medicine. There are plenty of people doing "good science" who are total quacks. (I'm sure the guy with the apricot pits has plenty of great science to back up his agenda!)

      It's not an objective truth...... it's up to us to apply logic, to probe, to ask good questions and especially to realize medicine is constantly evolving and as we move to more targeted medicine, we must be savvy "consumers." (I prefer that word to "personalized" but I don't think my brain can get into that right now!!! Likewise, I'm not a fan of the use of the word consumer when referring to patients but again.... no brain power to elucidate the reasons!)

      I hope that makes sense and thank you for for taking the time to comment. I never want to convey anything that might be construed as misinformation.

      A special note to Elaine..... I read the publications and then ask the doctors how they feel this will translate to clinical application. Something recently was being splashed all over the place and although it looked great, I do recall sending a tweet to ask the docs to weigh in with their thoughts. And then, of course, the ATLAS trial is one that will be up for debate forEVER..... Everything is definitely not for everyone. Very important to point out that all decisions about medical treatment should be made between an informed patient and their medical team.

      Again... sincere and grateful thanks for taking the time to point all of this out.



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