Brass and Ivory: Life with MS and RA: Who do YOU Trust?
Folks, I've gotten a little side-tracked lately. Sorry. Trust that you will get the next installment of MY story soon. But a different issue of trust is weighing heavily on my mind.
Who do YOU Trust? Who do YOU Believe?
Who influences YOUR Opinions and Behavior?
If you answered, "well, YOU Lisa of course," then I'm flattered. Ah, shucks.
Is it because I have MS? If so, how do you know that I really do have MS? Don't worry, I do. Or maybe MS has me. Who knows.
Linda D. said something very nice to me yesterday. She said, "I enjoy this blog because you are always informative and insightful without harsh opinion one way or the other...a breath of fresh air."
Thanks Linda, I try to provide some sort of useful information, even if it's only for laughs or smirks. Certainly I try to avoid the pungent odor of human excrement around here.
But what if I were working with a hidden agenda?
As an individual with a blog, I naively became part of the Consumer-Generated Media (CGM) generation. Sometimes this is referred to as Social Media, as opposed to Mainstream Media (MSM) like newspapers, magazines, television, or radio (hi Shauna). Basically, I share my experiences and opinions with readers such as you.
Consumer-Generated Media 101: Word-of-Mouth in the Age of the Web-Fortified Consumer - This basic primer on Consumer-Generated Media 101 (CGM) introduces the concepts behind the new reality of Internet-enabled consumers who are creating and sharing their experiences, opinion and content online…where their influence spreads rapidly to others. Learn what CGM is, how it's evolving and why it matters to today's savvy marketers, brand manages, public/corporate relations professionals and others. Coauthors: President/COO Mike Nazzaro and CMO Pete Blackshaw.
What if I were a marketing outlet in disguise?
There are many, many companies out there monitoring and analyzing discussions in the blogosphere, while strategizing ways to take advantage of social media in their marketing efforts. Here is one such company who visited Brass and Ivory recently.
Cymfony, a division of TNS Media Intelligence, is a market influence analytics company that sifts and interprets the millions of voices at the intersection of traditional and social media such as blogs and social networks to gain consumer insight and develop stronger bonds with influencers.
Do you think the companies trust me?
Another public relations company who has visited here several times in the past is Edelman, who seems to be interested in any mention of PhRMA or PPArx. Check out this report on who us 'normal people' tend to trust - 2008 Edelman Trust Barometer.
(The 1.0 Guide to the Blogosphere for Marketers and Company Stakeholders) - Whether you're new to the blogosphere or a blogging veteran, this introductory white paper provides all you need to know about the blogging phenomenon: what it is, why it's hot, and why its influence has grown and deepened so rapidly. Take advantage of the "Get Smart Guide" of blogosphere jargon, and start to get a handle on who's who (and why) in the world of blogging. Co-published with Edelman.
Do I influence your opinion?
So when a public relations company wants to develop a relationship with blogging influencers, a question of ethics and procedure often arises. To address this need, Ogilvy PR discussed developing a Blogger Outreach Code of Ethics last year. Ogilvy handles the promotions of many pharmaceutical products including Betaseron which I discussed in February.
Do you digg my buzz?
If I mentioned a drug still in clinical trials which might improve nerve function for MSers, would you take notice and possibly ask for the drug if/when it came on the market?
Pre-Launch Drug Buzz: How Preliminary Buzz Impacts Post-Launch Discussion Among Drug Products' Target Audiences - Does online buzz by consumers and patients affect the success of a drug after it's approved by federal regulators for the pharmaceutical market place? This white paper examines the impact of online patient support groups and other online consumer forums where patients discuss common concerns, share ideas and treatment options and candidly lay out their own experiences with medical treatments and drug regimens. And indeed, small amounts of pre-approval buzz can have an impact on a drug's post-approval marketplace recognition. Author: Lydia Worthington, Head of Health/Pharma Practice.
And if you've read this far, and if you've received an invitation to 'join' Wellsphere.com, then please PLEASE consider why it is they want to swipe your blogfeed in order to 'build' their MS community. Beware. I know that I'm not the only one to have received such an email last night (hi Merelyme). It's something I'm simply not interested in.
Dear Reader, please know that I value your opinions and I value the trust you place in me. I am not a mouthpiece, nor an expert per se. I am simply a patient such as yourself who is navigating life with a chronic illness or two.
LOL...should I just REPEAT my last comment here?!? I am just now finishing a post somewhat similar to THIS one...more so, about MY intent in blogging, but also kindly letting readers know my blog only features the 'tip' of my personal ice berg (been receiving some private emails lately from the blog that have caused me pause) and, just like any "REAL" relationship, readers will never know many private things about me.
You've said this very well here...and I will COMMENT again what a wonderful breath of fresh air your blog is to read. I personally believe the minute anyone starts making absolutes for another rather than simply SHARING their opinion in an unencompassing way, they become "distrustful". I never leave your blog feeling like you've just demanded/told/insisted I follow YOUR path, so thank you!
Ooooooooh -- how very interesting and subversive!
You've given us a lot to ruminate on and your objective information is very very much appreciated, Lisa!
There's always an agenda. Some are good, some aren't.
Funny you ask these questions now. I just asked some similar ones on my blog and laid out my own agenda. It is this: "If not me,then who?" Who will change the world if we don't? If there is something wrong with that agenda then "Hooey." You are open, honest and passionate. like I said before, you are the person I want to be when I grow up. Keep up the great work!
Wellsphere.com -- Yes, count me among those who received the email. Seems like a pretty good deal -- for Wellsphere, but not so much for us! Thanks for a thought-provoking article.
No I don't trust what I read in blogs when it comes to any treatments. . I find them interesting but they don't influence my decisions. I do my own research, do my own thing.
There are way too many fake testimonials out their for me to bother trying to figure out who's genuine, who's a fake. Maybe some are unintentional dupes who are conned into thinking their opinion is valued by the health care industry. No, the only value to the industry is for them to figure out new ways to push drugs.
I find the blogs where people talk about their day to day experiences with MS far more interesting than the ones where people talk their injections.
That's the beauty of blogging though you can talk about what ever you want.
Lisa, I don't trust anyone until I have KNOWN them well, a very long time. I cetainly appreciate what bloggers have to say, but take it all in, along with other media, my doctors, my family, my brain and jump in when I decide. I would never put my decsions on someone else; but I crave hearing what others think. I trust my own soup, filled with the yummy and nutricious thoughts/advice/experiences of others.
Ah-ha! Your comments here, folks, about the "social media" is so right on. I became acquainted with this tactic for increasing exposure in internet marketing, using social media as a way to raise one's Google placement, etc., etc. All various tactics being assembled, developed, exploited for income generation by internet marketers of many ilks.