Tuesday, March 30, 2010

Disclosure: Patients, PR, and Participation

Who am I? Who are you?

Choosing to disclose or discuss your health online is a significant decision. When you do decided to connect online, some may prefer to use screen names and pseudonyms when participating in community forums. Or some folks such as myself have used our full name from the very beginning of their blogs existence.

I do not blanketly recommend one approach over the other. It truly depends upon your circumstances and comfort level when discussing personal aspects of your health and day-to-day life. I've known several bloggers who approach this issue either way, and at least one who dumped her pseudonym for her real name after a short period of time.

Patient Advocacy

One thing for which I am glad to have used my real name from the very beginning is that I have been provided opportunities to speak up as a patient advocate. I hope that from everything I learn from others, and myself, helps me to better advocate for the needs of patients everywhere.

I never really considered myself a writer. In fact math and music have always been my thing. But I have discovered that I enjoy connecting with people, finding and presenting information in an easier-to-digest format, and being asked to advise how companies or organizations can better serve the needs of individuals and patients alike.

Without using my real name, I doubt that others would find me as approachable and reliable. I have continued to be open and I do believe that this allows others to feel comfortable contacting me. Whether it is to ask for advice on a specific problem, to connect with someone else who shares your same diagnoses, to make a request, or to simply say thank you, I appreciate the emails I find on regular basis.

Pitches and Junk Mail

However, besides the issue of discussing items of a personal nature, there may be a separate consideration. If you blog, and that blog (or rather the blogger's email) finds itself on a mailing list of blogs or websites related to health (or a participate disease such as multiple sclerosis), you just might find pitches within your email box regarding press releases, new products, specific political issues, upcoming webinars, etc., etc. The list goes on and on.

Since my blog has previously been a finalist in the Best Patient Blog competition hosted by MedGadget each year (although I only received 44 votes), I am on such emailing lists. I've learned to ignore many of these messages but sometimes the PR companies (or product companies) are persistent and send follow-up emails.

Well, this morning a new thing happened. Instead of a predictable follow-up email from a company, I received a phone call.

Yes, that's right - an actual phone call to my HOME!!

Talk about being shocked. Sorry, but EHR (electronic health records) and their use in clinical trials is a bit outside of the scope of Brass and Ivory.

Real Opportunities

Then, I receive a nice email from a PR company who is representing Wendy Booker. Well, actually, they represent Teva based upon previous email contact regarding the 15-year trial data on Copaxone I had received from this same PR company. Wendy is "member of Team Copaxone and Teva Neurosciences is a proud supporter of Wendy's adventures."

If you don't recall, Wendy is the real-life mountain climber who attempted Everest last year but due to weather and health couldn't complete the climb. Wendy has MS. I responded to this email and plan to connect with Wendy on some level in the month to come. She actually has a blog, too....who knew?

I have no problem helping to promote Wendy's activities, especially since they go beyond the representation or interest of a single company and I do happen to find her activities and story inspirational.

On a personal level, I have no connection to Teva since I'm no longer using Copaxone (or any official MS drug at the moment). But I will maintain that my experience with the assistance program leaves much to be desired (and I'm being nice there).

What's next?

I will continue to do what I do - writing online about MS, connecting with patients, helping them to connect with each other, thinking of ways online communities benefit patients, and simply being me.

That's what disclosure means to me. And in the spirit of disclosure and to encourage participation, this blog post was inspired by Sara's prompt for next weeks Patients for a Moment blog carnival. Well, that prompt and a mid-morning phone call which came out of the blue.

1 comment:

  1. I started blogging because I needed an outlet. Bloging to me was like a scream, a release from the tension and stress. I really did not consider these privacy issues you raised here. I like sites where people are caring for each other. I like sites where adult people talk about all kinds of MS topics. I don't particularly like unanswerable questions. I'm not a doctor. I do share how I deal with my issues. I hope to hear how others handle theirs.