Friday, October 15, 2010

What's wrong? 8,000 visitors, and only 1,500 took action

Thank you to those who shared about and joined many of us in participating in the Virtual March on Washington during September's Pain Awareness Month. Your voices were heard. You're making a difference.
The American Pain Foundation tells us that this September was the best yet for pain awareness. A recent press release stated,

"The Virtual March received more than 8,000 visitors and over 1,500 people took action by joining the march, sending letters to their legislators and submitting comments to the FDA regarding Risk Evaluation and Mitigation Strategies (REMS). Seventy-three collaborating organizations endorsed the march and utilized their resources to help spread the word and raise awareness. Thank you for helping to alert our legislators to this critical healthcare crisis and request their help for change."

Thank you indeed!

But let's take just a moment to look at those numbers. 8,000 visitors, and only 1,500 took the time (from several seconds to a few minutes) to DO something about improving pain policy, even when the APF provided them with links and a pre-written form that only needed their name and a click on the send button.

The Butterfly Effect

The Butterfly Effect says that, when a butterfly flaps its wings in a field in here, he may cause a hurricane somewhere across the world. (Now, hold that thought...)

So, why the numbers disparity?

I participated in a group not too long ago, in which a Health Activist stated frustration with some of her community members. I was a little shocked when she used the dreaded words "whine" and "whiners". I thought her perhaps a little callous, until she told us that for all those hundreds of people complaining, a dismal handful chose to actually do something about their situation by becoming active in creating awareness in Washington DC for their condition or even with their local legislators during a recent legislative awareness campaign.

What does action really mean?

Alicia Stales has been talking quite a bit about the pinkification of breast cancer. People assume that if they buy something pink they are helping find a cure for the disease, when in fact the results are not being seen. It allows people to be passive. They thought about it. They spent a couple bucks and now get to wear something everyone recognizes that says they care, but what did they really do? If we buy something pink we tend to feel like we've done our part, and that's enough.

I think we can do better.

Make our whines matter!

There are plenty of ways to make your voice heard where it matters. Contacting your legislators used to be difficult before the internet. Now it takes only a couple key punches and the deed is done. The APF says:

"It is the job of your legislators to represent the interests of their constituents. It is your job to make those interests known! The first step to getting involved in policy or legislative advocacy is to
identify your representatives. Who are your national and state
representatives? Go to and enter your zip code to find these answers."

Sites like the American Pain Foundation have special places to go to learn how to advocate, regardless if chronic pain is your health passion. As a matter of fact, they even provide you with a kit that makes it easy for anyone to step up to the plate. If that wasn't enough, try this link for helpful tips what to say and do when you contact your legislator.

If you happen to be a chronic pain patient, consider letting your voice be heard in the 10,000 voices campaign. Tell your story here.

But, the easiest thing of all, is getting involved when you are contacted by an organization near and dear to your Health Activist's heart. Take 60 seconds to click on the links they provide and send that email to your congressman/woman. Then, share the link with others in your communities. You may not think that what you've done is important, but it is. You may be one by yourself and change someone's mind because they didn't know something you sh owed them. You may be part of 8000 people who send 8000 emails, and the sheer number of us all causes a change.

You may be the butterfly...
Comment by Teri Robert on October 16, 2010 at 1:11pm
Great post, Ellen!

I'll openly admit that I may be the activist you mentioned. I'm always glad to help people, but we all have to help ourselves too. In one case where the Alliance for Headache Disorders Advocacy had an action alert, I emailed over 25,000 people - literally - and asked them to take just 10 minutes or less to follow a link and send an email to Congress. Fewer than 1,000 did it. If we can't count on each other to work to make things better, who can we count on?

Comment by Ellen S on October 16, 2010 at 9:12pm

Thanks so much for the reply of helpful statistics. While its true that some may choose to contact their congressmen/women without the use of that link, I think that number is probably minutely small when contrasted with that 25,000 number. It is my great hope that perhaps by letting patients actually get a feel for just how few really are participating (not that 1000 is a small number, it's just small in comparison) maybe we can see a change over the next few months or years. I'll add just a touch more to what you said - after all, if those of us who are patients don't even want to take out that 2 minutes time to help ourselves, why should anyone else?
Comment by Teri Robert on October 16, 2010 at 10:58pm
Thanks, Ellen. We are very much on the same page.
Comment by Spurtler on October 19, 2010 at 6:23pm
Whining is Very Good

I think there can be whining and positive result. The treatment of complex diseases covers a multitude of linked mini systems and processes from recognising and documenting your symptoms through to daily maintenance and management of a diagnosed or undiagnosed condition. There are many steps between these two poles.

As people whine they intrinsically define problems, or more accurately, the scope of problems. Most corporate marketers welcome the knowledge of their customers' perceived scope of problems. It permits them to create solutions which can be marketed.

But lets not beat ourselves up too much. Not all posts are whines; many are solutions, advice, tips, tools and checklists.

I suggest that we create a new group, perhaps called "Patient POV" the purpose of which is to provide a forum for documenting things that are working and things that are not working from a patient perspective. There are already a huge number of posts that would qualify as relevant to this Patient Point of View Group. If we could add the discipline of not mentioning the names of Doctors who have not been able to help it might be a very useful contribution for commercial enterprises to monitor and aid the definition of problems that require solutions.

Review of the whines could permit the allocation of each whine to the mini processes mentioned above to provide relevance and clarity.
Comment by Teri Robert on October 19, 2010 at 6:39pm
I tend to look at "whining" this way... When we talk to someone or post and express our frustrations, fears, etc., then get proactive and work to do something about it, that's venting. Venting without proactively trying to do something about the issues or problems is "whining." To me, there's a big difference, and that difference lies in whether we're going to look for ways to help ourselves or sit back and wait for someone else to do it. Does that make sense?
Comment by Amy K on October 19, 2010 at 7:11pm
Awesome post Ellen. Not only are you addressing the issue but really giving others easy ways to be active and move beyond our idleness.

Thank you for the ease and grace you bring to health activism!
Comment by Spurtler on October 20, 2010 at 11:36am
TeriRobert: I'm quite a stickler for language because it makes one think more deeply about issue fundamentals by trying to find the words that most represent the situation. However, in this case, I don't give a fig for differences between "whining" and "venting". The words that I have a keen interest in are "individuals" and "groups". There is a potential power in this WEGO group which I do not think is being realised. It has frustrated me continuously since I joined about three months ago. This group, acting as a team, holds a great deal of information, experience and influence, all of which could be used to better effect.

What seems to be missing are the leaders who can marshall the energy of synergystic "individuals" to act as a cohesive "group" - a team.

The team would need goals and objectives and implementation plans. These would give the whining and venting structure and form and remove the randomness. They would also give the whiners a good reason to whine, or vent, because it would be withing a process that is to ensure the betterment of the group.

I've done some publich speaking in the past. With practice it is quite easy to "hold a room". I have not found any examples of social media that "hold a room" other than blogging - and you can't see the eyes of the reader.

The bottom line is that whining/venting is useful in context and useless outwith the appropriate context. WEGO provides the context up to a point. We, the activists, must provide the action component. That is not WEGO's objective. However, it should be our!
Comment by Teri Robert on October 20, 2010 at 11:47am
Sputler, I never said that whining/venting isn't useful. I stand by what I said about there being a difference. Looking at Ellen's original post, I think she understood what I was saying.

I'll take my leave now and leave this to you. I don't really need to be scolded. I do my share to help Migraineurs.
Comment by Marie on October 20, 2010 at 3:49pm
Ellen, thank you so much for sharing this post with the community - I think there's a very powerful message here, and you and Teri have really honed in on something that I think is one of the biggest challenges of any online health community, that question of how we can translate online engagement and conversation into offline action and activism.

I really liked your comment, Ellen, about asking ourselves: if we won't stand up and take action - how can we expect anyone else to? It's what being an empowered patient is all about, right? We all have to advocate for our own health and wellbeing, or for our loved ones - no one else is going to do it for us.

At any rate, I think this is an issue many, many organizations are facing right now. I'd love to hear from Health Activists who have been involved in very successful awareness or advocacy campaigns like this - what do you think caused those initiatives to be so successful?

To Spurtler's point about context and the structures that allow these conversations to take place and be most helpful, I think there may be some other impressive health communities that have really honed in on crowdsourcing this information. I'd strongly encourage folks to check out Patients Like Me, where individuals can track all kinds of data and statistics related to the health topics they're living with - in addition to creating a personal record for yourself, you can view the information submitted by others, and also see the most common symptoms or medications for individuals living with your health condition. CureTogether is another online community with a similar focus, though I think they look more at uncovering new patterns and comorbities between conditions. I've started a discussion in our Forum for anyone who's interested in sharing any additional resources and communities that have this focus.
Comment by Spurtler on October 20, 2010 at 6:21pm
I apologise to TeriRobert for my careless words. They were never meant to be cruel and on rereading I undertand why you are hurt. Please forgive me.
Comment by Teri Robert on October 21, 2010 at 10:54am
Thank you, Spurtler. Of course, I forgive you.
Comment by Ellen S on October 21, 2010 at 7:47pm
I've been away a couple days, and glad to see the conversation continuing :) Thank you so much Anthony and Amy. You guys are the best! Thanks too for apologizing Spurtler. Also, yes Teri, I do think we're definitely both on the same page. Marie asks some really interesting questions too. Will have to go check out her links. Thanks everybody for some great things to think about!

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