Are You a Health Activist?

Last week, I had the chance to attend WEGO Health’s first Health Activist Meet-Up here in Boston. It was my true public excursion in weeks due to infections and related pregnancy issues, and I am so glad I was able to go.

The WEGO folks are infectiously enthusiastic about health care and social media, and from the “pick three hashtags to describe yourself” to the lively chitchat before and after the breakout sessions, the vibe was friendly and dynamic. I had the chance to catch up with friends like Cheryl Alkon of Managing the Sweetness Within and meet several new bloggers and Health Activists, like Karen of Bitter-Sweet.

I was pleased to have the opportunity to lead one of the three sessions, one called “The Road to Activism: How to Turn Your Passion into Activism.” As I prepared for the event, I thought about what it was I was passionate about and what it takes for anyone to turn passion for an idea or a cause into activism.

I used the following steps as initial talking points:

1. Identifying Your Passion
2. Recognizing Your Strengths/Becoming an Expert
3. Finding Your Voice
4. Locating Your Niche/Building Your Community

Luckily, I had a dream group of articulate, interesting people and from those brief talking points, a true conversation emerged. Of the many take-away points we covered, one that stands out to me is the idea that everyone becomes a blogger, author, advocate, etc (in sum, a Health Activist) for different reasons and wants different things from the community in which they join. For example, the newly diagnosed might want validation or commiseration, while “veterans” might be more interested in sharing experiences or offering wisdom from experiences. Successfully turning passion into activism depends partly on knowing what you offer, what you want out of the experience, and connecting with like-minded people.

In my case, I’ve always been passionate about writing and after an entire lifetime of illness and hospitals, I realized maybe I could use that passion to share experiences and lessons learned. My passion is chronic illness in younger adults, because so many of us live with it and face challenges unique to this stage in life. As I joked the night of the event, I am equal-opportunity when it comes to chronic illness—I don’t focus on any one condition or disease, partly because I have several conditions, because I am a rare disease patient, and mainly because I believe the universal challenges of life with illness unite us.

But that’s not what works for everyone, and that’s why I think the whole idea of turning passion into activism is so interesting—there are so many outlets and ways to express ideas and build communities. I think the robust diabetes online community is a great example of how successful a community of people contributing perspectives on life with a particular condition can be.

What’s your reason?

Other compelling questions we discussed that evening were deceptive in their simplicity:

What do we mean by activism? When do you become an activist?

Some of us were of the opinion that it can happen when you don’t even realize that’s what is actually happening. It could be the first time you write a blog post, the first time you get a reader comment that really stays with you, the first time you put yourself out there.

But I’m interested in what you have to say-what do you think when you hear the word “activist?” When does that transformation from merely being passionate to becoming an activist occur?

Thanks again to WEGO Health for a great evening that set the stage for relevant and inspiring conversations. Looking forward to the next meet-up!

Mid-Week Reading: Shared Experiences and Health Social Networking

It’s that time again! The March Pain-Blog Carnival is now posted at How to Cope with Pain, featuring the month’s best posts about living with chronic pain. New bloggers are always welcome to contribute.

Speaking of sharing insights and experience, I’m sure you’ve come across this New York Times Magazine article called “Practicing Patients.” It discusses PatientsLikeMe, a web community which “seeks to go a mile deeper than health-information sites like WebMD or online support groups like Daily Strength. The members of PatientsLikeMe don’t just share their experiences anecdotally; they quantify them, breaking down their symptoms and treatments into hard data. They note what hurts, where and for how long. They list their drugs and dosages and score how well they alleviate their symptoms. All this gets compiled over time, aggregated and crunched into tidy bar graphs and progress curves by the software behind the site. And it’s all open for comparison and analysis. By telling so much, the members of PatientsLikeMe are creating a rich database of disease treatment and patient experience.”

For patients with diseases like Parkinson’s, MS and AIDS, real-time discussion and analysis of treatment methods, dosages, and relatives success can provide invaluable—and hard to find—information.

This has been a big week in the health social networking world—Healia.com, the health search engine I’ve written about before in conjunction with social networking, just announced the launch of Healia Communities. The site is “a free online health community that enables people to get personal support for their health decisions from peers and experienced health professionals … Healia Communities allows people to share their health knowledge, experiences and favorite resources; provide personal support and connect with people sharing the same health concerns; and get answers to their questions from health experts,” according to the press release.

More than 200 health communities exist right now, and a feature that distinguishes the site from other patient disease sites and groups that connect patients with each other is the additional access to health professionals who can also help answer questions.

What dedicated blog carnivals and online communities like the two mentioned above point to is the ever-increasing influence of technology over the patient experience, a vital exchange of experience and practice with the potential to do much to improve how we manage disease. Check them out and see if they are the right fit for your needs.