FDA Social Media: Health Activists Have Their Say

Next week, the Food and Drug Administration (FDA) plans to hold hearings on Health Care Companies’ use of the Internet and social media tools. We at WEGO Health decided to bring the voice of our Health Activist community to this historic event.

The result is a survey of over 160 Health Activists, their opinions, and some interesting insights. Our survey found that Health Activists believe:

• Social media is an important tool for health communication, and Health Care Company participation provides value to the community;


• That regulation of Health Care Companies in social media is challenging, and the FDA should work to tailor regulations to the practical realities of social media


• But Health Care Companies have an obligation to the community to be transparent, to correct misinformation about their products, to report adverse events, and to follow regulations.



Some interesting findings from a very enlightening survey:

• 93.5% of survey respondents said dedicated Health Social Networks, such as DailyStrength.org, are moderately to extremely useful


• 79.4% of Health Activists feel Health Care Companies’ use of social media tools provides important updates on products or services


• 67.7% believe regulation of Health Care Companies’ participation in Internet and social media needs to be tailored to the unique attributes of the Internet and social media


Jack Barrette, Bob Brooks, and Marie Connelly will be presenting during two sessions at the FDA hearings.

Click below to check out their presentation for Thursday, November 12 is below:

WEGO Health FDA Social Media Presentation, Questions 1-3

View more presentations from WEGO Health.



And here's the presentation for Friday, November 13, which deals with reporting adverse events:

WEGO Health FDA Social Media Presentation, Question 5

View more presentations from WEGO Health.

Are you interested in a full review and analysis of the WEGO Health Activist Social Media survey? Let us know by filling out our Health Care and Social Media contact form!

Health Activists Use Social Media To Help Americans Understand President Obama’s Health Care Plan

A few weeks back, we let you know about a poll that we conducted that measured how well the general public understood President Obama's proposed health care plan. As the bill continues to make its way through Congress, we looked back at the data -- particularly the comparison of Health Activists and the general public -- and found Health Activists are considerably more knowledgeable about the President’s proposed health care plan than most Americans.

A few key findings:

• 64.1% of Health Activists correctly stated the plan will limit/cap out-of-pocket medical expenses an individual can incur, versus only 42.3% of the general public


• when asked if the plan would ensure competition among health insurance companies, 63.1% of Health Activists correctly said yes, versus only 41.8% of the general public


• Among Health Activists, 92.2% said that the President’s plan would cover all US citizens, as opposed to only 69.2% of the general public


• 72.8% of Health Activists correctly said the plan would not include those who are in the country illegally, as opposed to just over half (50.7%) of the general public

This shows the importance of Health Activists in researching and translating the complex information withing the health care reform bill. “As all aspects of health care grow more complex, Health Activists are emerging as the new experts,” says Jack Barrette, WEGO Health CEO, “they have combined real-life experience with online research and a mastery of social media to become consumer opinion leaders. President Obama would do well to get to know Health Activists as he works to explain his plan.”

For the full release, be sure to our press page.

Exclusive Event for Health Activists: "When to See a Reproductive Endocrinologist: 7 Key Factors", with Glenn Schattman, MD, Cornell University

Join us on Wednesday, November 4th for an exclusive, Health Activist-only event: "When to See a Reproductive Endocrinologist: 7 Key Factors".

Our speaker, Dr. Glenn Schatmman of Cornell University, is one of the country's leading reproductive endocrinologists.

Health Activist participants will gain:

• Valuable insight to help women online to make informed decisions
• In-depth medical updates - usually reserved for physicians - about the factors that all TTC women should consider
• Exclusive direct access to Dr. Schattman during our live Q&A session

This event is free and made possible by one of WEGO Health's sponsors.

We'll be offering this one-hour webinar at four different times on Wednesday, November 4th: Noon, 4PM, 6PM and 9PM (please note: all times are Eastern Standard Time)

Earn $5 for RESOLVE:

WEGO Health is always looking to improve the quality of our Health Activist events. To help us incorporate your ideas and feedback into later programs, WEGO Health will invite all webinar attendees to participate in a brief follow-up survey.

For every attendee who completes this short survey, WEGO Health will make a $5 donation to RESOLVE: The National Infertility Association. Your time helps us learn where we can improve and helps RESOLVE reach more families coping with infertility.

To receive your invite to this exclusive event, please complete this brief survey: Fertility Webinar Survey.

A member of the WEGO Health team will email you if you qualify for this event.

Please contact us at community@wegohealth.com if you have any questions about attending "When to See a Reproductive Endocrinologist: 7 Key Factors".

Upcoming Insight Groups: Sleep Health Activists

We are holding online focus groups on Thursday, October 22nd for people who are active contributors to online sleep communities.

Focus groups will be held at 12 Noon Eastern Time, 4pm ET, 6pm ET and 9pm ET on Thursday, October 22nd

Please note: These groups will take one hour and are held remotely. Participants can join from anywhere in the country, but will required to be online and on the phone at the same time.

All participants will receive a $25 Amazon.com gift certificate.

We are looking for people who:

1) Have experience with Shift Work Disorder
2) Stay current on news and treatment options for sleep problems.
3) Are active contributors to online health communities.

Not sure if you’re an active contributor? We’re looking for people who participate in online discussion forums, question & answer sites, blogs, Twitter, etc.

If you are interested in joining us on Thursday, October 22nd, the link below will take you to a short survey to see if the group might be appropriate for you:

Sleep Insight Group Survey

Breast Cancer Awareness Month!

In lieu of the 25th annual Breast Cancer Awareness Month (October) I wanted to start a post that's full of links to breast cancer sites and other information and ask the community - what are you doing to celebrate this month? Whether you're a survivor or have a loved one that is - October is a month to honor all you've endured and the huge achievement you've made. And while the media sometimes tends to make Breast Cancer seem pink and cheery - it's not called "battling" cancer for nothing. Let's brainstorm ways to honor those who have survived, those who have passed on, and those who continue to fight breast cancer.

Go to the National Breast Cancer Awareness Month Site

Read the American Cancer Society's Take on NBCAM

Making Strides Against Breast Cancer

Wikipedia's article on National Breast Cancer Awareness Month

Debunk the 7 Breast Cancer Myths

Check out Sarah's blog post "It's Almost Time to Feel your Boobies."

Planning a Breast Cancer Awareness event? Get media attention with these tips.

See what's going on at the Susan G Komen for the Cure Site

Skeptical about the "fighter" terminology? Join Marie's discussion.

Join WEGO Health's Cancer Group

Add your comments to these past WEGO Health posts:

• Breast cancer decline matches HRT decline

• New Research: Habits That May Cut Breast Cancer Risk

• Avoiding Breast Cancer - New Research Suggests Prevention Habits

• Breast Enhancement

• Antiperspirants and Breast Cancer

What are you planning? What are others in your online communities planning? What tips do you have for commemorating this month? What are your favorite stories or links? Join the conversation!

Spotlight: Laurie Edwards

Spotlight: Laurie Edwards
Websites: A Chronic Dose
Twitter: @achronicdose
Blogging since: 2006
Occupation: Writer, consultant and professor
Favorite vacation spot: Cape Cod, MA; Ireland; Napa/San Francisco, CA.

What made you start blogging?
I started blogging as a way to gauge my audience and connect with other young adults living with chronic illness. It was great to hear from people who were so similar to me in so many ways--even if our diagnoses were different, especially the rare disease patients. I also felt like I’d accumulated a lifetime of experience as a patient. So I felt that sharing and exchanging that knowledge with other patients would be mutually beneficial. Now, a few years into it, I’ve gotten to know some amazing patients, physicians, and other healthcare people that I continue to learn from. It’s been a lot of fun!

Read the entire Spotlight Interview on Vanessa's Blog

Confused About the Obama Healthcare Plan? So Are Most Americans

The weekend after President Obama's healthcare address to Congress, WEGO Health partnered with global strategic branding firm Siegel+Gale to survey 1,042 members of the general public, and 102 Health Activists to find out how many people truly understand the plan.

What we learned is that only 36.9% of Americans believe they understand the plan. Most respondents couldn’t identify key aspects of the proposal -- including funding, who would be covered by a public option, and when the plan would go into effect.

Key findings of the study (you can read the full release on our press page) include:

• Only 16.5% of the public believes the plan would not add “one dime” to the federal deficit, and 36.1% believe that the plan will add a “massive amount” to the deficit

• When asked about how the plan would be funded, less than one-third of the respondents cited one of the key funding sources that Obama mentioned – fines to be levied on large companies that don’t offer health insurance to their employees

• Almost 20% of respondents answered that funding would come from a fine levied against wealthy individuals – an answer included in the survey questions that has never even been discussed

This speaks to the confusion in the media, the complexity of the issue, and the emotions such a large plan creates. “Clearly the whole health care issue is fraught with complexity, political in-fighting, and emotion that is not helped by poor media coverage,” says Alan Siegel, Chairman and Founder of Siegel+Gale.

• While Health Activists were significantly more accurate than the average consumer on most points, the majority also reported a low understanding of the President’s plan

This last point fits what we know of the Health Activists here on WEGO Health. “Sophisticated Health Activists are power users of online tools, and each Activist influences thousands of others through social media,” noted Jack Barrette, WEGO Health’s CEO, “91% agreed that healthcare reform is a critical issue in the online world. But Health Activists also confirmed that typical consumers they encountered online had a poor comprehension of the Obama health care plan.”

What’s your take on the situation? Do you find yourself confused about the details of the healthcare plan?

How can online communities like WEGO Health help -- both to educate Health Activists, and to inspire them to share what they’ve learned -- about the specifics of the Obama healthcare plan?