Guest post by Tony Via, Senior Product Manager

Over the past few years, we have worked hard to establish a safe and trusted environment for you to find health information easily and connect with each other as you navigate through your individual patient journey. And we know that no journey is the same… With that, we have decided to unify our condition-specific sites under one brand – the one you already know and trust – HealthCentral – in hopes of helping you to navigate more easily between health topics and communities. Our mission remains the same. Our only hope is that these changes will enhance your experiences in finding information, connecting with others and sharing, along the way.

The second change to the sites is with our site navigation. We’ve taken heed to many suggestions we’ve received over the years and created a universal navigation which will be displayed across all HealthCentral’s condition sites. This means that you will now see at the top of each page menus for: “Conditions A-Z,” “Our Communities,” and “Health Tools.”

Last, many of you have already seen this change on most of our sites, but you’ll soon be seeing this across all of the sites. On the left-hand side of most pages, you will now officially see your condition’s Patient Journey (Introduction, Treatment, Living With, etc.). This navigation will vary by condition since it’s very specific to each condition, but this is where you will be able to find all of our information arranged through the eyes of you, our community member.

Take a look here for a visual explanation of what exactly has changed on the site and where you can find your favorite links.

The best part of all this news is that you no longer need multiple display names and passwords to navigate between all of our condition sites – all you have to do is login once with your email address and password and you can interact within all of our communities.

That’s it! We hope you like the new design of our sites and that you find the changes helpful. Please let us know your feedback in the “comments” section to this post. We look forward to hearing from you!

Earlier this year, researchers crunched a lot of numbers to prove that chronic pain is a big problem in America. People often can’t work because of it and they spend lots of healthcare dollars trying to feel better.

The report did say that doctors need to do a better job understanding and treating chronic pain, and it’s always nice to hear that. However, much of the rest of the report was common knowledge for many people in the HealthCentral community.
We also did some research into chronic pain this year. In looking at the results, I knew that we needed to go beyond the basic numbers.  I wanted to create a “report” that gave pain-free people an idea of what it’s like to live with ongoing pain.
Take a look at life with the King of Pain. Scroll down to see more detail about each topic and see if this reflects your experience.In addition to taking away relationships and hobbies, living with chronic pain also takes a real financial toll. Based on the survey results, I estimated the average cost of treating chronic pain as well as what else you could do with this amount of money.

One reason chronic pain takes such a toll is because it requires constant management and decision-making. 94% of respondents take prescription medications and 75% take OTC meds. The charts below show the details of what they take. These two quotes from people who took the survey reveal just as much about living with chronic pain.

“I’ve tried at least 4 of these and now just mostly grin and bear it with 2 Tramadols.”

“None – the meds I use just take off the edge of my pain…OTC wouldn’t begin to help.”

In the last few years, several painkillers have been taken off the market. When we asked people why they changed medications, many said because Darvocet was no longer available. Other comments revealed other challenges of taking pain meds.

“Lyrica was like a miracle drug, but I gained 40 pounds and it was too expensive.”

“I was having cognitive difficulties on Topamax, and lost my job.”

People who have been living with chronic pain for years have a lot of experience in dealing with doctors and making treatment choices. Their comments throughout our survey show that they use their expertise to help other people coping with pain and to stay informed about new treatment options.

Technical details

If you’re interested in how we did this research, read on.
We surveyed subscribers to our chronic pain newsletter in August. 712 people completed the survey. There is a list of the questions at the end of this post.

To calculate the average cost of treating chronic pain in the money graphic, I selected top answers in questions about prescription medications and alternative treatments and estimated the cost for each type of treatment.
Based on our survey, the three most common prescriptions for chronic pain are Cymbalta ($168.98 for 30 capsules), Hydrocodone-Ibuprofen ($33.99 for 30 tablets), and Oxycodone ($19.96 for 30 tablets).  Including the brand-name drug increases the average cost, but this example includes only one prescription medication.  Many people take more than one prescription to treat chronic pain, so the higher average cost is a fair reflection of reality.
Supplements were the most commonly selected alternative treatment for chronic pain. Fish oil, vitamin D, capsaicin, and glucosamine sulfate are commonly taken for chronic pain. I looked up prices for each one on Drugstore.com and averaged the cost of one package.  It is difficult to determine an exact cost because capsaicin comes in patches while the other supplements are in pill or soft gel form.

All prices are from Drugstore.com as of October 2011.
Finally, 64% of respondents said that they had been treating chronic pain for more than seven years. The figures in the graphic reflect the cost for that group of people.

For the Happiness graphic, n=2,815. Respondents selected all answers that applied.

For the Money data, n=2,040. Respondents selected all answers that applied in a question about alternative treatments.
For the Treatment data, n=1,529 and n=2,040 respectively. Respondents selected all answers that applied.
In the Long Fight graphic, n=673 and n=577 respectively.

Survey questions
1.    Have you been diagnosed with a chronic pain condition by a doctor?
2.    Do you have a diagnosis for the specific cause of your chronic pain?
3.    How long have you been treating your chronic pain?
4.    Do you use any of these prescription medications to treat your symptoms? Select all that apply.
5.    Do you use any over-the-counter medications to treat your chronic pain?
6.    Have you tried any of these treatments for chronic pain?
7.    If you have switched from one prescription medication to another, what was the main reason you changed your treatment? Select one.
8.     Has chronic pain affected other areas of your life? Select all that apply.
9.    Do you participate in any of any of these online activities? Select all that apply.
10.    Do you have a cell phone that allows you to use applications and browse the web?
11.    If you access health information from your cell phone, are you more likely to visit websites or use mobile applications?
12.    What aspects of your overall health and well-being do you believe have been influenced by your online activities?
13.    After finding information on a website about your condition, have you taken any of the following action? Select all that apply.
14.    Once you have researched a medication or treatment online, what are you most likely to do next? Select one.
15.    If you participate in online communities with people who have health conditions similar to yours, how important is it that these people have other qualities in common with you, such as age, race, gender or life stage?
16.    When you share personal health information in an online health community, how important is a sense of trust in the web site?
17.    How do you decide whether to trust a site?

Guest post by Jeff Kennedy, Community Manager, HealthCentral & Wellsphere

Hearts. We all have one, but now it’s time to give one. And unlike organ donating (which is awesome, I guess not for the giver, but I digress…) HealthCentral makes giving a heart as simple as point and click.

Have you seen those commercials where a person asks one million questions in a place like a restaurant, but then goes to the doctor’s office and doesn’t ask anything? Watching it, I totally resonate with the situation. It’s silly that we don’t share everything with our doctors- it’s our life after all. However, I have knowingly done the same thing. Sometimes I felt embarrassed, I forgot, or I felt like my doctor wouldn’t take me seriously and actually listen to my concerns.

Even if we don’t want to admit it, we don’t mind turning to the internet for our health concerns. There are whole communities and pages built to cater from the most broad to the narrowest of health concerns. The best thing about that information is that you can use it to fill in all the blanks, or inform your next doctor’s visit all while remaining anonymous. So now that you’ve found information that’s meaningful , what do you do next?

Like most of us, you probably just go on your way with your new found knowledge and there’s nothing wrong with that. But maybe you take a second and remember how anxious, nervous, scared, or confused you were. I feel confident in saying none of us would want to pass those feelings on to someone else. In fact, I’m sure that if we could, we would try to ease those feelings as much as possible for anyone. When something captivates you, or eases worries, giving a heart can show others it made an impact. Read an informative article, on HealthCentral, about an upcoming surgery that put your anxiety and fears to rest? Click the heart button next to it.

The internet is huge, and there are a sea of voices. That is what makes it the single most useful, and destructive tool today. You can search for hours for information, but it’s not always clear what’s the best for someone in your situation. Every time you give a heart on HealthCentral you’re making sure that the person who comes after you has an even greater opportunity to find useful information.  Hearts empower the words and advice of other patients. It allows you become an empowered patient by influencing those who come after you . It’s an act of giving that benefits everyone.

Giving a heart is the simplest act of charity.

Exploring Twitter as much as I have, you begin to see certain patterns emerge in certain groups. Tech people love their conference hash tags, social media “ninjas” relish in their Klout score, and the beautiful women who direct message me are always spam (found that out the hard way). But one trend I was unaware of was the vast number of people asking health questions on Twitter, often having their inquiries come up empty. HealthCentral noticed this trend and immediately realized we not only had the ability but also the resources to help these individuals, no matter how big or small their problem was.  So, we created @Health_Tips. Watch the video to learn what it’s all about:

By Jessica H. Simon and Mark Silverberg

Like many websites, Q&A content is the fastest growing content type at HealthCentral, and has been for years. We get a few hundred questions a week and nearly everyone is answered by our Experts or community members in a timely fashion. While we have articles that cover each of these topics extensively, users turn to Q&A because they are looking for personalized answers that address their needs, on their terms. As a result, Q&A conversations are some of the best examples of how we make a difference in people’s lives and well-being on a daily basis.

“Thank you Lene. The information that is available on this site for panicky, freaked out first time flarers is immeasurable –  feel like I have a life line” (Source: Healthcentral.com)

“Thank you so much for your helpful advice! […] Whenever I did google searches for my situation I just kept getting webpages and message boards that scared me even more. You definitely helped put my mind at ease and lowered my stress at least 50%.” (Source: Healthcentral.com)

So we asked, “Where else are people asking health questions and how can we help more people?” All the usual places come to mind: between friends and family, search engines, at the doctor’s office etc. But, what about social media? After some quick digging using the Twitter API we found a treasure trove of health questions asked on Twitter on a daily basis (Inbox Q cites around 6k per day in April). Many remained unanswered and most we have answers to. So we came up with the idea for @Health_Tips: we find answers to your health questions on Twitter. Here’s how it works:

1)      We search public Tweets for condition-specific, qualified health questions OR users directly @mention us with health questions

2)      We query our content base for answers to these questions, using proprietary technology that identifies the semantic intent of the question and the most related content

3)      Our content producers manually curate the content and personalize an @reply answer

Today, we answer an average of 350 questions per week and have proven successful in helping thousands of people on Twitter since the soft launch of this project in June.  We continue to see unbelievably positive feedback from the Twittersphere:

Health_Tips Sample Tweets:

Furthermore, the people we help are rapidly becoming loyal users to @Health_Tips and Healthcentral.com. On Twitter, our follower base is growing at about 500 people per month, as people we’ve helped check out our daily health tips, which range from condition-specific FAQs to little known facts about bacon or phobias. And, our site traffic from Twitter continues to climb from the nearly 100% tweet CTR on links we send as answers and the amplification we get from influential health information seekers who spread the word for us, like LeAnne Rimes and Kim Coles.

Possibly the most important value we get from this project, is expanding our ability to connect with a new audience of health information seekers and understand their needs. It allows us to understand common questions, popular topics, content they find helpful, templates that appeal to them and what we’re missing. Ultimately through @Health_Tips we are better able serve the health community.

Come check us out at http://Twitter.com/#!/Health_Tips and ask us a question!

Guest post by Allison Tsai.

The month of October marks Domestic Violence Awareness month, a sensitive topic that is too often hushed or silenced on both an individual basis and in the larger social conversation.  The reach of domestic violence is far, and the people affected by it are diverse. This diversity brings a variety of perspectives to the table, from romantic relationships to elder abuse to the effect of domestic violence on people who are disabled or living with a chronic illness. The need to tell a deeper story about domestic violence brought together experts from 10 different HealthCentral sites to join forces for a powerful awareness effort.

We created a section on the site dedicated to the shareposts being posted across the sites on domestic violence, and new posts are going up each week showing different paths of the same issue.  The important of these shareposts, and the passion behind the writing is echoed in how the experts feel about raising awareness for domestic violence from a different angle.

Lene Andersen on Rheumatoid Arthritis discusses the lack of information on chronic illness, disability and domestic abuse:

“There is a silence surrounding the issue of domestic violence. And domestic violence against those who live with chronic illness and disability is wrapped in a silence within a silence. There is very little information about how domestic violence and abuse affects this population. And that means the people who are affected have very few resources for help, making it even harder for them to become safe.

During October’s Domestic Violence Awareness Month, we started a conversation about the issue. Building bridges outside and within, the project included Karen Ager, author of Enemy Within and Community Leaders and Experts from ten HealthCentral sites. We shared our personal stories of abuse and violence, interviewed survivors and offered information and resources. We hope that by breaking the silence, we can begin to create a safety net that will help those who live in an abusive situation. We also hope that this will be the start of a bigger conversation, one that continues to build bridges that will create a safety net and put an end to violence against people with chronic illness and disability.”

Karen Ager, who did a guest post for us on RA, opened up about her personal experience with dealing with rheumatoid arthritis and domestic abuse, and how her illness perpetuated her inability to defend herself and leave her abuser.

“When you are physically unable to defend yourself, the fear associated with the abuser, even if it is just the sound of their name, never ever goes away. My inability to defend myself was perpetuated by my RA. Having a chronic disease can make you feel emotionally vulnerable and mentally fragile. Couple this with physical and emotional dependency on the perpetrator and you have a ‘double handicap.’ Unique vulnerabilities such as having to rely on the abuser for personal care, a possible lack of employment options due to illness and less community resources, make those with chronic illnesses or disabilities in domestic violent situations even more at risk for prolonged abuse. They are also more susceptible to mental conditions such as depression, anxiety and post-traumatic stress. This is why I truly believe this conversation is urgent and different. My hope is that our work will help women(and men) with chronic diseases who are in violent relationships to get out faster than I did, to be aware of their vulnerabilities and to see the link between violence, poor health and wellbeing.”

PJ Hamel on Breast Cancer talks about the shame that was associated with breast cancer prior to national awareness, and how domestic violence awareness needs more light shed on it.

“Thirty years ago, women didn’t speak openly of breast cancer; it was a forbidden subject whose name was only whispered, not spoken aloud. But today, thanks to pioneers like Betty Ford and national organizations like Komen for the Cure, breast cancer has come into the light. The shame of a breast cancer diagnosis has been replaced by the courage and confidence engendered by a new-found national awareness that this disease, like any other, is random – not deserved.

Today, the subject of domestic violence and abuse occupies the space breast cancer owned 30 years ago: hidden. Shameful. Forbidden. “She must have deserved it…” We need to “out” domestic violence, this intensely personal crime against women. We need to shine the light of truth on it: no woman deserves to physically, emotionally, or financially abused. Domestic Violence Awareness Month is a strong first step in focusing attention on this blot on our national character.”

Pam Flores on Osteoporosis talks about the importance of collaboration to bring awareness:

“This collaborative effort, to write about domestic violence across many health sites, allows each writer to reach out to their personal readers and in turn spread awareness and hope about domestic abuse.  Because violence fosters silence, this is our opportunity to give everyone who is silent a voice, and that hopefully is a different way to vocalize the non-vocal recipients of these offensive actions.”

Lisa Emrich on MS talks about the spectrum of people who have witnessed or experienced domestic abuse:

“The face of domestic abuse is as varied as are the communities at HealthCentral.  No matter if you are a woman, man, child, parent, elderly, caregiver, we want you to know that support and resources are available.  Have hope that there is life after abuse.”

Carol Bradley Bursack on Alzheimer’s discusses the often overlooked problems of elder abuse as well as elders abusing their caregivers:

“Elder abuse is often in the news, yet people are often unsure what to do to prevent it. Yes, there are people who intend to be abusers, but most do not. They are stressed caregivers who “lose it.” These people need to know there are steps they can take before they become abusers.

The opposite kind of abuse – elders abusing their caregivers – is more common than most people know. I read about it often from caregivers who just don’t know what to do.  I wrote on these two topics because I hope that education and awareness can lead people to action to prevent, or at least end, both types of abuse.”

John McManamy on Bipolar talks about the added challenge of mental illness and domestic abuse:

“Mental illness poses severe challenges to any relationship. Emotional safety is the number one concern for both partners in the relationship. What can we do?”

Through this collaboration HealthCentral hopes to improve the conversation on domestic violence awareness, to show that this kind of abuse can take place in many different ways, and to let people know they are not alone.  No matter what your situation is, there is help.

Centers for Disease Control and Prevention: National Diabetes Surveillance System. Available online at: http://apps.nccd.cdc.gov/DDTSTRS/default.aspx. Retrieved 9/29/2011.

By: Sara Suchy

Let no American think for a moment that we are the only nation with a weight problem.  While the U.S. continues to grapple with a staggering and seemingly constant rise in obesity among adults and children over the last 30 or so years, Europe faces similar problems keeping their collective weight down, according to John Dalli, the Commissioner for Health and Consumer Policy for the European Commission.   I had the opportunity to speak with Commissioner Dalli while he was in Washington D.C. last week on the European Commission’s efforts to address the spike in obesity across Europe and the rest of the world.

Research cited by the World Health Organization finds that a little over half (50.1) of the adult population in the European Union (EU) is overweight or obese.  Within the EU, the United Kingdom has the highest rate of obesity followed by Ireland and Malta.  Furthermore, only one in five children in EU countries undertake moderate to vigorous exercise regularly.  As a result, obesity has almost doubled in the last 20 years in most EU countries.

Compare Europe’s statistics to the obesity rates in the U.S. over the last 30 years – the Centers for Disease Control and Prevention (CDC) report a similar spike in adult and childhood obesity as well as a 33 percent overall obesity rate for American adults – and you have a world-wide epidemic on your hands.

In response, Commissioner Dalli and the European Commission have focused on developing six key strategies to curb the trend:

• Better informed and educated consumers
• Grow access to healthy foods
• Encourage physical activity
• Develop the evidence-based research to support health-conscious policy making
• Develop monitoring systems
• Heavy focus on stemming obesity in children and low socio-economic groups through education and policy.

Commissioner Dalli explained that Europe and any country that struggles with obesity and aims to cultivate healthy behaviors among its citizens must think of “wellness as a policy.”  Practically, this means implementing and supporting policies that make a healthy lifestyle possible and natural for consumers.

One of these initiatives in Europe is a healthy eating campaign for European school children with the message “Eat It, Drink It, Move It”, which encourages school children to eat fresh fruits and vegetables and engage in regular physical activity.  Other initiatives include providing easy-to-follow nutrition information on food packaging to help guide consumers to healthy nutrition choices and investing in research on childhood nutrition and obesity.

Europe’s food and beverage industry has also become involved in the campaign to curtail obesity.  For example, several soft drink companies have pledged not to advertise their products to children under 12 and eight major food retailers operating in the UK have eliminated hydrogenated vegetable oils (Trans fats) from their menus since 2007.

The heavy focus on childhood obesity prevention and treatment efforts is a calculated one, according to Commissioner Dalli. “Children are more vulnerable and more impressionable [to advertising]” but children can also be taught healthy attitude and habits towards physical activity and nutrition early on that will follow them the rest of the lives.

These initiatives in Europe and similar programs in the United States could not come at a more crucial time.  Research cited by the European Commission finds that 65 percent of the world’s population lives in countries where being overweight and obese kills more people than malnutrition; and according to the CDC, many parents will outlive their children as the rate of chronic and fatal conditions, such as heart disease and type 2 diabetes, climb in American children.

Wellness as a policy – a policy with support and funding behind it – as articulated by Commissioner Dalli, is exactly the kind of attitude policy makers across the globe must adopt to ensure the health.  “If we want our children to develop healthy eating habits, we need education policies that include nutrition in the school curricula…to be healthy; our citizens need to live in healthy conditions.”

Last week I attended my first work conference, the e-Patient Connections, in Philadelphia. HealthCentral was out in full force, both in numbers and sponsorship! To say I was a bit out of my element would be an understatement, I had no idea what to expect at this thing. I assumed the conference was going to be a lot of monotone speeches, awkward conversations, and an uncomfortable hotel bed. I was pleasantly proved wrong.

Monday marked the beginning of our week with the Digital Bill of Rights, put together by HealthCentral, Klick Pharma, and the Digital Health Coalition – moderated by Mark Bard. This was a powerful roundtable filled with e-patients from around the nation. Each person was an advocate for a specific cause and their collective passion made hashing out a patient centered Bill of Rights a fantastic process to watch. From big pharma to “deaf” docs, each patient had certain frustrations that were hindering progress and this panel was given the daunting task to determine what should be done, and who the main stakeholders in healthcare should be. As e-patient Dave said, “It doesn’t have to be a bill of rights, how about a list of non-negotiable demands?”  Graphic notes were taken at the roundtable by ImageThink and the finished boards were able to visually capture the passion and frustration of each participant in such a personal way that other conference attendees felt as if they were present at the discussion . These huge boards of colorful notes were then placed in the main conference ballroom and people were asked to pledge their support to the bill of rights.

The next day, I woke up bright and early, ready to advance from conference rookie to seasoned veteran, though I didn’t quite know the game yet. Those monotone speeches I was worried about? – This notion was blown out of the water by the keynote presenter, Charity Tilleman-Dick (who received a double lung transplant as a result of Idiopathic Pulmonary Hypertension) when she sang a beautiful, hair-raising, soprano aria that, along with her inspiring life story, had the crowd in tears. If Kleenex had a stand during this performance not only would  their tissues would have been sold-out in a second but their stock prices would have shot through the roof.  From here on out the conference became a fun, lively, twitter-fueled event that lived up to its name and connected everybody in the room in one way or another.

A bunch of HealthCentral bloggers were able to participate in different panels and Q&A sessions which was a great way to get them in front of doctors and pharma employees who really cared about what the patients had to say. Together the patients, doctors, and pharma were able to express difficulties and share ideas of how they can enhance their collaboration to create a better experience for all. E-Patients who had attended in the previous years said the respect and interest shown to the patients throughout the conference was a huge leap forward, a great sign of things to come.

That night was the HealthCentral dinner. This worried me. I was supposed to mix and mingle with reporters, pharma, bloggers, account reps, i.e. total strangers?!… I can barely mix and mingle with my family. My thoughts in the hours leading up to the dinner were plagued with worst-case scenarios, visions of awkward silence, and my mother yelling at me about keeping my elbows off the table and to not slurp my spaghetti.. not a pretty site.

But, thanks to a glass of wonderful wine, handpicked by HealthCentral CEO, Chris Schroeder, I let go of all the anxiety and decided to just jump in the waters and see if I floated. Not only did people talk to me (middle school me would have been jealous) they wanted to hear what I had to say (high school me would of thought this was always true). Meeting so many people from different facets of the health world was an amazing experience. I learned a lot about where bloggers and e-patients hoped to progress to in the next few years, and how pharma companies wanted to get there but were limited in certain ways. People wanted to know where I saw certain trends going in a few years, and without Google to answer for me, I had to express my actual opinions… it was refreshing.

The dinner experience was the best part of the conference and I want to give a big shout out to Teri Robert and Barbara Ficarra for sitting next to me and listening to my ramblings all night long. And another shout out to Positano Coast; the salmon was amazing!

Day 3 was the last day of the conference and I was starting to miss the fact that I won’t get any more free food, and – of course – learn more from the awesome presenters (but mainly the free food ). Chris Schroeder kicked things off with a riveting keynote entitled, “The Real Health Care Revolution: Where Are the Pitch Forks and Torches.” It was an enthusiastic speech that demanded, at the least, common sense in Health Care. Feel free to read the transcript here or watch the video here.

I know I left a lot of things out, including all our awesome expert patients like Mark King (who has an awesome video blog about the conference), PJ Hamel, Lisa Emirch, Robert Breining, Eileen Bailey,Teri Robert, Ann Bartlett (her HealthCentral sharepost can be found here) and Tiffany Peterson (whose e-Patient blog post can be found here). They all did a wonderful job with interviews, panels, Q&A, and just about everything else! Another shout out to our video crew Amanda Page and Tina Robles who are creating some Oscar-worthy videos about the bill of rights session, the conference, and patient interviews that can sum up the conference better than I can in a blog post – soon to be available on our YouTube page. Also  a big thanks to my teammates Jess (who had to run out early to get married!) and Lucie (who let me tag around and eat all the free food I could get my hands on). And to HealthCentral, Klick Pharma, and the Digital Health Coalition – another big thank you is needed for sponsoring the conference (especially the java bar!!!!) and the Bill of Rights roundtable!

e-Patient Bill of Rights participants as well as members from HealthCentral, Klick Pharma, and Digital Health Coalition

When they said I’d be traveling to a conference for work, a few things popped into my head almost simultaneously: free food, monotone speeches, and awkward conversations. Luckily (and unfortunately for my waistline), only one of those things was true.

Till Next Year!

Oh and check out the e-Patient pictures on our FB page and more here!

 One of the great communications gurus said something to me that I have thought about my six years in and around the online health space:  “It never ceases to surprise me,” he lamented, “common sense just isn’t that common.”

The common sense of our worlds seem clear to me.  Everyone is a health seeker; everyone wants – and now through technology can have at their fingertips – greater control of their lives; that same technology – offering easy information on our terms we can share and extend to our specific conditions, even anonymously – almost seemed be invented FOR health seekers.

And yet in my journey I have had five stunning surprises.

First, no matter how central health is for all of us, we as humans really, in the end, wish to avoid it.  I should not have been surprised – it was prophesized the day we formed HealthCentral.  I received a call from a friend and top executive at WebMD who said, “fantastic!  Welcome to the space where no one wants to visit your sites!”

Based on the common sense I just mentioned, I thought he was crazy.  What is more important than our taking control of our health, and in dire circumstances getting all of the information we can and find people who have been there in order to commiserate?

Then I came to an understanding of the word “compliance” – a terrible word I’ll return to in a moment – but in affect I was shocked to learn how many people not just with chronic issues or mood disorders, but with terminal illnesses not only take “drug holidays” but stopped their treatment out right.  Low and behold, they often act the same way in visiting health sites!

We all have that voice inside that tells us constantly to watch our health, or to do certain things if we or someone we love are in the midst of the battle – but another voice tells us not to define ourselves by it – it’s not that bad, it’s not me, I’m doing fine, I will just will life as I knew it!

Second, for all the talk of empowerment, it really is shocking how much has been beaten into our DNA that health decisions are made by someone else.

Your company chooses your insurer, assuming they offer any; the insurer pushes you towards a doctor, assuming they take it; a doctor pushes your course of action after a 12 minute consultationt, assuming you’ll do what they say.  I exaggerate but not by much.

I remember meeting with the former Secretary of HHS, Mike Leavitt, who told me how he once tried to price shop, apples to apples, a colonoscopy within a few hundred miles of his home.  First and foremost, it was almost impossible to do so.  But when he got a rough approximation over a few hospitals he found a range from a few hundred dollars to many thousands!

I felt his pain a year ago, when I received a check in the mail from my insurance company for $35.  Now I have no idea what that check was for, and the description – some code – offered little condolence.  My mother raised an honest kid – was this a mistake and should I send it back?  Is it possible they owed me more?  I had no clue.  I cashed it.

These stories underscore that the most common sense way of empowerment is to know what you are getting and what it costs – but this dynamic, beyond a co-pay and out-of-pocket deductables, simply doesn’t exist in health!

This highlights my third surprise:  never in the history of business has there been such a massive industry – and industry whose companies affect every life, not some, EVERY – that has as their competitive advantages mastering obfuscation.  Oh others may give them a run for a money.  Spend an hour trying to fathom the 40 pages of papers in your mortgage refinancing today and you know what I mean.  But health – this is in a league of its own.  And the stakes could not be higher.

Fourth, so many parts of the health care industry – now I’m not talking about individual doctors and nurses etc. as we all have ones we love – but as an industry almost has seemed to forgotten that they are helping real people.  The patient, in fact, is lost!

You see it in the choice of words.  This brings me back to those terrible chestnuts: “compliant” or “adherence” – sometimes I feel like a pet dog!  Read the backs of any pharma magazine ad and you wonder if the regulators who compel it had ever been sick a day in their lives.

I have met with dozens of twitterers in pharmaceutical, insurance, hospital and other health companies and I ask them a very simple question – a kind of rorchach test of whether they have lost the patient:  “would you follow yourself if you didn’t work in this job.”  Not one said “yes.”

I don’t get it – after all, every person in the health system is, has been, or will be a patient!  Why is it so hard to BE the patient we seek?  But there you have it.

So — we are at one level resistant to engage in health; so much of the decision making is in other hands any how; the entire industry seems to be based on compounded obfuscation; and the patient gets lost.  All this leads to my final surprise.

Where are the pitch forks and torches?

Where is the “we are mad as hell and we are not going to take it anymore?”

I used to argue that real health care reform will not happen until we all stand up, not allow the forces of obfuscation to win!

We are EVERYONE.  Don’t we outnumber “them?”

Being in the online health world – seeing in the condition specific communities and shared stories that is the backbone of HealthCentral, spending time over the years getting to know so many of you, I began to realize that my question was both an old way of thinking and counterproductive in any event.

While I ring my hands about the nonsense masked as common sense YOU all are standing up quietly and deliberately and taking action regardless of the obstacles – whether driven by anger or invention – is no matter.  We rage at unconquerable, even unknowable Gods.  To what end? Just do!  This is the credo of entrepreneurship that has driven the technological revolutions we so love – there are ALWAYS more obstacles, more reasons why things can’t be done.  The women of men of impact simply say “fine.  You worry about that.  I am going to act.”

You are running a more quiet revolution in our midst, empowered by technology, affectively end-running powers of obfuscation.

You are patient entrepreneurs!

Many of us were proven wrong that great technology would change health and wellness overnight – at the same time the arc of behavior bends towards whether something makes our lives better, cheaper, faster, more beautiful, move fulfilling, more inspired than it was before.  This is the ultimate common sense of any successful innovation or product.

For all the talk of a great technology around patient health records, mobile tools and apps, fantastic new attempts to help us price compare or at least better understand our reimbursements – some  outstanding businesses, others nifty gadgets, others lead balloons – is really moot.  They and more WILL happen, it is not a matter of whether but when.

The rudder for health in the future is what the people in this room represent:  patient entrepreneurship is built upon true patient empowerment, and the transparency, community and action it commands.

Patient empowerment is a terribly tossed around word, but at its essence it meets the three most important needs we all have in a time of health part and parcel, often as important, as the treatment itself.  These needs are:

I am not alone

I’m not crazy.

I can take actions that work because I have seen, shared, connected with, been rallied by people like me who have done the same.

It is the last one in particular that is revolutionary, and what is real — not hype — real empowerment.  I know I can take control or act in a certain way because someone like me did, and succeed.  Again, not just my condition – but ME!  I see this on the health central sites daily.

A 32 year old woman with breast cancer.

An ADD adolescent who thinks he’s a loser

A depressed husband who doesn’t know how to answer his wife’s constant, “what are you depressed about?”

A 55 year old man asking, “should I put my Dad in a nursing home”

In your blogs, in your support, in your tools, in your sharing experiences lies the first steps of control:  we all learn that others just like us regularly fire a doctor, get a second opinion, come back from a drug holiday, talk to a boss about health needs, learn how to tell their children about what they are going through, try a new course of treatment etc.

Shared stories; shared aggregate data of what works or doesn’t; shared recommendations – all equals better outcomes and greater individual control.  This is what will lead to the adoption – no the demand – for the technological innovations that will change the system and get more control.  That is what will drive broader structural change because anyone who cannot stand up to the light shown on upon them will eventually fall.

THAT is common sense.

For video of the speech, click here.

Last Wednesday, my friend Joe Wheeler and I threw Louisville’s inaugural Quantified Self Meetup, sponsored by HealthCentral and igNew. We had 50% participation from our fledgling group’s total membership, which was an awesome way to kick off the movement in the Derby City. There is definitely an interest for all things quantified and self in Louisville and I’m excited to be a part of it.

This first meeting was more of a round table discussion, as opposed to five minute presentations, and we were very fortunate to have Josh Rosenthal, co-founder of Sprigley and current VP of Product Innovation at Eliza, give us his insights on where data fits into and provides the most value for both the current and future healthcare system in America.

Joe talked about the Posterous he set up to track his food intake with friends in the Louisville area. I was actually an early participant in this experiment, who faded out. But Joe is still going strong. And I presented the aggregate data from Mood 24/7′s last 16 months, to give kind of an open kimono look at adoption and utilization for a tracking service.

We were scheduled for an hour meetup, but went well over and into the night, with a spirited discussion around entrepreneurial opportunities for quantified health data. I had also made a totally awesome presentation on feedback loops, summarizing this Wired Magazine article, (thus the Coors Light), but we weren’t able to get to it, so it will be ready to go for our next meetup.

What Is Quantified Self

Quantified Self Meetups are a regular show and tell for people who are tracking data about their body and conducting their own personal investigations and research into their bodies, minds, and selves. Anything is game — from diet and nutrition, exercise, to personal genetics, to ways to digitize and track information, to how to self-experiment with data and statistics.

More specific topics include:

* diet, nutrition, exercise

* self-experimentation

* using data and statistics to further self-experimentation

* behavior monitoring, tracking, and modification (including studying habit forming and breaking)

* lifelogging, lifecaching, and lifestreaming

* location tracking

* generating, capturing, and working with biometric data

* psychological self-assessments

* medical self-diagnostics and keeping track of one’s own medical data

* personal genetics and genome sequencing

A good source for more information and inspiration is the QS Blog ( http://www.quantifiedself.org)