Netroots Nation Day 3: Liveblogging the panel “Emerging Trends in Health Care Online”
07/19/08 | Comment (6)
It's day 3 down here in Austin, and I'm liveblogging the panel "Emerging Trends in Health Care Online" with panelists Josh Orton, Ezra Klein, Ash Damle, Julia Eisman, and Health Care for America Now's Melinda Gibson.
The panel is about to start. More updates coming soon...
(update 1:49 pm)
The panelists are introducing themselves. Julie at Families USA begins by talking about new efforts online to organize around health care.
(update 1:52 pm)
Julie: Success organizing around the SCHIP fight. Microsites and video launched on the day Bush vetoed the bill. Lots of outreach to Congress from the grassroots. Proved organizing online around health care is possible, doesn't have to be top down.
Continuing work on health care issues: medicare vote, ted kennedy, working on making health care a grassroots issue.
(update 1:53 pm)
Julie: Will be launching new website, standupforhealthcare.org, to package material in more user-friendly, grassroots oriented way.
(update 1:55 pm)
Melinda Gibson, Health Care for America Now: We are a grassroots campaign, 40 states, a new kind of campaign, both online and offline. Here's our newest viral video.
(update 1:58 pm)
Melinda: We're asking elected officials, business, and citizens which side are you on, the side of health care for all or the side of the insurance company. Elevate this issue to the top of the voter's minds, tie it in with the economy. Sign up for more info on our website (that's here!).
(update 2:02 pm)
Ash Damle, MEDgle: Health is about today and tomorrow. Health is your most important asset. How can you reduce your cost while protecting that asset?
Take control. What are your options? Allow people to access options in ways that are relevant to people. MEDgle is a system to empower you to take control. What doctors are available. What diagnoses?
When you search Google for health info, you get generic results. MEDgle tailors results to you. (pulls up demo of MEDgle)
(update 2:02 pm)
Ash: There are my parameters, I have a history of diabetes, asthma, etc... The system takes into account these factors. Life calculator shows you how to change your lifestyle to get a longer, healthier life.
(update 2:06 pm)
Ezra Klein: I'm here as a journalist, and an opinionated journalist. Think back to 1994, Elizabeth McCoy writes a piece called "No Exit" on the Clinton plan. This analysis defines the debate. No Exit said, if you couldn't work, you couldn't get out. Yet, page one of the bill says nothing in this bill should be construed as restricting choice for Americans.
In '94, the people who had money to fight in the media was the health care industry. Today, there is an alternative communications route to counteract the messages put out by moneyed interests.
(update 2:10 pm)
Ezra: Today, bloggers and small activists actually have influence on the narcissistic press corps. Email the media, they read their own emails. They might not respond, but they will read. In 1994, we lost the messaging war, the enemies defined us. Today, you can do a whole lot to influence the media. We do have power. Journalists listen to feedback, they will change their writing. Just be willing to write to people, point out distortions and lies, be willing to say exactly that. Writers may not acknowledge it on the surface, but you will have an effect. It will really have an impact on whether the next battle is a success or failure.
(update 2:16 pm)
Josh Orton, Netroots Nation: I got into politics through health care organizing on the Internet. Got involved because of my brother, who has a genetic condition, very rare. Not diagnosed until he was 3. My parents went through a lot of testing to figure out what was wrong. By chance, my dad saw a commercial during a Cubs game to spread awareness about the condition. My dad said, "Holy shit! I think that's what David has!" And he was diagnosed.
My dad's a telecom professor. Because there is so few cases, in some cities there are concentrations of the condition, so there are experienced doctors. In a lot of places, though, pediatricians have no experience whatsoever, including my home town, Madison, WI. So my dad started the first email listserv at the University of Madison for doctors of patients with this disease for doctors all over the world with experience with this condition. Second list was started for parents with children with this condition. Parents were unsatisfied with lack of research for this condition. Set up a parallel foundation and funded their own research, leading to a test for the gene.
That was my entry into politics.
(update 2:20)
Josh: It's amazing the complexity of health care, so many forms, so much information, etc... Have the online tools caught up to the complexity of health care?
Melinda: We are taking this on as an aspect of our campaign, accessibility of information. Only one plan in the country which allows you to ask questions and access all info online, and that's Medicare. We want to make sure all aspects of information are accessible to all people.
Ash: There are a lot of companies like Google looking to bring people access to health information, but you need a way to understand it. It's key to let people sift through information for what's useful. There are lots of tools coming out now, so we'll see interesting things coming soon.
(update 2:25 pm)
Josh: Are the tools enough to help people? Or will we always be behind?
Ezra: Framing in terms of massive inefficiencies is the wrong way to do it. It is really hard for average people to sift through information. On Amazon, you have ratings where people can find out what does the crowd think of the product.
I went to a doctor recently, and had a mixed experience. The problem is, I don't know if the doctor was doing the right thing or not. Medicine is hard and very personal. The idea that we're going to be able to take full control over all that might be a myth. We will need doctors to help us, we just need good information.
Ash: This is why we created MEDgle. It was hard for a person to type symptoms into Google and get a good result, what type of doctor should I talk to, how do they test for this, etc... MEDgle is a tool to help people get this information. Will they have to go talk with a doctor, yes. But will they have a better experience with the doctor, and understand more, yes.
Audience member: Where does your data come from?
Ash: All data comes from our physicians. Two years of work to connect the dots. Unbiased. From good sources. There are no standards for studies, so it was hard to connect the dots.
Audience member: How to people with early stage dementia get online? It's hard for older people to use.
Julie: We have a very non-transparent system. Something needs to be done to give people receipts. Medicare is the only policy that you can access all this information.
Ash: We hope that friends and family use this system. Can we provide tools to help you or anyone else diagnose things quicker?
(update 2:30 pm)
Josh: Can aggregating data about insurance plans help people choose?
Ezra: Health care is about future costs. You buy today to offset costs tomorrow. But it's a tricky thing to figure out. The problem is on the other side. You can't use most of the data to study health care in America, it's all proprietary. You can only use Medicare payment data. Nobody can access the real data. I'm less worried what I as an individual can get, but I'm worried that the people who design these plans and treatments and portals, they don't know what they're doing because they don't have access to the data.
Melinda: Having purchased insurance for HCAN, we had 6 options and you pick which plan is best. This is what I do for a living. I've read thousands of pages. Still, it took me a week to choose a plan. Some plans had strange names. I can't even begin to tell you the level of base knowledge I had going in, and to ask someone who owns a small business to go through this, is crazy. It's about the way information is delivered, there is nobody to ask a question of, no regulation entity to ask for help.
(update 2:35 pm)
Josh: What happened to my family, they looked to new tools because they hit a dead end by other means. Are companies using the smoke screen of transparency to hide the fact you're hitting a dead end?
Julie: We did a man on the street video series, expecting people to say how outrageous it was that insurance was denying claims for common diseases. People were so apathetic that they don't see hope for change. They don't even seek out solutions to their problems. It's a problem for us, trying to engage people, that's an impediment to our efforts.
Ash: Our idea, better tools and more information will provide transparency to everyone, and benefit people's energy. Once people know their options, that will get them more excited, and force insurers to serve the consumer.
(update 2:40 pm)
Josh: What is the Internet good for? Are the specific victories we can point to?
Julie: Allows people to tell stories about their experiences. People relate to the issue through their experiences.
Melinda: Rapid response. AHIP, a insurance front group, is launching their "grassroots" campaign Tuesday. Using the Internet, HCAN is organizing and hitting back. We'll have protesters on the ground, with a counter event. This was organized quickly online with our partners, and the major tools we used are email lists and websites.
Ezra: As a writer, the ability to build a niche audience. Washington Post asked for an op-ed. I had a great idea, but the post found it boring. On the Internet, you're allowed to be boring. You can, on a fairly regular basis, build up a level of coverage not possible before now. There is no scarcity of pages. You can do it on your terms, at your length, at your frequency.
Ash: The Internet is transforming health care, because it provides everyone access to the information. We need more access, more organization, more tools, but people can understand their options, for the cost and ease of doing so, is a vehicle by which we can all change health care and make sure we're heard. This information just wasn't there before.
(update 2:50 pm)
Audience question: Insurance companies are bad.
Melinda: We agree. This time we will win.
Audience question: Single payor
Melinda: We have a statement of principles. That includes single payor. But it could include other options. Choice is important.
Ezra: 80% like their current plans, even though 10% like the industry as a whole. Every time we've tried to take away people's choice, we lose. At some point you have to put winning first. I would like to destroy the insurance company, but this country has never just outlaw a multi-billion dollar industry at once. We want a system that eventually gets us to single payor. You don't get there in one step. You never had. We can't wait for public opinion to change. We need change now.
(update 3:00 pm)
Audience question: Framing suggestion - it's not apathy, it's complexity demoralization.
Audience question: With Children's Defense Fund. What online tools do you suggest to solve the crisis of the uninsured?
Julie: Blogs, social networking, email. Viral effects. Take a multi-pronged approach. Jump into communities that have already been formed. Go where the traffic already is.
Melinda: Let people tell their stories. It's important to hear these people.
Audience question: I work for the AFL, our health care survey was live for 24 hours, we got 7000 stories.
Josh: Thank you everyone for the conversation.
(applause)
