Social Media, Health IT and Gov 2.0

I was lucky enough to be invited to speak at Driving the Adoption of Health IT Through Innovations in Social Media on  Thursday.

The half-day Washington meeting was held in response to two trends:

(1) the $40 billion [give or take] that will be spent over the next 10 years [give or take] to fund the medical system’s adoption of health information technology–electronic medical records, clinical care deliver systems and telemedicine, mostly.

(2) the increased use of social media in the worlds of health care and federal public-health agencies

The hoped-for outcome? To ensure the innovations in social media technology are integrated into all this spending and system reform–to keep the public involved with health care reform, essentially.

My role was to warm up the crowd. I did my best to convince them, essentially, that what they were gathering to do was very good and important. And also really, really hard.

For instance, while the use of social media to elect Barack Obama is always cited as evidence of the power of social media, frankly that may be easy compared to a lot of what people are hoping to use in health care.

Getting millions of people to go to a polling place on one specific day to pull a lever, touch a screen or mark a ballot using social media really isn’t all that complicated.

Using social media to get one obese 68-year-old man who lives alone to test his blood sugar three times a day for the rest of his life? Now that’s a social media challenge.

Anyway, the panels were full of people working on this stuff.

I learned the most from leaders of the federal government’s social media teams in the Health and Human Services sphere. The meeting drew the A-list. Here’s a quick run-down:

Andrew Wilson [@AndrewPWilson], head of Health and Human Services’ Center for New Media.

His main point: Now that some groups are using things like Twitter, blogs and widgets to respond to public health crises, it’s time to spread social media mojo across departments, agencies and the government.

He, like other federal web leaders, is also trying to figure out how to use these same tools to get meaningful input from the public without being overwhelmed by it–and to turn it into something valuable.

• Wilson invited input from the meeting’s audience to hear their ideas for how HHS can use social media in new ways.
• The agency recently signed an agreement with Facebook, allowing agencies to use the platform to do public outreach.

Sanjay Koyani, FDA Director of Web Communications

Koyani leads the FDA’s effort to reach the public with health alerts, including a recent social media campaign to get the word out about the recall of peanut products. The widget alone got 19 million page views and placement on 20,000 sites with very little promotion, he said.

• When the peanut product recall kicked in, he went to launch a Twitter profile–and learned for the first time that that agency already had one.
• The agency is providing webinar briefings for bloggers, to ensure that this group of increasingly influential web communicators is educated about the process, risk, science, etc.

Koyani’s presentation.

Erin Edgerton, M.A., CDC Senior Social Media Strategist

Edgerton leads, among other things, the CDC’s effort to use social media to respond to public health emergencies. She said her team’s role is to “invent ways” to get public health messages out. Check out this gallery showing the tools available for the H1N1 flu outbreak.

• CDC now offers e-cards you can send to loved ones reminding them to. . .wash their hands to avoid spreading the flu.
• The CDC’s main page is closing in on 1 billion [!] annual page views.

Edgerton’s presentation.

David Hale, @lostonroute66, NIH Information Specialist

Hale’s work blew me away. He leads the National Library of Medicine’s effort to do semantic and national language processing of Twitter traffic to sift out the noise and find evidence of emerging public health concerns. They’re also looking for trends in misinformation.

• He’s also leading something called Pillbox, a tool that would identify drugs based only on their physical appearance.

His presentation

Declaration of Health Data Rights: Aux Barricades!

And so it has come to this: A declaration of human rights about . . .health information technology.

A group of thinkers, leaders and potentates in the patient-centric wing of the Health 2.0 movement, gathered under the banner HealthDataRights.org, has hammered out the following declaration:

Declaration of Health Data Rights

In an era when technology is allowing personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. All people:

• Have the right to their own health data.
• Have the right to know the source of each health data element.
• Have the right to take possession of a complete copy of their individual health data, without delay, at minimal or no cost.  If data exist in computable form, they must be made available in that form, without delay, at minimal or no cost.
• Have the right to share their health data with others as they see fit.

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

[Interest declared: I know a lot of these folks from the Health2.0 world, and was approached to endorse the statement and to blog about it at 9:00 p.m. on the 22nd day of June in the year of our lord 2009. I agreed because, well, I agree.]

This is important and timely stuff.

At a moment when vast amounts of federal cash are being spent on Health IT [HIT] in service of health care reform, it’s important to have the interests of patients plainly and publicly declared.

Why?

The most visible and active “stakeholders” in discussions about HIT so far have been–stop me if you’ve heard this one before–commercially self-interested players who may not [or, to be fair, may] have patient rights regarding what happens with the “I” part of HIT top-of-mind.

These HIT stakeholders include big IT vendors, insurance companies, hospital conglomerates, physician groups, trade associations, venture capitalists and, not least, drug and device makers.

They all have the usual “access” to the the HIT policy making process via lobbyists, contacts on the inside, campaign contributions and swank public affairs firms with expensive furniture in their reception areas and lots of friends in the media.

And so yes, it’s essential to ensure patients are represented in the midst of all this–and to declare patients have access to, knowledge about and [some] control over their personal health information.

And, if necessary, to call the People to arms to demand it.

Though I think they use Twitter for that these days.

Health 2.0 Debut: Social Media for IBS

Dr. Douglas Farrago, a family physician in Auburn, Maine, has debuted a new social media tool, one that ingeniously leverages the power of Twitter to serve patients with Irritable Bowel Syndrome. His introduction is timed to the opening of the Health 2.0 Conference in Boston.

The application allows patients to connect with their physicians and other IBS patients to share real-time information, including messages of support and diagnostic photographs.

If something smells funny, it should be noted that Dr. Farrago is the creator of Placebo Journal, the funniest medical journal you’ll ever read, a sort of Mad Magazine-meets-JAMA. The above image is available for all you Health2.0 geeks and gastroenterologists.

Social Media for Doctors, Hospitals and other Live-Savers

If it’s Wednesday, it’s time for another social media panel, this time at the American Medical Association’s 29th annual Medical Communications Conference in Albuquerque, N.M. I’ll be leading a panel featuring Twitter MD and Dr. Gwenn and a third “virual panelist,” an original, high-concept onstage gambit I concocted last night with a combination of jet lag and a few commonly available adult beverages.

We’ll talk about how doctors, hospitals, medical communicators and others can use social media to reach the public, without anybody getting hurt.

We’ll see how that goes.

Lunch speaker is Obama administration Surgeon General speculatee and subsequent withdrawee Dr. Sanjay Gupta of CNN, who is really good as a TV medical guy but who seems way too young to be getting a “Lifetime Achievement Award.” Apparently he got his big break at this conference years ago so this is a kind of triumphant homecoming.

Anyway: Gotta run. I’ll update later.

The Weekest Links: Nuke.com, Google Air, Twitter Surgery

If it’s Friday it’s time to sift through the dustpan of another amazing, amusing and alarming week on the Interwebs. . .

1. Ground Zero

A Google maplett that lets you select a munition and a type of nuclear weapon and see what sort of “thermal damage” it might do to the target area. Frighteningly, the destruction rendered by the blast of “Little Boy” [Hiroshima] seems. . .well, not all that bad relative to today’s weapons. Or an asteroid. [h/t Very Short List]

2. Air Force Live

A public affairs arm of the USAF has a modest news-and-info blog on that operates on. . .Blogger! Say, is this another one of those Google-inside-deals-with-the-government things? If federal offices start using Orkut to “create citizen communities,” we’ll know something really stinks.

. . .and finally, our regular sighting of the Fifth Horseman of the Apocalypse ™:

3. Live-Tweeting Surgery

The captions appearing in the “comments” under this photo, which depicts Henry Ford Health System surgeons describing the action and taking questions, are priceless. Favorite: “At least they’re not searching Wikipedia.” [n.b. While the docs pictured above were scrubbed in, neither was the "primary" surgeon.]

Liveblog Health 2.0: Health-Management Tools for Consumers

What sort of digital tools are available to health consumers to help them manage the healthinfosphere–and [not to put too fine a point on it]–their health?

Kevin Noland, CEO, ADAM

iPhone app: the Adam Health Navigator. Puts personalized health content on iPhone–click a body part on an image of the body, or search for information. Essentially it puts commodity-level health information on the small screen. Cool features, some geomobile-related some leveraging multi-function nature of iPhone: Find nearest ER; prompt to call 911; educational videos for conditions; connect to doctors in your neighborhood.

David Clymer, CEO, MyMedLab

Web-based tool lets you choose a lab test online. A physician approves order instead of a doctor’s visit in real life. You can find a lab in your area. The tools help you choose tests based on gender, age and disease profile. Results interpreted by an MML doctor and put in your PHR. Key detail: Results can be completely confidential.

Linda Avey, co-CEO, 23andMe

A user provides a saliva sample, and can get information about genetic risks. The idea: Add genetic information into the healthcare system at a consumer level. An analysis is sent to a personal dashboard page, which provides a simple analysis of risk. Click on an indicated risk, you can read hyperlinked research reports. The science team reviews research papers based on the “confidence” level of potential clinical application. Key detail: You can also provide ancestry information to add information to your risk profile.

Mari Baker, CEO, Navigenics

Also processes saliva samples and creates a dashboard of potential risks, including approximate mathematical risks compared to the population and total estimated risk. Also it indicates what percentage of your total risk is based on genetics, as opposed to controllable factors. The service also provides information that helps you reduce risks for those conditions for which you [may] have a genetic predisposition. Key detail: Added information provided to help people manage risks responds to the but-what-can-I-do-about-it-if-I-learn-I-have-elevated-personal-risk objection.

Adam Bosworth, CEO, Keas

A preview of a health management service not yet debuted. It links to HealthVault and Google Health personal health records. A lab archive shows you how your data changes over time, with some visualizations of progress vs. targets. Creates a “to-do” list to identify the behaviors you need to change, including food, exercise, lab tests, etc. Also takes into account of what foods you currently eat, your ethnicity, etc. Suggests food preferences with visuals, reporting calories and what the effect will be on your weight over time. Minor feature: Video education and feedback based on progress and needs.

Ray Schoenberg, CEO, American Well

Virtual office visits via online tools–its first market is Hawaii [only place it's currently available]. Carries you from “Talk Now” with an available online physician to your credit card information to authorize a co-pay and “talk” with a physician. He has your information and can decide whether to engage with you. He talks to you on screen and you can do live chat. Information is audited, summarized and sent [if you like] to your primary care physician. Key fact: It’s a 10-minute session. If you are not insured, you can go onto the system with a credit card or ATM and have a virtual visit.

Stan Nowak, CEO, Silverlink

A phone-based reminder/coaching/feedback system. An automated voice, drawing on your personal profile, reminds you that [for instance] your prescriptions need refilling. This presumably happens automatically. The voice offers the idea of switching to the generic alternative, with an offer to contact your physician to see if the change is approved. Observation: For an automated phone program, the voice is very. . .human-ish.

Michael Cho, DestinationRx

A tool for comparison shopping of Rx meds, offering alternatives– but [first] also warning you about potential drug interactions and safety. Once safety and interactions are screened, you get data on therapeutic alternatives and cost savings for drugs you currently take, including generics and drugs on lower co-pay tiers on your healthcare plan. It will also allow you to contact the drugstore and place the order. Additional feature: The platform helps navigate the complexities of choosing a Medicare Part D plan, including the potential savings, comparing premiums vs. out-of-pocket costs.

Erick VonSchweber, CEO, PharmaSurveyor

Premise: It’s not just interactions, but toxicities involved with each drug that can affect patients. This tool reveals a much broader assessment of med risks. By integrating with partners like DestinationRx, this tool provides an additional layer of safety and vetting using powerful math and analytics. Risk is shown for each drug, plus the cumulative risk of an entire multi-drug regimen. By adding personal information about the side-effects the patient is showing, it can link side-effects to the current drugs. Then it can do a diagnosis showing where the risk is coming from, with an option to show potentially safer options that still deliver the needed therapeutic benefits. Observation: Very powerful data-analysis tool that, while a bit cumbersome to use and hard to navigate, appears to raise the bar for drug-regimen-analysis tools. Rx: Usability treatment regimen.

Marlene Beggelmann, CEO, Enhanced Medical Decisions, DoubleCheckMD

This tool reviews a patient’s recent treatments and personal health records, providing an analysis of the treatments and user directives. This information can go back to the doctor for review, potentially driving better treatment decisions. Can also be used proactively as a way to recommend future treatments. Able to continue to monitor treatments over time, providing update of recent information for treating physicians. Observation: Appears to deliver consumer value, but will be interesting to see how doctors welcome these suggestions and reviews of their treatment decisions.

Stefanie Fenton, Director of Market Development, Intuit’s Quicken Health Group

Helps you manage your bills–as Quicken itself does for taxes and business expenses. You can have bills put in Health Expense Tracker [with insurers who cooperate] to see what’s due, status of deductibles, “special circumstances,” etc. Permits you to analyze and pay bills. You can see whether you’ve refilled prescriptions. This all becomes a financially-based personal health record. Thinking aloud: How valuable is this compared to the information and services you get from your insurer? And does it fully replicate the personal health record? Or is this just a layer on top of those services that provide visibility and clarity?

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