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?

Health 2.0 Liveblog: Consumer Information Aggregators

Five companies that are leaders in making consumer data, including personal health records, available.

Web MD: Just did a deal with Wal-Mart, making WebMD personal health records and tools available to employees. Proof that health technology adoption is moving “from the salaried workers to the hourly workers.”

Comment: Includes a PHR for members to use.

HealthVault, Microsoft: Now has developed 90-plus partners making products for the platform. Seeking to make it easier for doctors and patients to share information. HealthVault launch is part of a “long journey” in integrating information for consumers and with healthcare system. Have created an “industry” around making these connections happen. New partnership with Kaiser, integrating its own PHR service with the HV platform. Process to copy Kaiser health record to HealthVault is multi-step and multi-click box/policy agreement process–not a smooth demo. Multiple sign-outs and sign-ins.

Comments: The demo failed–yikes. The conference gives him a “do-over”. . .and that fails too. Dude: Smooth it or lose it.

Aetna: Launch of personal health record across their patient population. Data from docs, labs, patients. integrated. Made it portable, allowing access to PHR via print or online. Aetna members can use HealthVault, with mutual back-and-forth of data between platforms.

Comments: Do patients trust their insurance company with the full details of their health? Another log-in issue! Crowd applauds when he’s able to actually get into the personal health record. Like many such service, “health coaching” is available.

Google: Last 12 months encouraging and humbling. Encourage: Google Health has launched–portable, controllable patient information. Learning has begun, but Google iterates to improve. Humbling: “This is incredibly hard.” They want it to be easy, and they want it to be useful. We’re good with easy. Useful: Still working.

Comments: Has launched program with pharmacy chains, to integrate med use data with personal health records. Data go from pharmacy directly to Google Health in real time. This demo fails too…and exposes a really UGLY, DOS-era pharmacist data input tool.

Yahoo Health: “How much demand there is for health content. Two new partnerships: Waterfront Media [operator of Everyday Health, a big, successful health content company which has gobbled up the scraps of Revolution Health*] will distribute health content; and HealthGrades, provider of physician data information. [Conflict of interest: I am a former employee of Revolution Health.]

Comments: HealthGrades will provide some basic individual doctor information [with an opportunity to dig into deeper content, some of it paid content] and mashup it up with Yahoo Groups, ratings and recommendations, plus Yahoo Answers. Unlike other groups on the stage, Yahoo is not offering a PHR–it’s all about the consumer-centric information.

Health 2.0 Liveblog: Clay Shirky

Author of “Here Comes Everybody,” NYU Interactive technology/culture prof: Health 2.0 keynote address.

“More is Different”: As groups aggregate, they create not just more knowledge, but a different, more valuable kind of knowledge….this affects healthcare innovation in three ways:

Information: Most valuable aspect of the Internet: “people.” Those who think about health information think of individual transactions–but the value is when people share this information. Yahoo Groups, “the first social software,” illustrates tremendous public demand for collaboration with others. “Wherever people trust each other, the information will flow.”

Coordination: Example of how institutions are losing centralized control: Vatican 2, 1970s:, premised on “The People are the Church.” But in the 70s, people couldn’t do anything about it. . .until 2001. Then the abuse scandal broke–and by then, technology enabled “word of mouth at the speed of light.” The church was powerless to control the information–incidents were transparent, individual episodes became aggregated.

Parallel: In healthcare, the standing command-and-control structure sees “healthcare” as the sum total of providers, payers, etc.–the established institutions. But the patients are healthcare too–and they outnumber professionals by 100 to 1. Once they collaborate, the central institutions lose power–and have to change.

We’ve always had informal conversations in healthcare, among each other–but now they are visible, global and immediate. Doctor-patient relationships, by contrast, are very few.

Collaboration: A doctor finds a problem with a knee joint; the company says it’s a practitioner problem, not a device problem. They will deal with doctors one by one to solve it. The doctor posts an open letter on the web about the device’s problems, which immediately gets distributed within weeks to patients and doctors. Within weeks the company has a PR disaster, and class-action lawsuits.

So: Some medical institutions are trying to prevent health 2.0 from occurring. Doctors can now get patients to sign a contract which prohibits them from discussing their care. They are trying to regain power, prevent the transparent conversation among patients.

Ending quote:

“Things get really weird when you give people access to tools of collaboration.

“Things are getting really weird in healthcare.”

Wikipedia: Time to Pull the Plug

There are many good reasons to deplore Wikipedia, not the least of which is its authors’ cultish smuggery about the righteousness of their cause and the rightness of their content.

Of course there is also its internecine complexity of processes. The documentation tracing the petty bitchery about an entry is often longer than the entry that is produced. The international collectivist negotiation over matters of “fact” is beginning to remind me of the United Nations, but without the fancy New York headquarters.

A recent post by e-health blogger John Grohol left me steaming anew about the nature of the entire enterprise.

The piece details a series of exchanges between a Wikipedia editor and Gilles Frydman, head of the non-profit cancer support community ACOR. The issue was the collective’s refusal to permit links to health-related support groups.

The post includes only one side of the story, and that filtered through the articulate vitriol of Grohol. So I can’t vouch for the details of the exchange. But it is accurate that Wikipedia does not permit links to support groups. [See relevant policy excerpt at end of entry.] On reflection, this astonishes me:

1. Wikipedia is designed to harness the collective intelligence of many individuals, an example of the the classic web 2.0 “wisdom of the crowds.”

2. Online support forums are designed to harness the collective intelligence of many individuals, the classic web 2.0 “wisdom of the crowds.”

Wikipedia leverages the wisdom of the crowds one way. Online support forums do so another way. But Wikipedia won’t assign value to the other–in fact as a matter of policy it pointedly excludes it. Which is to say: The power of the many is a powerful force to disseminate knowledge–except when it’s not.

The hypocrisy is remarkable. To cite just one sad example: The Wikipedia entry on amyotrophic lateral sclerosis (Lou Gehrig/Stephen Hawking disease) is workmanlike. It includes references to mainstream groups like the ALS Foundation. It even includes, god help us, a link to that font of scientific dispassion, the Ride for Life.

But it is utterly silent on the powerful ALS community of PatientsLikeMe, an unusually ambitious patient (and provider) experience- and data-sharing site. To say it serves folks who need to know about ALS far better than Wikipedia–and that it offers a greater amount of authoritative current knowledge–is to understate.

Yet Wikipedia excludes it because it is an online support group, not because it is unworthy. Wikipedia has decided–for expedience? for ideological reasons? for self-interest?–to exclude information not on the merits of an individual source but due to its information class.

It’s a sort of info-bigotry, an attempt to exclude a minority deemed less worthy based entirely on class, not merits. And Wikipedia is itself part of a larger class, web 2.0, which itself suffers similar discrimination!

If we are to exclude one style of responsibly gathering collective wisdom, should we exclude them all? Or–here’s an idea–maybe we should judge individual sources on their merits.

The trouble is, so many people around the world link to Wikipedia, it rides at the top of nearly every topic search results page. This only increases its use and ubiquity, if not hegemony. Its decisions to include and exclude data are magnified across the information universe.

I’m wondering if it’s time for concerned web citizens to stop linking to Wikipedia. If this were to catch on, it would have the effect of diminishing its ubiquity, allowing it to recede to its proper role: a useful but limited, and often deeply flawed, source of information. Just like an online support group, only bigger, and with a chip on its shoulder.

I know, of course, that this is trying to sweep back the sea with a broom. To draw on that U.N. metaphor, maybe it’s time for a different kind of collective action: Wikipedia out of the web. The web out of Wikipedia.

See a continuing conversation about the role of social media in health at this recent post at The Health Care Blog.

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[Wikipedia linking policy on support groups. Note the sniff of condescension implicit in the second paragraph. And note how the Awareness and Fundraising Events sections in its medical articles clearly violate this policy!:]

“Wikipedia’s external links policy and the specific guidelines for medicine-related articles do not permit the inclusion of external links to non-encyclopedic material, particularly including: patient support groups, personal experience/survivor stories, internet chat boards, e-mail discussion groups, recruiters for clinical trials, healthcare providers, fundraisers, or similar pages.

“Wikipedia is an encyclopedia, not an advertising opportunity or a support group for patients or their families. Please do not re-insert links that do not conform to the standard rules.”

Google vs. Microsoft at the Health 2.0 Spring Fling