Breaking News: Congress Wants to Create National eHealth Network, Legislate Who "Owns" Health Data

Clue - it ain't patients. Google. Microsoft. I hope someone in your healthcare organizations reads this brief. Look especially to the latter 1/3rd.

Browsing Twitter this afternoon, I learned about a House bill draft (HR ____) nicknamed "Health e-Information Technology Act of 2008" from @jesran.

It has not yet been assigned a number, but the draft copy is available here. It looks to be in pre-committee.

Sponsors: Mr. STARK (for himself, Ms. SCHWARTZ, Mr. MCDERMOTT, Mr. MCNULTY, Mr. LEVIN, Mr. EMANUEL, Mr. NEAL of Massachusetts, Mr. PASCRELL, and Mr. LEWIS of Georgia).

IF YOU ARE IN HEALTHCARE, THIS BILL IS THE MOST IMPORTANT THING YOU MAY READ THIS YEAR.

Why is the bill important? Take a look:

• It defines an EHR, and places control of an EHR strictly and SOLELY in the hands of providers and staff (numbers to the left are lines in the bill), p.4:
  

‘‘(1) ELECTRONIC HEALTH RECORD.—The term
18 ‘electronic health record’ means an electronic record
19 of health-related information on an individual that is
20 created, managed, and consulted by authorized
21 health care clinicians and staff of one or more orga
22 nizations, that conforms to standards adopted under
23 section 3003(a), and is made accessible electronically
24 to other health care organizations and other author
25 ized users."

• On p.5, it defines providers as the following, but adds "any other category...determined appropriate by the Secretary":

HEALTH CARE PROVIDER.—The term
2 ‘health care provider’ means a hospital, skilled nurs
3 ing facility, nursing facility, home health entity,
4 health care clinic, Federally qualified health center,
5 group practice (as defined in section 1877(h)(4) of
6 the Social Security Act), a pharmacist, a pharmacy,
7 a laboratory, a physician (as defined in section
8 1861(r)) of the Social Security Act), a practitioner
9 (as described in section 1842(b)(18)(C) of the Social
10 Security Act), a provider operated by, or under con
11 tract with, the Indian Health Service or by an In
12 dian tribe (as defined in the Indian Self-Determina
13 tion and Education Assistance Act), tribal organiza
14 tion, or urban Indian organization (as defined in
15 section 4 of the Indian Health Care Improvement
16 Act), a rural health clinic, and any other category of
17 facility or clinician determined appropriate by the
18 Secretary.

• Pages 5-6 define HIT (line 1 denotes jump to p. 6):

‘‘(4) HEALTH INFORMATION TECHNOLOGY.—
23 The term ‘health information technology’ means
24 hardware, software, integrated technologies and re
25 lated licenses, intellectual property, upgrades, and
1 packaged solutions sold as services that are specifi
2 cally designed for use by health care entities for the
3 electronic creation, maintenance, or exchange of
4 health information. "

WAIT A MINUTE: HIT is "specifically designed for use by health care entities?" Are patients/consumers considered healthcare entities? I'm getting a sick feeling in the pit of my stomach here.

• A new post is born:

"There is established within
8 the Department of Health and Human Services an Office
9 of the National Coordinator for Health Information Tech
10 nology (referred to in this section as the ‘Office’). The Of
11 fice shall be headed by a National Coordinator who shall
12 be appointed by the Secretary and shall report directly to
13 the Secretary."

• Part of his/her job? To pave the way for a "nationwide health information technology infrastructure" that:
  

1. allows for the electronic use and exchange of information
   
2. ensures each patient's health info is secure under 'applicable law' (Hello HIPAA)
3. improves quality
4. reduces medical errors
5. advances delivery of patient-centered medical care
   
6. reduces costs resulting from inefficiency, errors, inappropriate care (say what?) duplicative care and incomplete information
7. ensures appropriate information to help guide decisions is availble at the time and place of care (that one's a doozy - cost? quality data transparency requirements at a national level?)
8. ensures inclusion of meaningful public input (how defined?) in development
9. improves public health reporting
   
10. facilitates research
11. (another doozy) "promotes a more effective marketplace, greater competition, greater systems analysis, increased consumer choice, and improved outcomes in healthcare services" AKA CONSUMER CENTRIC CARE
12. improves efforts to reduce health disparities (wait, healthCARE delivery disparities or HEALTH disparities?)

• Every 2 years, the National Coordinator and HIT Advisory Commitee must update/make new recommendations. This is a VERY big job. Ted Eytan could take it.
  

• When developing recommendations, the National Coordinator must initially refer to DOD and VA, which are cited as models of interoperability for EHRs (GAO report 08-954 p.6-8 specifically cited in the bill) p. 12.

• The poor National Coordinator must ensure that information is collected and transmitted in "a manner that is reliable, accurate, unambiguous and (wait for it...) based on a uniform provider data set (who defines this Uniform Provider Data Set?)." The coordinator's FIRST TRIP should be to Health 2.0. Next trip to New Zealand. Third trip to Medicine 2.0.

• Sensitive health information may be "segmented" ie broken up into little pieces and scattered into the wind to protect our privacy. Great. Good luck putting that broken picture back together, p. 14.
  

• Shocker: To the "maximum extent appropriate" coordinator must incorporate CCHIT ambulatory and inpatient certification criteria.

• National Coordinator will solicit public input via open public meetings and comment periods, p. 16.

• She will also develop a program "(either directly or by contract)" -ummmm, SOMEONE's getting paid...-for the voluntary certification and periodic recertification of HIT systems and components.

• The National Coordinator needs to be an open-source guru too, using definition of 'open source' as defined by the Open Source Initiative.
  

• She will have to "provide for coordinating the development, routine updating, and provision of an open-source health information technology system that is either new" or based on an existing system. This system must be made "publicly available for use" 9 months after adoption of initial standards by Secretary (laughing, wiping eyes), p.17-18.
  

• National Coordinator shall establish a consortium of tech, legal, clinical geeks familiar with open-source. Hello - patients? I'd give my right arm to be on this consortium. Probably literally.

• OH MY GOODNESS. National Coordinator = Merchant of Venice. She may charge "a nominal fee" for the adoption "by a healthcare provider of the health information technology system" p. 19.
  

Wait a minute.

So not only are we not INCENTIVIZING doctors' use of EHRs, we're going to CHARGE THEM TO USE THE NATIONAL EHR SYSTEM?

But wait. It's all ok. If I'm a smaller provider or in a rural area I may get a price break - there is a "significant hardship exception" available to those working in areas with no Internet access (p.53). Also, hospitals may get paid a million bucks to implement (p.59), PLUS discharge volume incentives. Thanks Uncle Sam.

Also, later (p. 44-45) the bill seems to say (I could be wrong on this quick+dirty read) that IF you successfully implement and become a "meaningful user" by 2014 you get $15k. By 2015, you get 12k, 2016, 8k, 2017, 4k, and by 2018 only 2k to line your pocket.

How do they determine 'meaningful use?' Maybe by looking at drug claims submitted via the system.

Oh, and by the way, the National Coordinator has TWELVE MONTHS to develop a strategic plan detailing how to achieve the above objectives. After which case a straightjacket or lobotomy may be necessary.

The plan must also include timeframes.

The National Coordinator has to publish the strategic plan, and then subsequent implementation reports every 12 months. She can create and use task forces and work groups, in addition to the HIT Advisory Committee, for help here.

Of course, the coordinator also has to do a website, which includes grant information for HIT implementation, and appoint personnel. Staff will be funded by appropriated monies from 2009-2013.

Also, the office gains revenues from an "open source product licensing fee" (p. 26).

So, who are the National Coordinator's Knights of the Round Table? The HIT Advisory Committee. Who's on the Commitee?

1. DHS appointees from AHRQ, CDC, CMS, HRSA, IHS.
2. 1 member pick from Senate majority leader.
3. 1 member pick from Senate minority leader.
4. 1 member pick from Speaker of the House.
5. 1 member pick from House minority leader.
   
6. Presidential appointees from Veterans Affairs, NIST, and DOD. Yep. DOD!

In addition, the HIT Advisory Committee contains a very interesting dozen appointees chosen by the Comptroller General of the US. These '12 disciples' include:

• 1 advocate for healthcare patients and consumers (!)
• 2 healthcare provider reps (1 a doc)
• 1 from labor union (uh oh SEIU, make sure we don't get a doc from BIDMC on here too)
• 1 member with expertise in privacy/security
• 1 w/experience improving health of vulnerable populations
• 1 member from health research
• 1 health plans/3rd party payors
• 1 HIT vendor rep
• 1 shall represent purchasers or employers
  
• 1 w/expertise in healthcare quality measurement and reporting
• 1 w/expertise in open source HIT systems
  

The HIT Advisory Committee will have 1 Chair, 1 Vice Chair, one of whom must be from public sphere, one of whom must be from private sphere. Members are paid a per diem rate and are reimbursed for travel expenses. Members serve 3 yr terms, and 10 constitute a quorum.

STANDARDS SHOULD BE ADOPTED NO LATER THAN SEPTEMBER 30, 2011 (p. 33).

But adoption by "private entities" seems to be voluntary (p.34).

The National Coordinator will develop an HIT Resource Center to develop best practices, provide tech support, and accelerate the aims of the bill.

Now let's move on to carrots and sticks.

CMS and other federal agencies "relating to promoting quality and efficient healthcare in Federal government administered or other sponsored healthcare programs" may require providers to implement the system (play or we don't pay, p.40).


Medicare Advantage plans (MAs) get a variety of special incentives described with a rules schedule that's dizzying - check out pages in the 70s.

Also, there's a $115M pot of grants and loans available from 2009-2013.

Grant and loan programs may also be funded by agencies such as AHRQ available for providers and also for states and Indian tribes. Read pages in the 80s and 90s. Grant and loan recipient must demonstrate sustainability of quality improvements and cost decreases.

Medical Education Evolution folks take note - Special grants and efforts to develop academic curricula that incorporate HIT use and adoption in clinical education are proposed on page 99. Requirements are spelled out on pages 100-103. 10M bucks is available for these initiatives from 2009 -2011.

I can hear the contractors salivating now. In fact, I should start a contracting firm. It'd qualify for minority owned discounts and incentives and I'd be competing in a protected space as a female owner/exec for the duration of these funds (2009-2013). How's that for a Health 2.0 business model?


How will Joe Six Pack and Alaskan Hockey Mom learn about this initiative?

No later than a year after this bill passes (and may God have mercy on our souls), the Office for Civil Rights within DHHS will "develop and maintain a multi-faceted national education initiative" (read - poorly designed website with long, counterintiutive URL where they slap up patronizing information and quizzes) to "enhance public transparency regarding uses of their protected health information, the effects of such uses, and the rights of indivuduals."

This office will spend 10M dollars to implement this campaign. Give me 10k and I'll start a bloggers campaign that would reach more people and generate more buzz.

Big Picture Issue? Great. The government will now have access to my EHR. In fact, the government will OWN my EHR, and pay docs to keep it out of my hands.

Or so it seems at first read. On page 125, however, the bill authors tell me patronizingly that I can "obtain from such covered entity a copy of such information in an electronic format," AND that the provider can't charge me for that copy.

Well, at least they ARE saying the data can't be sold without my permission (page 125).

And on page 128 they say that providers can't use this information for marketing purposes, or to send a communication that "encourages recipients of the communication to purchase or use the product or service." In legal language, they're not considering that a qualified "health care operation."

What Happens if Your Data Gets Out?

Breaches and other privacy and security issues are covered in pages from 103-118; Google, Microsoft, and other PHR vendors will want to read p. 110 closely:

• VENDOR OF PERSONAL HEALTH (p. 110)

2 RECORDS.—The term ‘‘vendor of personal health
3 records’’ means an entity that offers or maintains a
4 personal health record. Such term does not include
5 an entity that is a covered entity for purposes of of
6 fering or maintaining such personal health record.

Big Govt. is also going to take on Google and Microsoft. Read page 131 guys. Read it again. And again.

You heard it here first: 1 year after this Act, the Secretary and the FTC will do a study on privacy+security requirements "to entities that are not considered covered entities" (see page 132, line 7, where the gauntlet is thrown, and your advertisers should you allow any, on line 8, and your partners - perhaps even patients and users, line 15). See also "business associate contracts" page 137.

And little PHR vendors, you're not out of the woods either. The government will investigate clients using your site as a cobranded app or customized PHR portal. See page 132, line 19.

Why you should read this bill draft again, and again, and again:

1. It's a mountain of legislation that makes HIPAA look like a molehill.
2. It also systematically reinforces the position of patient as 'other.'
3. Consumers will not have control over personal health narratives. Our input to PHRs is trivial, 'outside' the system and relevant only for our personal use.
4. This bill would ensure that PHRs and EHRs will forever remain disjointed halves of information necessary to improve care.
5. It does not provide adequate time for the government to develop or acquire such a system.
6. It does not provide adequate incentives or support for docs to implement such a system.
   

But, if you aren't using PHRs by 2018 anyway, I'm betting you're out of business sometime in the next 10 years.

Now, what are you going to do about it?

PS - I nominate Dr. Richard Reece for National Coordinator position. I nominate Dr. Stanley Feld to be the next Secretary of DHHS.

Part III: Go Edupunk - Healthcare Incubators: Time to Burn or Become Steel

Blogger's Note: Today I'm skipping around a bit during our week-long look at healthcare incubators.

Before we look at when incubators in healthcare/startup health WON'T work, let's take a look at what's working from the business end of startup tech incubation.

Part of the problem with incubation in startup health is that startup tech has been playing this game for at least 2 decades.

As a result, they've got a cast of characters - expected players who will scoop in and pick off any smaller firms whose products and services they want to integrate.

Want the ultimate exit? Look for acquisition by Google, Microsoft, Yahoo, etc.

But it wasn't until earlier this year that Microsoft and Google's health interests pushed them into releasing PHRs. In health, we couldn't look to the big boys for adoption. But that's changing as we move towards consumer-centric care.

So who might we expect to see adopting healthtech incubators' grads? Of course the same cast of characters is now attending to our space, so you might go after Google, MS, Yahoo.

But what about other firms?

Of course you could look to big pharma if you've got biotech grit, or one of the DTC genomics firms like 23andme if you're working in genetics/medtech equipment or processing.

But what about hospitals? Are big brick and mortar healthcare factories looking at investment in startup health?

Sure, but probably not at the level of a total acquisition - they're much more likely to cough up cash for partnerships or to pay for leasing/subscription/installation/service/support fees.

Wait a hot second...That's AT LEAST 4 big potential markets for health startups (big tech, pharma, biotech/genomics, hospitals).

So why aren't we seeing more incubators birthed to take advantage of a group of buyers with big wallets in a space that's, as Unity Stoakes puts it in this Organized Wisdom interview with Esther Dyson, "under-focused on and under-funded?"

It's crucible time for consumer-centric healthcare tech; as a recent issue of SmartBrief Leadership e-newsletter put it, time to "burn or become steel."

The Health 2.0 movement is at a precarious turning point ("the terrible 2s") - we've got companies with some very interesting traction, large community strength numbers, and even a few with some revenues in the black (a very few).

But the cyclical boom/bust nature of tech movements, including startup tech in health, opens wide the doors of opportunity for investors and larger big money sector leaders to fund incubation.

For goodness sake - we're dealing with people's most precious asset (even above financial security) - if you don't have life and limb intact it'll be hard to enjoy the fruits of the post-bailout economy.

You'd think more companies and individuals would be flocking to the space to look at incubation and VC/mentoring networks. But it's still a pretty insular world.

If startup tech can be THIS creative - with an online artisan food marketplace I love, Foodzie, birthed in the 2008 TechStars incubator, blogging about a "Magic of Mole" cooking class (warning: 'gastroporn' alert - do not look at the Foodzie page while hungry!) at La Cocina, an incubator for food entrepreneurs - SO CAN STARTUP HEALTH.

Want to see more examples of startup tech incubatees? Here's a look at some of the firms in the Y Combinator stable.

If you want more startup tech ed, check out this short video interview with VC investor Brad Feld, who reminds us that incubators are NOT the same as angel investing. But angels are a series for another time...

ADDITION: Just to really get your bloomers in a bunch, here's an irreverent panel at CommunityNext moderated by Guy Kawasaki that blows business model and 'standard' VC value benchmarks right out of the water.

The point? We need more innovation in HIT, eHealth and mHealth, not less.

I'd like to see increasing design-consciousness among medical equipment manufacturers in particular - haven't they learned anything from Amy Tenderich's open letter to Steve Jobs and the Diabetes Mine Design Challenge?

Need examples of the kind of innovation I'm talking about, and how it might be specifically translated to healthcare incubator selection?

• Reserve a spot in an incubator for a medical equipment maker looking to integrate biomimicry.

• Recruit a company, or university team, looking at bringing a product to market related to accessibility and gaming.
  

• A no brainer? A startup team designing a fitness game for the Nintendo Wii or for wiihabilitation.

Startup health incubator. Steel health. Steal Health? Crucible? Hmmm. I like it.

I like it alot.

Any investors want to do a startup health incubator?

Tune in tomorrow for when incubators in health WON'T work, and a discussion of the elephants in the room, including IP.

Remember the Search Engine Wars? Get Ready for the Health App Wars

Microsoft has been quietly scouting and scooping Google on establishing "strategic collaborations" with Health 2.0 firms including American Well.

They're also stepping up the competition surrounding opensource/openid signons and sharing APIs (within set strategic parameters of course - this is still MS World we're talking about).

Who has the better health product? Debatable. At this point, probably inconsequential.

Both Google and Microsoft's slide into the consumer-centric PHR space are helping advance the market in general, as Keith Schorsch points out over at The Health Care Blog.

What matters right now is which company is able to establish a cutting-edge, market-share takeover.

My personal opinion? Neither utility is consumer-friendly enough to reach 'killer app' adoption rates of 30-40%.

Why? I've played with both tools and won't use either one, and I'm definitely the type of hyperinvolved e-patient these firms want to be wooing.

I agree with Keith that the firms are still getting it wrong:

"PHRs and electronic medical records remain an industry-driven vision, not a consumer-driven one — focused on efficiency and reducing costs. It seems we’ve lost sight of whether the consumer really desires and is willing to participate in these services."

I most definitely desire and am willing to participate in these services, when I find one that's functionally useful, stores information in an easy-to-share format, and is above all else, user friendly.

Current offerings don't come anywhere close on ANY of these points.

Unfortunately for consumers, the Health 2.0 PHR domination wars are currently all about quantity, not quality.

Right now it looks like Microsoft is winning. But looks can be deceiving.

And it remains to be seen if this early leading edge will allow Big Evil to stay ahead of the competition, especially if a new killer app enters the market and consumers adopt it quickly en-masse.

A scrub of press releases reveals multiple Microsoft partnerships in the past month (I'll do some digging and see if I can't figure out a TechCrunch-style list later today).

Now, Google could have inked just as many agreements, but may not be releasing info on them yet.

Let the Health App Wars begin...

Waiting For The Killer App & Why I Don't Give a S%$# About PHR Security

Just before moving to Holland, I received a letter from the community hospital in my old hometown, where I was both a patient and an employee.

The letter informed me that my medical record was stored on a laptop that was stolen.

This wasn't my first experience dealing with identity theft. Nor will it be my last.

When I was 17 and applying for federal student aid, I learned my social security number and name had been appropriated and used to apply for credit cards.

Since I wasn't in my thirties living in the Midwest, this was relatively easy to clear up. I just had to prove my identity and then reapply for student loans (overlay heavy sarcasm here). I had to take back possession of my data.

Studying Shakespeare with an SMCM contingent in England during the summer between my junior and senior year of college, someone in London made a copy of my debit card and used it to bookroll a pub crawl in Ireland.

Again, relatively easy to clear up, as my Passport didn’t have a Dublin entry stamp in it, but I was missing some money for awhile (again, insert sarcastic overtones). Again, I had to take back possession of my data.

Why am I not more concerned about my identity or medical history being accessed inappropriately, even stolen?

Because it’s already happened. To millions of us.

My world didn’t end. Identity theft can be debilitating, yes.

So can injury, illness, and not being able to remember what medications you’re allergic to and get that information transferred to your new ankle surgeon.

The simple fact is, if identity theft hasn’t happened to you yet, it probably will. Sooner or later. Most likely more than once. This is, literally, the price we pay in an interconnected, web-linked world.

Even worse is the way the healthcare industry co-opts my personal health data.

To the healthcare industry...

Why do I have to take back my healthcare data from you in broken pieces and recreate the trail of my personal health narrative the same way I have to repossess my financial data from identity thieves?

Being able to access my information anywhere means it is slightly more vulnerable, but only slightly more so. And that’s a price I’m willing to pay to access my bank account online from anywhere I am in the world.

The banking comparison has been made often, but isn’t yet tired (or tested), since no PHR provider has built out offerings with a comparable level of service to what many financial institutions provide.

Banks have taken reasonable steps to ensure the safety and security of my account, both online and offline.

I trust my bank enough to walk up to an ATM machine and put in a small portion of data and pull out cash. Is that transaction risk free? Of course not. But my risk has been offset ENOUGH for me to believe the benefits outweigh the potential risks.

Other online commerce platforms have done the same. I no longer fear using my credit cards online - in fact, if I can't use PayPal or a credit card, you're not likely to get my business.

As I select my next doc, if you're not using email, you probably won't get my business.

I’m willing to pay a similar price to be able to access my health data and craft a personal health narrative online from anywhere I am in the world.

We need to stop pretending healthcare is the industry in which our vulnerability opens us up to the most potential for avaricious theft and misuse of data.

This is a naive, overly simplistic excuse used to dismiss the end value of using personal health records and giving consumers shared control over the co-creation of a personal health narrative.

Get over it. We already co-create our personal health narrative – what do you think a history and physical interview consists of? The doc asking questions, the patient giving largely subjective answers, and then that information being ‘objectified’ and codified into that provider’s medical record.

What slays me is that we do this over and over and over.

Talk about inefficiencies and misaligned incentives rampant in our healthcare system...we have to recreate meaningful interactions and establish a solidified platform of shared data at the beginning of EACH and every visit with a healthcare provider.

And it's not new information, building on backstory to establish timely relevance, it's the same old H&P data that's stored 500 other places in disjointed medical records.

If my doc could access my personal health narrative and then ask questions directly relevant to my history (“Still having trouble falling asleep?”) we might actually get somewhere in the 2.45 minutes she has to sit and talk with me before tearing off a prescription sheet.

This is an old, tired argument.

We’ve been trying to get PHRs implemented for 40 years, yes. Currently less than 2% of the American population is using them, yes (per Revolution Health's Jeff Gruen at WHCC). But the pace of adoption will accelerate.

We won’t be able to limit the exponential growth of personal health data for long.

Personal health narratives are becoming increasingly interwoven into the daily societal lexicon. Presidential candidates are sharing details about emotional struggles related to infidelity and the battle to quit smoking.

Let’s get real. We’re comfortable accessing our health information. More than that, we don’t just want to access it, we want to share it.

If you’re having a hard time imagining widespread personal health exhibitionism, wander anywhere near someone talking in public on a cell phone. Chances are you’ll overhear more personal health/wellness information than you’d ever gain from stealing his/her medical records.

When we say consumers aren’t ready to accept these privacy risks – I have one question for you: Which consumers are you asking?

Are you asking those of us who visit a doc more than 2x a year for a preexisting condition?

Are you asking those of us who have 2.345 kids and need to tote information from allergist to pediatrician to orthopedist to dentist and back home again?

Are you asking those of us who have a ‘zebra’ condition that requires we be an active, participatory partner in care in order to help educate our docs about what works and what doesn’t?

Perhaps as a consumer I am "20 years ahead," as one friend put it this weekend.

We were discussing a concept for a killer app SaaS portal that partners with existing Health 2.0 and 3.0 companies and provides a backend PHR function.

The debate got rowdy when we started discussing how long it will take for the same percentage of the American public to use PHRs with the same self-assured, immediately assumed utility we use Google (8M health searches a day via Google, by the way).

My argument was that maybe I’m 2 years ahead, but not 20.

Cigna, WellPoint, Aetna and co. are already committing to making members' personal health data portable outside their existing coverage plans.

Still, this is giving consumers some control but not the tools that allow us to cross-pollinate that data across various brick-and-mortar and virtual healthcare delivery interactions.

I told him to try one simple, personal means test: Gather all his records from the past 5 years of doctors visits and try to get them transferred to a GP here in Holland. See how long that takes. Say goodbye to the rest of your calendar year.

Even if he does just call physicians’ offices and request faxed records, good luck getting all the coding and billing info and getting complete access once you tell them you’re in Holland. You’ll bear the burden of proof for demonstrating that you’re ‘you’ and you want access to records.

Personal health record developers – take notes. Don't try to limit my access to my own information.

Make the web-based platform easy enough for me to use so that I can email records right to my doctor or hospital.

As soon as someone provides a PHA (personal health application) with a bare minimum level of security and the portability I’m looking for, I'm there. And I’m your number one evangelist, your ‘ground zero’ patient tester.

If one doesn't enter the market fast enough, well, perhaps I'll just create it.

And that’s another important distinction.

There’s a reason PHRs and EMRs aren’t working. They aren’t enough. What we need most isn't a PHR. It’s a multi-functional PHA.

It's an opensource, multifaceted killer app, an SaaS portal that provides a single access point to multiple health/wellness nodes like American Well, Organized Wisdom, and Phreesia.

To entrepreneurs (and especially Google and Microsoft) - forget the PHR.

Give consumers an offering that provides a single gateway for me to access health content, wellness communities, and perform related purchase (commerce) activities. Give me FreeMED combined with functionalities for patients.

These tools are great starts, (hat tip to The Healthcare IT Guy) but they're missing the consumer-centric coherence that's essential to 'nexthealth' or Health 4.0 (content, community, commerce, and continuity).

I can't go any one place, access a single personal health application, and do anywhere near everything I want/need to do with my personal health data.

Here's just one example of how consumer interaction with the system would change: Imagine what would happen if I could login to a single PHA portal and resend claims/insurance data to the medical billing company that's trying to charge me full price for a covered visit?

Then the industry would REALLY have to adapt to meet consumer demands.

To developers - give me this capability and more.

Go straight for a PHA that lets me chat with a doc online, print out a Wisdom Card, and schedule an appointment. Let me login to SugarStats.com from your portal, and simultaneously export my latest glucose readings to 1. my linked PHR, 2. my mobile phone, and 3. my doc.

Give me the access, let me create the record, let me download information, let me access communities, let me show my doc or nurse how to pull up my PHA on the web and create shared meaning – let me be your disruptive innovation embodied.

Give me some of the responsibility for maintaining my health. Start with letting me access my own health record.

If you can't even let me maintain my own PHA, how are you ever going to loosen the hold on the reins for me to take a proactive role in working towards my personal wellness goals?

If you don’t, well, someone else will just have to accelerate that 20 year timeline.

Crazy? Sure is. Most game-changing innovations are.

From George van Antwerp @WHCC:

“Data is only exciting if you can do something with it.” [Reed Tuckson]

Final food for thought, from "How to Fix the Web," by Rob Scoble, Fast Company, May 2008:

"It’s time that we stop hoarding customers and their information in silos for fear of them straying. If you love them, set them free.”

PS - If you think keeping my records offline keeps me safe, think again...