Growing the Tree Trunk - An Argument for User-Friendly Personal Health Platforms

"A common theme that emerged was the desire to better integrate their health and healthcare into "real life." As a seasoned nurse reported, one of the most common patient questions is “where am I in this care regimen?”"

-Lygeia Ricciardi, Project HealthDesign Blog, fellow Clinovations member

Two months ago I attended the Robert Wood Johnson Foundation's Project HealthDesign day in DC (9.17.08).

Thoughts about the project, PHRs in general, and issues of control (real and perceived) with regards to personal health information, have been marinating since then.

Blogger's Note: Many of you who follow me on Twitter will recognize some of this material from discussions we've had, but for those of you who still rely on the blogosphere exclusively, I'll import some of the dialogue.

This morning I was preparing for an important meeting where I'll talk about PHRs and consumer-facing personal health platforms. Sipping my normal banana, peach, and mixed berry smoothie, I had one of those sudden lightbulb (or lightning strike) moments...

RWJF Project HealthDesign, acting as an incubator, only succeeded because the 9 design teams involved could build on a custom designed platform constructed by Sujansky & Associates LLC.

They had the 'tree trunk' custom bioengineered by a provider whose interest was in creating a viable platform for further application development with a highly specialized goal.

So what can we learn from this in Health 2.0? Who are liable to be the big platform builders?

I think we'll find ANY organization, not necessarily one that began as an HIT or Health 2.0 firm, that builds a COMMON PLATFORM (skeleton, tree trunk, take your pick of bio-aware metaphors) enabling mushroom-like growth of 'add on' applications will succeed big time.

Who's my pick for driving biggest adoption of healthcare incubation activity next year?

Apple. The God of the iPod will strike fear into healthcare executives' hearts as health and wellness apps flourish.

We're talking about an industry where brick and mortar care delivery processes are designed by teams that are still arguing over whether checklists are valid methodologies for CQI. This isn't even a matter of high tech versus low tech; it's closer to a 'no tech' sector (outside diagnostics, surgical, and imaging advances).

These guys will be snowed in by current consumer-facing tech.

Like Detroit's Big 3, they'll be looking for a bailout, or praying President Elect Obama's healthcare gurus (Starck, Baucus, Pelosi, and Kennedy) push for universal healthcare, which would secure payment without requiring consumer/patient-centric process renovation.

Look, if you won’t sell the experience to us properly, then don’t even bother. We’ll just build it ourselves and sell it to one another, or, even more confounding for old-school commercial stalwharts, we'll give it away.

I wonder what percentage of hospital execs read TechCrunch? Use Twitter? I'm sure the numbers aren't pretty.

So why should hospital execs be looking at Apple?

They're throwing open their store (ITunes) for apps they bless. They've built the scaffolding. They're growing the tree trunk upon which other apps can flourish.

Customers are building applications they want to use. It's a consumer mutiny, constructed in a thoughtful, organized, and controlled manner. And it generates revenue. Big time.

Let's take a moment to triage Apple's business case and developmental strategy, from a healthcare industry perspective.

1. Apple adopts consumer-facing orientation, develops iPhone.

2. Apple's IPhone is the common platform (tree trunk).

3. Health applications built for iPhone, including ADAM Health Navigator. Look here:

4. Money DOES grow on this tree trunk - Apple collects 30% cut from all developers.

I'm certainly not the only one focusing on the promise of the platform -Craig Mundie, Microsoft, says it's going to be all about cloud computing, and building the "composite platform(s)."

But locking up access to the common platform with twisted IP and swallowing the key means you may lose apps consumers find valuable. Pay attention to developments in open source and open ID.

From an email by Ted Eytan 9.23.08: "The great thing about Health IT is that it forces all of us to care about what everyone else on the team is doing to support the patient. So, bring it, please!"

Common platforms are the holy grail of Health 2.0 - a missing link between users and organic revenue models that don't throw banner ads in our faces or stuff our inboxes with market-spam.

But current consumer-facing health platforms fall short of the mark.

There's a reason I'm not using GoogleHealth or MS HealthVault. At this point, they're a waste of my time.

And yet, I'm their ideal user - a patient with a long-standing condition that sometimes requires care, daily wellness/fitness habits that I'd like to monitor, and enough Type-A tighta@# adherence that I'd like to actually see graphs of my exercise activity (and caffeine, dessert, and alcohol intake) per week.

And yet. They've failed to grab me.

Why? I just don't like what I see, and I just don't see value in what they're offering. They haven't successfully jumped the cost/benefit hurdle.

Where's user-centered design in healthcare platform development?

When I see it, I'll be patient zero for a well-designed, efficient, effective, safe, easy to share, easy to access PHR.

We're not there yet - reviewing current PHRs (including Google Health and Microsoft HealthVault) is a bit like looking at a narwhal and seeing a unicorn.

But I still want to believe in the possibility of that mythical creature, which is why I'm doing what I do (business plan work, advocacy, etc).

In addition to Apple and Facebook's moving the internet from an ad-revenue based model to an application building and selling model, there's another bright spot: RWJF Project HealthDesign's commitment to patient-centered design principles.

Read - "patient." Yeah. Patients as consumers. Get over it. As Carlos Rizo says, "All consumers will at some point be patients, but not all patients will choose to be consumers."

A fundamental assumption about healthcare delivery must be aired repeatedly (and rinsed, wrung out, hung out to dry, and used again) before we can really engage in a productive conversation about building a consumer-facing platform.

To wit: Our whole medical system is organized to deliver care to one person: the patient.

Even population-based health starts with individualized approaches. Innoculate the individual to stop the spread of disease among the group.

The only element connecting disparate nodes of care delivery in the system is the patient. The patient is the glue. The patient is the medical home. CMS will pay for systems and services that recognize and accelerate patient-centric care modalities.

Applications that acknowledge this centrality will get ahead. Those that don't will have their hands out for a subsidy check.

Patient-centered care is not new; patient-directed care is (to some), and thus threatening.

It's an imbalance of power. If we can hire docs, we'll be able to fire them (gasp).

Providers: Your efficiency, indeed, your clinical acuity is no longer the only factor in question. I'm not going to get into the debate about whether or not this is 'right' or 'wrong' here, but pay attention to your bedside manner.

Is your empathy up to the emerging mantra of consumer-centric care? It should be. After all, you got into this to 'help people' right? That means talking. And listening. And more importantly, engaging.

To those of you (Health 2.0 entrepreneurs especially) going after the upper 10 percent (10 80 10 rule), and even the middle 80: Get ready...you'll have to compete based on more than just your rung on the med school or HIT companies bought/sold hierarchy.

Example for docs: If you don't listen to my concerns before surgery, I'm going to another doc. If you don't rate high among users with my condition, I'm going to another doc. If you don't have a low complication/re-admission/post-op infection rate I'm going to another doc (yes, I know the hospital in which you operate plays a huge role, so you'd better start choosing your hospital more carefully, no?)

I don't give a rats a@# whether you went to Yale or wherever, unless you're able to sell your technical skills to the extent that your glaring lack of people skills don't matter to me (IF I'm in the top 10 percent of engaged e-patients. If I'm hooked up to a vent on the ICU I may not care, but my daughter/caregiver may. Same story, different day).

Another interesting portion of the healthcare platform debate - engaged consumers are clamoring for it, and so are younger, engaged, tech-savvy patients-to-be.

Let's take a look at yet another industry (would-be platform builders should be paying much more attention to sector/industry cross-pollination): higher education.

From a very interesting article in the NYTimes: "Goldman has always made the case that his youth is in many ways his chief qualification. “When I brought this up from scratch, some people said, ‘Look, you’re just a kid — are you really the right person to do this?’ And we tried to make the case that we’re the perfect people to do it, because we’re the only ones who know what college today is really like and who know how to reach other students in a way that someone 20 years out isn’t going to.”"

What the heck does this article have to do with healthcare?

Clue: Include people who are patients. We're the only ones who know what healthcare delivery/receipt is really like and who know how to reach other patients in away that someone 20 years out isn't going to.

This article got me thinking. "Who’s a better judge of a college than its students?" In healthcare, our equivalent question might well be "Who's a better judge of consumer-facing HIT, eHealth, mHealth, and PHR applications than patients?"

And yet, the voice of patient reviews is often lacking conspicuously amongst luminaries on the health conference circuit (as Lodewijk Bos, Gilles Friedman, and Carlos Rizo all pointed out after Health 2.0).

If you're a Health 2.0, 3.0, or 4.0 company, and a person who is also a patient, for goodness' sake, come out of the closet already. Start owning that identity and trumpeting it for its personal challenges and its professional benefits. Health 2.0 companies need a Chief Patient Advocate.

Why? Many of these consumer-facing applications, for lack of a better term, suck.

I'd pretty much lost hope and started, out of desperation, working on a business plan for a combo tethered/untethered PHR.

At the Robert Wood Johnson Foundation Project HealthDesign unveiling in September, for the first time this year, I was sitting up watching videos of personal health applications I'd actually use, created by teams (mostly academic) from the RWJF Project HealthDesign incubator.

I get that many of you don't agree that consumer advocacy is important in healthcare. It doesn't have financial realism (@symtym), etc. And then there's the digital divide, still a gulf with no bridge and only a few hangliders facilitating crossings.

But make no mistake - consumer-friendly tech has enabled us to build our own hangliders. Just because Health 2.0 is currently a soapbox derby doesn't mean someone won't one day build a rocketship.

What would you do, for instance, if someone used a Flip video camera to record their hospital experience? And then uploaded that to their PHR? If sites like Flickr, etc. lets me upload photos now, it' s not a far stretch to say I could upload 12 seconds of video updates from 12seconds.com and then post that on Twitter and thecarrot.com, a personal health and wellness journaling site, describing my hospital visit.

I hear some of you scoffing in the background. "This isn't happening!" you're thinking. Um. Think again.

From the NYTimes article: "Each Unigo editor has a list of 10 colleges (including, always, his or her own alma mater) to oversee; their most important task may be finding an unpaid intern on each campus willing to act as a liaison and an occasional reality-checker for Unigo’s efforts. The real masterstroke, though, was the purchase of a hundred Flip video cameras, which were delivered to the on-campus interns themselves with a minimum of instructions."

Said Adam Freelander, a Unigo managing editor: “Even the best guidebooks kind of make it seem like every college in the country is an awesome place to be, no matter who you are. And that’s not true.” HOSPITALS ARE THE SAME WAY.

“The colleges are going to have to change what they’re doing,” Martinez said. “The pictures of the kids on the lawn won’t do anymore.”

Sound familiar? Involved e-patients are tired of pictures of kids on the lawn. We're tired of providers who block our engagement in healthcare as a conversation.

Ignorance is bliss. Except when, suddenly, you find yourself smack dab in the hospital and desperately in need of a working, easy to use PHR. Let's hope the industry catches up with the need. Someone better start believing in unicorns. Someone else better start designing a rocketship.

HealthDesign? Yeah. We could use a double dose, stat.

Further Reading on RWJF's Project Health Design, PHRs, etc:


steve said...

Funny you should mention this- just this afternoon, I was in a conversation about how wretched the user experiences of most PHR systems were, and I mentioned that if anybody could make a PHR that actual humans would want to use, it would be Apple. Really, all they've got to do is set up some sort of Health Vault-esque service to allow health-related iPhone apps to share information amongst themselves, and they'd be almost there.

kirsti said...

So how does one get more involved with this mission? I agree - it should be user centered design and as a social media person myself who recently contemplated taking a picture of my laptop with its 3 missing keys, after waiting months for my university to get me a new one, the primary tool for my work, U seriously considered taking a pic, loading it to flickr and sending it out over the ether. It is just a matter of time as we have just seen with the Motrin debacle. Power lies with the people....and it is time we started thinking about them as discerning. GREAT POST!

Anonymous said...

Hi Jen,
Agree with most of your post, particularly the lack of good design principles in most consumer facing health apps today. They really are pretty bad. RWJF has done a reasonably good job with the PHD project, but my beef with them is that they are totally disconnected from the marketplace and as far as I can tell, have no tech transfer strategy in place. H*ll, anyone can build a cool piece of technology - its the getting it to market that is often the hardest part.

A couple of points where I differ:
First, I am a strong proponent of using the term consumer for the simple need to break down the paternalistic approach of the healthcare establishment. This is not something that they will give up easily and they throw around the patient moniker as a way to keep consumers in their place.

Second, as much as I admire what Apple has done with the AppStore and have written extensively on it over at Chilmark Research, it is not a true platform, only a subset. Dossia, Google Health and HealthVault are indeed true health platforms, or nice trees from which others will sprout.

Still very early in the game of consumer-facing health apps. Lots of work to do, but it sure is a great place to be right now.

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