Thankful for Life? Talk With Your Family About Dying - Engage with Grace

Blogger's Note: Please. Talk with your family, friends, advocates, and caregivers about end of life choices. Do you have an advanced directive? A living will? This is *not* the kind of thing you want to leave til the last minute (literally). Live well. Engage with grace.

From the Engage with Grace team:

We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it.

This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones "know exactly" or have a "good idea" of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences.But our end of life experiences are about a lot more than statistics. They're about all of us.

So the first thing we need to do is start talking. Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences.

And we're asking people to share this One Slide - wherever and whenever they can. At a presentation, at dinner, at their book club. Just one slide, just five questions.

Lets start a global discussion that, until now, most of us haven't had. Here is what we are asking you: Download The One Slide and share it at any opportunity - with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started.

Let's start a viral movement driven by the change we as individuals can effect...and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them. Just one slide, just one goal. Think of the enormous difference we can make together.

To learn more please go to www.engagewithgrace.org.

Dying is never easy. Don't place an added burden on your family by requiring them to sort out these decisions for you.

Don't just read and talk about your choices. Document your wishes for future use.

"As a health care lawyer, my occupational disability is seeking to ensure that conversations started through the one slide actually end up with properly documented health care directives that are entered into medical records and discussed in advance with physicians and caregivers."

Blogger David Harlow provides a link to legal forms for end of life care here:http://healthblawg.typepad.com/healthblawg/2008/11/engage-with-grace.html.

Get started thinking about how you want the finish to go. Can you control death? Prevent dying? No. But you can spell out how you'd like to be treated. Engage with grace.

If you follow me on Twitter, you'll see updates related to the Engage with Grace project throughout the week, including how my friends and family have prepared and documented wishes for end of life care, marked with the #engagewithgrace hashtag.

Plug that term (with the number sign preceeding) into Twitter Search, or just use the terms 'engage with grace' and 'one slide' to look for more.

Special thanks to Bob Coffield (@bobcoffield) who engaged me with an eloquent email, and provided the links below:

Watch Alexandra Drane tell the story that I heard at the Health 2.0 Conference:

Read the Boston Globe's article today:

The Engage With Grace main page:

Special special thanks to Matthew Holt and the team at THCB (John, Sarah), and Paul Levy and the BIDMC community, Running a Hospital, for getting this conversation started. Now, take it offline people.

Special special special thanks to Alexandra Drane. This was gracefully done. Thank you.


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:


7 Ways Healthcare Will Surprise You Next Year - Part IV

Let's finish up this tweetsourced series on a positive note, with Chris Hogg's 7 hopes for healthcare (verbatim):

great question. i dont know if these are really surprises, but things i think (or hope for some) might happen

- unfortunately, it will get significantly less attention from new administration than we hope/expect, due to other 'more pressing' commitments

- significant increase in applications developed on google health / microsoft healthvault platforms, with some of them actually being useful, although funding will become increasingly difficult for these startups. significant increase in press for these platforms/applications

- first hint at what the killer app will be for google health / microsoft healthvault platforms, although it will not yet be widely adopted (is this the first view of what the 'trunk' might be?)

- restriction barring Medicare from negotiating prices with Part D plans will be lifted, with dramatic impact on pharmaceutical company stock prices, but benefit to overall health industry

- significant consolidation in biotech / pharma landscape, with multiple biotechs going bankrupt / acquired in weak cash positions

-may see a minor (or regional) health plan fail under pressure from increasing HC costs and decreasing reimbursement (with a sprinkle of bad management), but this would create a big scare for insurers

-one major CLINICAL advance in personalized medicine. i hope it will be approval of Nuvelo/ARCA's heart failure drug, or Vanda or PGx Health approval of PGx drug for CNS. if it happens, should get a lot of press.

Best Regards!
Chris Hogg

Thanks Chris! Later this week we'll explore platforms in more detail (aka the 'tree trunk').

7 Ways Healthcare Will Surprise You Next Year - Part III

In part three of our series on ways healthcare will take us by surprise in 2009, we get a view from health publisher and family doc James Hubbard, MD, MPH (@DrHubbard).

Dr. Hubbard's input was gathered by Leigh Ann (@FamilyDoctorMag), Managing Editor for My Family Doctor Magazine.

My Family Doctor aims to be "your trustworthy, evidence-based source for reliable health information."

Dr. Hubbard's big pick for first horse across the finish line:

"Medications imported from other countries will become much more prevalent. By the end of the year, there will be headlines about reports of tainted quality."

Buying drugs from across the border has hit relatively 'old guard' consumer-facing sites like About.com, and with China's recent tainted milk crisis, it's only a matter of time before manufacturing defects are found in a variety of medical goods, from medication to hip implants.

The real surprise next year may be how the FDA responds. In 2006, the agency restructured its Center for Drug Administration and Research, placing improved medication safety at the top of the to-do list.

How has the landscape changed in 2 years?

Well, in addition to shrinking pharma development pipelines and hospitals/AMCs banning drug reps bearing gifts, the election of Obama to the US presidency might bring some significant change, especially since the throne is empty.

Dr. Hubbard, you're absolutely right. Global medication development and flow, as well as medication safety, will be a hot topic next year.

Let's just hope we hear more about FDA innovation before breaking news tells us the foreign - sourced Ibuprofen we took last night may kill us.

7 Ways Healthcare Will Surprise You Next Year - Part II

Part deux in our series of crowdsourced "ways healthcare will surprise you next year" provided by CTO @ Healthways) who views his mission in life as pointing out the obvious.

Scott's not afraid to tackle the issue of carrot/stick incentivization head on...

Via email Scott shared his belief that next year we'll see organizations penalizing staffers for NOT making healthier choices.

Reverse incentivization rears its ugly head in 2009? Do you agree? Disagree?

Predictions from Scott:

"Employers get serious about outcomes.

Stop using incentives as merely "carrot and stick" to get people to enroll and engage in programs, and start using them for what they really should be: value for cost.

It's not enough to offer an incentive for a member to join the wellness program, or even to get that A1c checked

If you tracked outcomes from your programs in a meaningful way, then you can start to adjust payment for said outcomes.

Value for cost. I will pay more for a positive outcome than just performing a test.

What was the RESULT of that A1c test? Did it get better than the last one? HURRAY! Here's $100. Keep on keepin on. If not, then maybe your premium contribution is going up $200 next year.

The point being that it should hurt your
pocket book now if you're not going to be actively engaged in managing and improving your health status.

Not defer that financial pain 20 years from now, when it's more likely to impact many more stakeholders.

Just my $.02."


Scott, thank you - worth a lot more than .02 cents.

7 Ways Healthcare Will Surprise You Next Year - Part I

President-elect Obama's campaign used social media and online networking sites/applications to crowdsource support. But community is good for more than spreading a relatively watered down mantra like "change."

Like this year's presidential election, social media and networking sites are breaking down some siloed barriers in the healthcare strata. On Twitter, I chat with docs, nurses, med students, marketers, health executives, entrepreneurs, analysts, etc. Would I ever have the opportunity to find and initiative conversations in the brick-and-mortar delivery world with such a diverse group? Not bloody likely.

So what kinds of things do we, the health-e-nation, talk about online? What visions and missions grab and hold us?

Here's an example: Crowdsourced on Twitter, this week we'll take a look at 7 ways healthcare may surprise you next year in a series of posts.

After I tweeted a link to this McKinsey article, asking for opines on surprises we'd have in healthcare, 5 health tweets answered the call.

These folks are some of the most informed, proactive crowd of prognosticators the world over, so I'd give at least Superbowl-winner type attention to their predictions.

First up in our series is Zane Safrit, who actually gave us a bonus prediction.

Zane thinks healthcare next year will surprise us in these 8 ways:

* More expensive, even more expensive than we project now.

* More people will be uninsured. That's from the economy, it's more expensive and insurance companies will fight to preserve their kingdom.

* The ugly truth will emerge. That will be around either side-effects from drugs barely reviewed, huge ongoing ethical lapses with researchers/doctors/big pharma and their products and relationships or poorly performing hospitals/clinics.

* More openness and transparency. That leads to the previous point. That leads to the insurance companies fighting harder to preserve their oligopoly.

* More participation. More engagement by the consumer in creating OUR healthcare system. That will be seen in more anger and more demands..and more solutions. See above points.

* Huge turmoil by end of the year in the institutions delivering healthcare: FDA, AMA, Big Pharma, Corporate hospitals, Congress. The boil they've created with our permission is being lanced. It'll be messy for awhile.

* Movement towards an universal healthcare system by year's end. Movement. Resignation by opponents. And embrace of mandated health insurance like we have with car insurance.

* Pandemic. There will be some new pandemic, like AIDS/HIV. MRSA may be it. Bird flu isn't it.

That's 8.

Zane Safrit
twitter: zanesafrit

Thanks again Zane for your top 8. Pegging the 'new pandemic' is also interesting because it's part of the GAO's 'hot list' of urgent issues for President-elect Obama's incoming staff - see number 8, preparing for public health emergenciehttp://uspolitics.about.com/b/2008/11/06/throwing-down-the-gauntlet-gao-lists-13-urgent-issues.htms.

Dear readers: You can follow Zane on Twitter here. Zane blogs about healthcare issues every Monday.


YES. We Can.

President Obama - congratulations.

If you need an international healthcare team focused on innovation, we're already assembling one on Twitter.

I donated to the campaign. I was at your speech at Manassas. I'll be here commenting on your policy. I'll be here - fired up. Ready to go. So will many others on Twitter.