Engage with Grace

Written by Alexandra Drane & 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.

Is it possible for us to imagine a world where that power of data is not brought to bear on life and death, on clinical care, on population health?

From Farzad Mostashari's introductory comments to the HIT Policy Committee, November 7, 2012

It's been an eventful time since our last meeting together.  Some of you are still struggling with the aftermath of Hurricane Sandy.  I know at least one of the members who is still without power and anticipating the Nor'easter bearing down on the east coast again.  It demonstrated for all of us the need for us to come together and the impact that working together we can have - - private sector, philanthropies and government working together.

Of course, on everyone's mind is also another event - the elections.  I was struggling last night to capture all of the swirl of thoughts and emotions about last night and I summarized it in my own mind... and on twitter... in one word and that word was "data".

It was admiration and appreciation for the role that the power of data have played in the campaign.  It was also the appreciation for how that if that power of analysis and data has transformed marketing, campaigning, baseball,  how is it possible for us to imagine a world where that power of data is not brought to bear on life and death, on clinical care, on population health? And affirming the path that we're on around health IT and bringing data to  life.

The second was the appreciation for truth in data.  There was lot of discussion that many of us followed, whatever our political persuasion, around whether the analysis of surveys was going to found to be accurate or whether the journalistic epistemology of "uncertainty equals equality"  was going to be shown.  There was something of I guess relief that data matters, that science matters, that predictions can be based on evidence.  For all those who are following Nate Silver and 538 predictions it's truly remarkable.  We sometimes see this in our little corner of the world where  the preponderance of the evidence, 92% of studies can be positive and showing the benefits but if there is uncertainty, if there are differences, the journalistic urge to create some sort of narrative of two equally opposing realities can become the narrative of the day.  So there was relief in seeing the truth in data.

And finally there was the relief when those probabilities converge to the binary, the zero/one, the data, the fact of the election - that goes either one way or another and resolves itself.  Now we are thinking "what does this mean?"  Everybody would agree that it gives us in the administration more time to finish the job.  We've made incredible progress in the past four years on health IT.  In my view it gives us a chance to  continue to make strides, to continue the essential  thrust of the policies and approaches.  But it also, as was pointed out, affirms our responsibility to do the people's work, to come together, Republicans and Democrats, to do the people's work.  This committee appointed by Republicans and Democrats with stakeholders from patient advocates, doctors, hospitals, payers, researchers, vendors embodies that coming together for the common work - - the focus on challenges that we can only solve together.

We can disagree  sometimes on how to get there.  Progress has always been through fits and starts.  it hasn't always been straight line.  Not always smooth path.  But the painstaking work of building consensus -- there 's no substitute for that in health IT, in standards or in the broader policies.  And that is what we are commited to - the painstaking work of building consensus.

Now as we look at what the president said -- that the value of citizenship doesn't end with our vote. It's not just about what could be done for us, but about what could be done by us through the hard and frustrating but necessary work of self-government.  That's what this Policy Committee, to me, embodies.  We need to keep reaching, keep working, keep fighting and take the time to look afresh at what we're doing.

Today we'll go through the next stage request for comments that the meaningful use work group, information exchange work group, privacy and security work group and others have put together.  One thing I'd like to  challenge us is whether we're pushing hard enough on interoperability. Whether there is more that we can do.  Whether it's around query based exchange and all the cluster of identity matching and patient consent issues that come with that. Are we moving fast enough with the privacy and security that must accompany the greater availability and greater flow of information?  Whether it's around two factor authentication, or audits and consent management for sensitive information?  Whether we are doing enough to make sure as we make progress that safety is addressed as much as it possibly can. And that we're setting the stage for innovation.

So that is going to be the opportunity for us, as we move forward, to step back also. I'd like to ask the policy committee, as we'll go through the request for comment, to at least just ask if there's more.  If there's a slightly different take that we could pursue to make these come true.  Although we have been given more time -- a week, a month, a year - - and before you know it, the opportunity for that urgency is lost.

Thank you.