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.

Digital Data Improvement Priorities for Continuous Learning in Health and Health Care

Digital Data Improvement Priorities for Continuous Learning in Health and Health Care - Workshop Summary - available free from the Institute of Medicine.

"Digital health data are the lifeblood of a continuous learning health system. A steady flow of reliable data is necessary to coordinate and monitor patient care, analyze and improve systems of care, conduct research to develop new products and approaches, assess the effectiveness of medical interventions, and advance population health. The totality of available health data is a crucial resource that should be considered an invaluable public asset in the pursuit of better care, improved health, and lower health care costs."

Dr. Rich Platt, Harvard Medical School's Department of Population Medicine and I co-presented on distributed data networks.  Our themes included:

• Distributed data queries can provide the foundation of a learning health system.
• Advantages of distributed data networks include data accuracy, timeliness, flexibility, and sustainability.
• Distributed queries facilitate asking questions of large datasets in ways that are HIPAA-compliant and maintain local context.

2014 Standards & Certification Criteria - Final Rule

Presentation by Steve Posnack to the HIT Standards Committee - September 19, 2012

Posnack scc 2014edition_hitsc_091912 from Rich Elmore

Towards a Learning Health System

This article was originally published on It Takes a Community, the Allscripts blog

This past year, I took a leave of absence from Allscripts to serve as the Office of the National Coordinator for Health IT (ONC) coordinator for Query Health, an Open Government Initiative that is establishing standards, policies and services for distributed population queries of clinical records.  It comes at a unique moment in time – at the confluence of broad deployment of Electronic Health Records, the compelling need for standards for secondary use of that healthcare information, and a Stage 3 Meaningful Use strategy that focuses on a “learning health system.”  That is, a system in which the vast array of health data can be  aggregated, analyzed, and leveraged using real-time algorithms and functions.  

I’m thrilled to be back and sharing what I learned about what we can do to implement a learning health system that benefits patients on a national scale.

Our work began in August 2011 in Washington D.C., with a “Summer Concert Series” environmental scan of the best work on distributed queries happening around the country.   I collaborated with some of the top folks in the industry from the more than 100 member organizations. It was energizing to be engaged with colleagues so deeply committed and passionate about improving health care.

My job was to lead the overall initiative representing ONC.  Clinical, operations and technical workgroups, each with around 40 members, delivered the functional and operational requirements, the technical approach, the proposed standards and reference implementations.    We actively engaged with the National Coordinator, the HIT Standards Committee, the HIT Policy Committee and the Privacy and Security Tiger team to ensure that Query Health aligned with broad national priorities and strategies.

Understanding Population Health

Distributed population queries can be applied to a variety of secondary uses.  Distributed population queries enable an understanding of population measures of health, performance, disease and quality, while respecting patient privacy, to improve patient and population health and reduce costs.

Distributed population queries are a central component of ONC’s strategy for a learning health system.  These queries “send questions to the data” and return aggregate population measures that keep patient-level information protected at the source.

We use distributed population queries today for a variety of purposes.  For example, public health tracks diseases, including flu-like illness, and evaluates optimization of scarce resources.  The FDA evaluates signals related to drug safety once drugs are released to the market.  Researchers compare the relative effectiveness of drugs and treatments.

Putting It into Practice

There are five Query Health pilots kicking off this Summer and Fall. 

1. The New York City and State public health departments are sending questions to both provider practices and RHIOs related to diabetes and hypertension.
2. The Food and Drug Administration is sending questions to a clinical data source at Beth Israel Deaconess Medical Center to evaluate which post-market drug surveillance questions can be supported by clinical data. 
3. The Massachusetts Department of Public Health is sending diabetes-related questions to community health centers and provider practices. 
4. The Centers for Disease Control is applying Query Health standards to its BioSense 2 cloud-based distributed data repository for situation awareness and disease syndromes. 
5. Allscripts is testing the applicability of Query Health to dynamically query for clinical quality measures. 

Query Health standards are being prepared for standards ballot by HL7 and ONC’s Office of Science and Technology.  The standard for Queries is based on an improved, more parsimonious version of the Health Quality Measure Format or HQMF.  The standard for Results is the Quality Reporting Document Architecture or QRDA (Categories 2 & 3).  The target data is aligned with the S&I Framework Clinical Element Data Dictionary, the National Quality Forum’s Quality Data Model and the HL7 Consolidated CDA. 

You can find more information about the project at QueryHealth.org. 

What’s your take on how the Query Health initiative can improve how we use health IT for the benefit of patient and patient populations? Do you have new ideas we haven’t yet considered? Share your thoughts below.

Standards Applicability - 2014 Edition

From http://www.nationalehealth.org/FinalRules

Meaningful Use Stage 2 and 2014 Edition - Resources

ONC Final Rule

• Read the ONC Final Rule [PDF - 1.3 MB]
• ONC Fact Sheet: 2014 Edition Standards & Certification Criteria (S&CC) Final Rule [PDF - 1 MB]
• HHS Press Release

ONC Resources

• 2014 Edition EHR Certification Criteria Required to Satisfy the Base EHR Definition [PDF - 1 MB]
• Equivalency Table [PDF - 1 MB]
• Do you have EHR Technology that meets the new Certified EHR Technology definition for Meaningful Use Stage 1? [PPTX - 267 KB]
• Do you have EHR Technology that meets the new Certified EHR Technology definition for Meaningful Use Stage 2? [PPTX - 266 KB]
• 2014 Edition EHR Certification Criteria Mapped to the 2014 CEHRT Definition for EPs Seeking to Achieve MU Stage 1 in and after CY 2014 [PPTX - 65 KB]
• 2014 Edition EHR Certification Criteria Required to Satisfy the Complete EHR Definition [PDF - 1 MB]

CMS Final Rule

• Read the CMS Final Rule [PDF - 1.8 MB]
• CMS Fact Sheet
• CMS Press Release

Patient Centered Outcomes Research Institute (PCORI) Data Workshop

Series of outstanding presentations from PCORI's electronic data workshop.

 

Query Health at the HITPC / HITSC Clinical Quality Hearing

From testimony at the Health IT Policy Committee and Health IT Standards Committee Clinical Quality Hearing, June 7, 2012.

Query Health is working to establish standards to "send questions to the data" while keeping patient level information safe at the data source. Distributed query networks are using these standards in pilots for insights on diabetes and hypertension, national and regional situation awareness, post-market surveillance and dynamic querying for quality measures.

How can the measure development process be improved?

The policy and standards committees have the opportunity to introduce strategic changes that result in agile, responsive, clinically relevant measures in Stage 3.

The clinical quality measure development process today is slow and unresponsive to the rapidly evolving state of medicine in this country.  Measures may take one to two years to define, and once defined, measures then take several more years to move through the regulatory cycle, be incorporated into EHR systems, be deployed to providers and then finally implemented for reporting.

Quality measures, even in their latest most formal expression using the Health Quality Measure Format (HQMF), are impossible for a system to digest “automagically”, as HQMF is verbose and not fully computable, with aspects of the measure even described in text.  Ambiguity in measure specification leads to multiple interpretations by providers and thus variability, which then requires rework during implementation of the measure in the field.

EHR developers who work with quality measures have described the need for greater clarity and specificity on the supporting data requirements up front, and validation that required data elements can be effectively collected in the provider workflow.

Measure development can also be improved by focusing on a common set of building blocks which could be used to create simple computable queries, which could in turn serve as the foundation for more complex queries. This will also help us to mature the queries without having to re-implement and redefine every concept as part of each individual complex query.

How can measures better leverage electronic health record capabilities?

In collaboration with HL7, NQF and CMS, Query Health standards will enable Health IT vendors to dynamically respond to queries, including queries that align with quality measures.  So assuming the data is being captured, the quality measure cycle time could go from years to truly a matter of days. The ability to generate measures nationally in a short cycle time has powerful benefits for patients and patient populations while enabling researchers and healthcare organizations to substantially reduce costs and increase speed.

Blackford talked about the importance of having an externalized set of target data that could deal with the curly braces problem.  Query Health standards do just that in a manner that is aligned with the Quality Data Model and Consolidated CDA.  Query Health standards provide a road map to better leverage EHR capabilities for dynamic querying of the EHR for quality measures.  The standards include the questions (a “new”  more parsimonious HQMF), the target data (ONC’s Clinical Element Data Dictionary or CEDD), the results (QRDA Categories 2 & 3) and the Query Envelope.  

A Query Health pilot being conducted by Allscripts will evaluate Query Health standards and target data to deliver sample quality measures.

How can the measurement infrastructure and data be leveraged for other types of improvement?

Quality measures are an important class of aggregate measures that can be immensely valuable. Clinical quality measure queries, with the Query Health standards applied, align with the Stage 3 goals for improved outcomes and establishing a learning health system through rapid feedback mechanisms.

Pooled “big data” in healthcare has its benefits but also has several drawbacks. “Big data” is typically managed in large pooled data sets, combining data from many settings of care. While there are terrific applications for pooled data, including registries and other successful use of large research and commercial databases, there are also critical issues of policy and strategy that must be resolved.  Query Health standards can serve as the safe on-ramp to “big data”.

Ultimately, we're at a defining moment for standards that will enable quality measures and big data analytics in a distributed environment. Researchers will be able to leverage these standards to “send questions to the data.” Questions can be sent to numerous data sources including EHRs, HIEs, PHRs, payers’ clinical record or any other clinical record.  Aggregate responses leave patient level information secure behind the data source’s firewall. Those responses can support questions related to disease outbreak, quality, research, post-market surveillance, performance, utilization, public health, prevention, resource optimization and many others.  The opportunities are truly endless.  Thank you.

Query Health - by the numbers

I'm finishing up a year with the Office of the National Coordinator for Health IT.  Thought you'd be interested in this blog post, summing up the work on Query Health.

Query Health – by the numbers

From Rich Elmore, Coordinator, Query Health

I wanted to share with you an update on Query Health - - by the numbers.

One	Transformative concept	Sending questions to the data
Two	Operational documents	1)      Data use agreement 2)      Operational guidance
Three	Reference Implementations	1)      i2b2 2)      PopMedNet 3)      hQuery
Four	Standards	1)      Question (HQMF) 2)      Data (CEDD) 3)      Results (QRDA Cat 2&3) 4)      Query Envelope
Five	Pilots	1)      NYC/NYS DPH 2)      Mini-Sentinel (FDA/BID) 3)      CDC BioSense 2 4)      Mass DPH 5)      CQM (Allscripts)

The Query Health technical work group is making fantastic progress on the reference implementations.  We’ve also had recent exciting news with ONC and HL7 working jointly on preparing HQMF and QRDA for ballot, and ONC and NQF working jointly on aligning CEDD with QDM. 

The Query Health pilots are poised to ask and answer important questions related to diabetes, hypertension, post-market surveillance, situation awareness and clinical quality measures.

Most importantly, Query Health aligns with the concept of a learning health system, focusing on improving patient and population outcomes.

All of this is the result of the energized, expert, engaged community that have provided shape and direction for distributed population queries.  Thank you to all of the Query Health members and support team for your outstanding contributions! 

The time I had promised to ONC has gone by so quickly.  I am thrilled that Feik (John Feikema) is taking the reins.  We’ve been working together on the transition for the past month and the project will not miss a beat. 

Onward!

Rich

Todd Park, Chief Technology Officer for the U.S.

Todd Park recently assumed the role of Chief Technology Officer (CTO) for the United States reporting to the President. Last April, Todd (then CTO of Health and Human Services), Josh Seidman and I participated on a panel moderated by Sean Nolan on Citizen-Centric Health: How Public/Private Partnerships are Changing the Game. Todd's energy and passion on that panel were so great, that it is worthwhile reprising here.