have data, will share

Publication with specifics on how to use data to study healthcare reform in California

Wed, 19 Sep 2012 14:41:00 -0400

Publication with specifics on how to use data to study healthcare reform in California

I'm watching a webinar: "How Will We Know if Health Care Reform is Working?"

Wed, 19 Sep 2012 14:39:31 -0400

This webinar is offering practical advice on using data to assess the impact of the Affordable Care Act on healthcare in California.

Really great webinar because it:

identifies available health data resources in California (i.e. OSHPD data sets),
describes what makes an ideal health data resource,
suggests specific questions that could be asked of the data to learn about the impact of healthcare reform in CA, and
gives examples of specific measures to use - knowing the measures tells a person how to manipulate the data to get answers to the questions

I felt all of it was really relevant.

This info sesh was sponsored by the California Health Care Foundation, produced by Dr. Carmen Nevarez from the Public Health Institute, and moderated by Karen Shore from the Center for Health Improvement. The State of California’s Office of Statewide Health Planning and Development (OSHPD) was very involved and gave three presentations. Impressive meeting of the minds =)

One thing I learned: There is an organization at the University of Minnesota which helps states understand and make use of their health data assets. It’s called shadac. Really cool stuff and their publications are accessible online at www.shadac.org

Today’s webinar slides are located at http://www.dialogue4health.org/webforums/9_19_12.html#presentations

Next topics for discussion

Wed, 18 Apr 2012 02:38:00 -0400

Before I forget:

- how to plan your EMS data system to meet your business needs
- why regional data standards are insufficient to meet hospital level data needs
- hospital data systems are our information lifelines… we must set them up for success
- first responders have the first opportunity to collect high-value information upon arrival to a 911 scene… we need their data!
- legal considerations for health data exchange

A helpful paper on Creative Commons licensing for public sector information

Thu, 22 Dec 2011 03:08:44 -0500

A helpful paper on Creative Commons licensing for public sector information:

Extremely insightful! Answered many of my questions and gave me ideas for developing an open data strategy. Written by Timothy Vollmer and Diane Peters.

how to help me open gov health data

Sun, 18 Dec 2011 17:04:10 -0500

It’s easy to find information about why we should make government data more open and readable. But it’s been a lot harder for me to find the how-to guide.

When it comes to researching “how to do things” online, I used to think of myself as pretty resourceful… but learning about how to open up gov data has been a challenge. And my program is especially difficult because the raw data I work with is personal to both patients and providers, which means it must first be rendered into a non-personal format before it can be shared.

Liability is the first thing most government people think about. This is especially true when personal health data is the topic. So I need a way to clearly explain open data and personal health data concepts to non-tech people. Here are some of the questions we’ve had:

How do we take personal health data and make it non-personal?
We have tons of personal health information that describes where and how people get sick/injured. This data could save lives. How can we make some of this information available without compromising privacy?
What kinds of policies do we need to make sure our department understands what and how to share?
Are there ever restrictions on using public data?
Is public data the same thing as public domain?
Do we need to publish any statements along with our public data to describe its intent and appropriate use, like private sector folks do with things like Creative Commons licensing?
How should we keep track of what we’ve shared and with whom?

These are questions that I can’t answer on my own. But if I don’t have an action plan for getting answers, there’s no way I’ll be able to convince my colleagues or local agencies to do more sharing. Many of us have some sort of access to attorneys, but this is often quite limited.

Then there are the nuts and bolts of actual sharing. To give you tech industry people an idea of how us common folk think about this stuff, here are some highlights from my own journey:

In the beginning, working with Excel pivot tables was a great way for someone like me (a computer lover with no programming background) to understand how computers count and sort data. This helps me set up my rows and columns in way that gives end users the most options for asking their questions and getting answers.
Google Fusion Tables provided a very hands-on way for me to experiment with the concept of joins. Because it only lets you do one join at a time, I got to play around with the process and view the results after each step. This also made me more mindful about setting up rows and columns in published data sets.
Tooling around on sites like GeoCommons showed me, in a very visual way, where metadata fits in to my workflow. It gave me clear examples of how to identify my data sources, describe any processing I applied, and basically take some reasonable steps to avoid looking like I stole someone’s work.

I know it’s a tall order and it’s not feasible to teach everyone how to manipulate data… but lots of us government folks need some guidelines.

I just discovered this resource wiki at Civic Commons, which is incredible: http://wiki.civiccommons.org/Open_Data_Guidelines. I haven’t seen anything nearly this helpful to date. If anyone knows of any similar “plain English” resources for health-specific data guidelines, please let me know!!

a little EMS history trivia

Fri, 09 Dec 2011 15:48:49 -0500

Validation and widespread adoption of CPR didn’t start until the 50s. The earliest prehospital medical care systems didn’t start until around 1970. Look how far we’ve come in EMS in such short time!

Here’s the best part: We’ve only had decent Internet since the 90s. From here on out, EMS system development is sure to snowballI. With so much data and insight at our fingertips (via the web), our industry may very well be facing a renaissance period. Exciting times!

"Our fears are like dragons guarding our most precious treasures."

Mon, 07 Nov 2011 12:25:48 -0500

“Our fears are like dragons guarding our most precious treasures.”

- Rainer Maria Rilke

"[Jobs said] ‘It’s not the consumers’ job to know what they want.’ In other..."

Thu, 06 Oct 2011 21:01:00 -0400

““[Jobs said] ‘It’s not the consumers’ job to know what they want.’ In other words, while Mr. Jobs tried to understand the problems that technology could solve for his buyer, he wasn’t going to rely on the buyer to demand specific solutions, just so he could avoid ever having to take a risk. This is what’s commonly known as leading.””

- - Matt Bai, nyti.ms/qzZlnS

some thoughts on data quality

Tue, 20 Sep 2011 15:20:00 -0400

I’m re-reading a chapter from the Kimball Group’s Data Warehouse Lifecycle Toolkit, Second Edition (Wiley, 2008). There are some fantastic thoughts here:

Michael Hammer, in his book, Reengineering the Corporation (Collins, revised 2003) struck to the heart of the data quality problem with a brilliant observation. Paraphrasing Hammer: “Seemingly small data quality issues are, in reality, important indications of broken business processes”

I think we all agree that health data quality begins at the point of care. If our data collectors in the trenches aren’t happy and empowered to collect great data, then we’ll never get good information out of our data systems. In the medical world, I think the broken business processes are the unfair expectations we often place on our clinical data collectors. Some examples:

Expecting collectors to understand and access multiple software programs with minimal training
Allowing software vendors to design training curricula with little to no oversight from business users
Expecting collectors to use Microsoft Excel to fill in gaps when software fails to deliver proper information

The good news is that I’ve never met someone in this profession who didn’t want to collect better data. In fact, many trauma registrars and ems data folks jump at any opportunity to learn how to do their jobs better. Tons and tons of passion. So in my usual tendency to exploit promising resources, I ask this question: How do we capitalize on all of this dedication and specialized talent? Some ideas:

1. Take the time to understand the data collection workflow.

Managers should do the data collection job for an hour once per month. Administrators should try it for an hour as well, at least quarterly.

2. Scrutinize the workflow and attack bottlenecks and high-risk quality issues.

Usually requires buy in from the higher-ups.

3. Challenge traditional data management strategies.

It’s not about the software we buy. It’s about the day-to-day operations that occur around the software. These are the activities of our business users, who in my case are government workers, local agency staff, clinicians, etc. We have to fight the myth that data system compliance can be purchased from a vendor.

4. Celebrate the good people who work in the trenches.

Also from the Kimball text:

… Technical attempts to address data quality will not prevail unless they are part of an overall quality culture that must come from the top of an organization.

Data collection is hard. Recognition goes a long way. Leaders in our industry such as such as the American College of Surgeons and National Trauma Data Bank, continue to champion the trauma registry profession as technical, highly specialized, and critical to improving trauma care. Their strong example will pay dividends to our trauma systems!

silo blaster

Mon, 19 Sep 2011 21:59:42 -0400

It feels really good to be a government worker today.

I didn’t realize how much public information was out there in the world until I started working for California. Why is it, though, that I can never seem to find this “public” information when I need it? I’m pretty nosy, so if I can’t dig into something then we have a problem.

So today we are blowing up a few data silos. I assembled a few tables of emergency medical services data (all of which is already considered public) and put it all in one place. Here’s a list of some cool things you can do with this stuff:

The table of California counties includes FIPS codes and polygons. FIPS codes can be used for linkage with US Census data, and polygons can be used to visualize county boundaries in Google Maps (or any other engine that supports KML).
The table of counties and LEMSAs can be used to visualize California’s local EMS agencies with Google Maps.
The table of California hospitals includes facilities which receive ambulance traffic in California. This table also includes each hospital’s identifiers for the California EMS Information System and various other systems held by the California Office of Statewide Health Planning and Development. (data linkage, anyone?!)
The CEMSIS Hospital List 2011 includes hospitals along with SOME local EMS agency designations**, such as trauma centers, pediatric specialty centers, STEMI centers, and stroke receiving centers. **This list does not contain enough information to help you choose a hospital in case of emergency, so please don’t use it for that! Always call 911 in an emergency.
If you survived that disclaimer, note the CEMSIS Hospital List is a great way to learn more about the key players in California’s Emergency Medical Services system.
If you’re researcher working with OSHPD data, you can use the CEMSIS Hospital List 2011 to identify specialty hospitals as defined by local EMS agencies.

Next on the list are ambulance companies, fire departments, and more key players who take good care of us when we need them most.

Happy data visualizing =)

PS The spreadsheets and Google Fusion Tables are here.

"You can’t improve what you can’t measure."

Mon, 19 Sep 2011 02:00:04 -0400

“You can’t improve what you can’t measure.”

- A good way to explain to someone why healthcare data matters. May also be helpful when talking to providers who refuse to be measured.

if you aren't a big computer person...

Tue, 06 Sep 2011 13:39:00 -0400

and want to learn more about what’s out there, here’s a list of techno things that make me more productive and happy:

Dropbox
Evernote
Twitter
lynda.com - If you ever take any advice from me, take this advice. Check out this site. It’s a game-changer.
Quora
Geocommons
TimeGlider

my list of data words

Tue, 06 Sep 2011 13:28:00 -0400

I’m constantly running into words and concepts that help me better understand the data world. I’ll try to keep track of them here.

data warehouse
business intelligence
semantic web
resource description framework
Schematron
metadata
master data management
ontology
ontology languages

Exit or Voice? How About Neither? | Code for America

Sat, 27 Aug 2011 00:48:15 -0400

Exit or Voice? How About Neither? | Code for America:

When I need some inspiration, I read this article. It reminds me to think outside the box and just “get things done.”

"Medical data management cannot be sold. It must be taught."

Fri, 19 Aug 2011 00:35:15 -0400

“Medical data management cannot be sold. It must be taught.”

- #justsayin

My first visit to Code for America offices in SF

Sun, 07 Aug 2011 18:17:48 -0400

So amazing. I knew it was going to be awesome and it was. The rush from being around such raw passion for making our world a better place is a lot like the Fourth of July without the annoying noise and terrified pets… which pretty much makes it the best feeling ever.

What I was especially excited about was the opportunity to be around computer and design folks. It’s been seven years since I finished college, and my majors were biology and social science. I didn’t get a huge amount of exposure to artistic or techno congregation in school, and what I did experience wasn’t quite as wired as it is today, so it was a treat to be around the two things are that such a big part of my career and personal passion nowadays.

First thing I noticed was there were power strips everwhere, and this made me feel so at home. I’m always searching for outlets at work and at meetings, and this convenience encouraged me to be my techno self. And then there were the healthy snacks and the full kitchen right in the middle of the office. My favorite homes are those which center around a big, family-sized kitchen, and this layout at CfA seemed like a metaphor to me for what they’re all about.

But the best part of all was the people. So creative, passionate, and humble. I took a lot in as I watched them engage with Twitter throughout the day, photo-blogging the events and ideas brewing at the Iconothon as they developed. We didn’t have Twitter 7 years ago, and I had read about this sort of thing in a book I recently bought (Boring Meetings Suck by John Petz). So it was fun to see them in action.

I can’t wait to see the end results from The Noun Project. This will be an important resource for public program people like me who need access to meaningful digital content but can’t afford professional web developers or designers.

Much love to all the fine folks from yesterday’s Iconothon!

Ideas I got from Code for America

Sun, 07 Aug 2011 17:44:00 -0400

The CfA fellows were generous with their time and ideas. I was only there for a few hours, but I think I walked away with a years’ worth of work to do.

I’m especially excited about the Civic Commons, a project which CfA fellow Michelle Koeth said will offer open source computer programs. These programs would help government agencies use technology to operate more efficiently and effectively. She also explained to me the benefit of using open source technology as it relates to getting better technical support, but I’ll have to ask her again because I was so excited about this that I forgot to take notes.

I told Michelle that I’ve always wanted to develop a trauma registry using Microsoft Access and make it freely available to anyone interested in starting an injured patient database. She said that Civic Commons would be a great place for such a program. All in all, it was a great day for this trauma registrar!

The CfA and Noun Project's SF Iconathon

Sun, 07 Aug 2011 17:07:00 -0400

Wow. I’m still reeling from what I took in yesterday. Amazingly inspirational doesn’t do enough to describe the experience.

Last week, I saw a message in my Twitter stream announcing a Saturday workshop in San Francisco. They called it an Iconathon. The objective was to design symbols for use by the City of San Francisco’s 311 Program, which serves as an electronic hub for its non-emergency public services. The symbols would become visual descriptors to help individuals quickly find help and official information on everything from how to report a broken parking meter to requirements for licensing a new pet.

This is important because city folks move quickly. If they have a moment to stop and report something that needs attention, it’s only a moment. It won’t be long before the phone will ring or a friend will show up, and the pothole they hit on the way home will become forgotten. A streamlined notification process would provide more meaningful feedback to the city and reduce public safety risks (here I go again with the injury prevention!), increase revenue potential (I paid $28.00 to a parking meter yesterday), and mitigate government liability (this is US after all, and I noted many law offices in SF).

The best part of Iconathon is that the symbols developed as a result of the project will become part of the public domain, which means anyone in the world can download the images and use them however they like. What a wonderful way to overcome communication barriers and encourage civic engagement around the world! So, whose great idea was this anyway?

Folks from The Noun Project led the way yesterday in facilitating thoughtful design and participation amongst coders, graphic designers, and civic-minded opinion-givers alike. I hear they’ll be headed next to major cities such as Los Angeles, Chicago, and New York to develop symbols for food and nutrition, democracy, and transportation. I liked how they presented each stage of an icon’s design with the group and shared the process of thoughts from one iteration to the next. It was a very honest form of teaching that is also reflected in their blog.

The event was most wonderfully hosted by the folks at Code for America. Their passion and energy was such a joy and would be better served by its own post. So awesome to have such innovation just a stone’s throw away from Sacramento!

"Service is love made visible."

Sat, 06 Aug 2011 04:42:55 -0400

“Service is love made visible.”

- Stephen Colbert

"A clock can tell you the time, but not what to do with it."

Fri, 29 Jul 2011 17:31:59 -0400

“A clock can tell you the time, but not what to do with it.”

- Discovered by Kayla, our intern at EMSA