#cdphopendata

The California Newborn Screening Program began in 1966 and screens for 80 disorders affecting about one in 600 births. Disorders screened for in newborns have varying degrees of severity, but if identified early, most conditions can be treated before they cause serious health problems.

How Are Babies Tested?  Prior to leaving the hospital, a few drops of blood from the newborn's heel are collected on filter paper for testing. Testing of over 17 million California newborns has established this as a simple and safe test. 

How Can Parents Get the Results?  Parents can get the written test results from the baby's doctor or clinic in about  two weeks. If the baby needs more tests, parents will get a letter or a phone call a few days after discharge from the hospital.

What Happens When a Baby has an Initial Positive Test?  Positive test results are immediately telephoned to a follow-up coordinator at one of the Newborn Screening Area Service Centers throughout the State. The coordinator contacts the newborn's physician to arrange for repeat testing. If repeat testing determines that the baby has a disorder, the coordinator provides the latest clinical information on the diagnosis and treatment and assists with referrals to special care clinics.

How much does the test cost?  Currently, the cost of the test is $112.70. Medi-Cal, health plans and most health insurance policies pay for the test.

Newborn Screened Disorders California 2009-2013 data lists the heritable/genetic disorders diagnosed through the California Newborn Screening Program from 2009 through 2013. The most common disorders detected by the program over the past five years were:

   Primary congenital hypothyroidism – 46% of all NBS disorders diagnosed.

   Sickle Cell Disease– 15% of all NBS disorders diagnosed.

   Cystic Fibrosis – 12% of all NBS disorders diagnosed.

An article by Abhi Nemani, technological optimist and political philosophy nerd. writer, speaker, maker. fmr @google, @codeforamerica. abhinemani.com

Health and Human Services may be the (or one of the) most important agencies to engage with open data. Public health departments, in particular, analyze and understand threats to the public’s wellbeing— a vitally important civic function. Your local Department of Public Health, for instance, strives to keep you up-to-date of your risk of contagious disease, the emergence of environmental hazards, and the likelihood of contracting food borne illness. Those are just few examples of the wide array of measures and indicators they watch vigilantly. Through a vast network of agencies ranging from state and county public health departments to the federal CDC and HHS, public health officials now have access to more data and tools than ever to accurately monitor and assess threats to the general public.

But that’s just the start. After you understand an issue, you have to do something about it. For that, they need to have effective mechanisms to engage the public. Indeed, public health departments actively reach out to the public through various means including newspaper inserts, physical ads, etc. New mediums including email, social media, and other digital interfaces are helping dramatically widen that reach.

In many ways, these agencies have always been in the open data business, just through older means, but by going open and online, they can become more connected and innovative.

Central, however, to a public health department’s operations for any outreach function in the 21st century should be open data. As has has been seen time and time again, open data itself acts as an information delivery mechanism, just be having it online, and when integrated into apps, existing services, or new ones, they take what’s too often cooped up in a government server and deliver it into the palm of your hand. Just consider how San Francisco opened up its restaurant inspection scores to integrate them into the widely popular consumer platform, Yelp. Indeed, this role of the public health agency as a communicator means that open data can be a game-changer.

To advance an open data agenda with a health-oriented institution comes with it serious concerns around privacy, integrity, and access — real challenges, but solvable ones with care and leadership. That’s why I was pleased to see that recently, with the support of the California Healthcare Foundation, the California Department of Public Health launched its open data portal:

“The California Department of Public Health today launched its

Open Data Portal

, which will allow user-friendly access to the data it collects about important public health issues. This data can be used to craft solutions to public health concerns while providing more transparency in government…

This — to my knowledge—is the first state-level open data portal in California. The Golden State boasts many of the most active open governments (Los Angeles, Palo Alto, Oakland, just to name a few) and entrepreneurs abound in both private and public industries. Yet, this marks a watershed moment for the state government, as CADPH embarks on its open data journey. One can only hope that other agencies follow their lead, and learn from their example, as I’m sure governments across the country can and will. Why? Because CADPH‘s open data rollout, by most accounts, breaks fresh ground in terms of design and launch.

Indeed, this role of the public health agency as a

communicator means that open data can be a game-changer.

Design

The CADPH site seems to strike a balance, with a richly graphical user interface. The homepage includes data, stories, visualized metrics, and developer information, with clear navigation right at the start. (Diving in deeper, you will see that this homepage sits a front a typical Socrata open data portal with typical rows of sortable, searchable datasets — wrapped in a slightly cleaner design.)

What this homepage design tacitly does is segment the user base into personas: say, subject matter experts seeking data; citizens or journalists exploring stories; and developers eager for APIs and design references. Consider the value this kind of structure could have for analytics and user understanding: if properly instrumented, this site could tell the government (and any interested citizens) what kinds of users are coming to the site, where they are coming from, and how valuable they are finding it. This is vital data as you consider and design calls-to-action for these high value demographics.

None of this is groundbreaking on its own; yet, together, they do give us a new opportunity to engage users and understand their use of open data.

The Process: Design & Launch

http://vimeo.com/102955602

How did they come to this savvy design? Through community engagement. The CADPH worked hand-in-hand with state officials and members of the local civic hacking community (Code for Sacramento) to hammer out an innovative design. (See the video above for more.) In a collaborative event, the group printed out screenshots of a number of data portals from around the world, tearing them up into their constitutive parts, and then piece them back together with their favorite elements: a data portal reconstruction.

This illustrates one of the benefits to later entrants into the open data space; instead of having to start from scratch, they can weave together the best elements of previous efforts into what’s just right for them. It’s a kind of patchwork innovation.

The Role of Open Data

Reading through CADPH’s announcement one sentence stood out:

While much of this data is currently available on the CDPH website, the Open Data Portal will improve access, so researchers, policy makers, technology experts and others can, for example, use the data to create mobile applications (apps) to solve local challenges.

This sentence reminded me of the obvious relationship between city websites that have been around for years and these new data portals that have only come onto the scene (sometimes in just the past few months). It’s a reminder that in a certain way, open data is not anything new. For older stalwarts of the transparency movement, they’ll know what I mean. Decades ago the civic hacking movement began with “scraping” government websites for data, and pushing them into old school data portals: hosted FTP servers, and the like. That’s a very different world than the one we live in now. With the advent of government-sponsored data portals, the appointment of Chief Data Officers, etc, it’s clear we’ve come a long way. The world of civic data is very different now.

But the fundamentals remain: Government has always been in the communications business. Before it was websites and even handouts, now it’s open data portals and APIs. Better access to government data means that that information is more democratized. Paired with the democratization of technology — the ease with which a research can take open data and run an analysis, the speed with this a developer and port over their existing tool to a new location—we start to see this role of government as a communicator turn into one as a collaborator.

Data then becomes less of a one-way dissemination tool, and more of a connective tissue for many-to-many collaboration.

Data then becomes less of a one-way dissemination tool, and more of a connective tissue for many-to-many collaboration. With the various institutions working towards better health outcomes — public health agencies, hospitals, nonprofits, startups, etc — now more than ever coordination is needed, and open data, along with open dialogue, can make that happen. Consider the opportunities for alignment: the agency could make simple updates to refresh the data catalog; that data could be pushed to citizens directly via, say, a startup developed app; new citizen behavior could be mapped by an NGO; and the overall health outcomes could be tracked and reported by the hospitals, feeding back in then into the data portal. Then repeat. The cycle continues. The sequencing will surely vary, but the similar, positive outcomes should not: improving public health by helping people dedicated to a cause do their jobs better and faster.

This cycle, however, would not be possible with the older systems for “open” data — getting the data would be too complex, using it too time-consuming. But that legacy is one we can build upon: since whatever information is already being put out there for the public through older channels is just that, public, these agencies have fewer hurdles to clear when building an open data program.

For such a program, a data platform is just the start. As we’ve seen time and time again, the truism, “If you build it, they will come,” just does not hold true. Open data has to be backed up by community management, developer relations, and constant vigilance to ensure data quality and relevancy.

Birth weight is one of a group of measures used by public health professionals and community planners to identify areas within California with less than optimal mother-child health status.  This group of indicators is referred to as California Birth Profiles, and also includes race/ethnic group of the mother, age of the mother, and the pregnancy trimester in which prenatal care was provided.   The information is organized by ZIP code of the mother’s residence at the time of delivery.

This ZIP code level data can show areas with higher numbers of teen births, lower birth weights, or late or no prenatal care, and help identify areas where public health assistance and educational programs might be targeted.

In this map of birth weights, the ZIP codes are displayed by graduated colors, showing the live births in California that were below 1500g as a percentage of the total live births for each ZIP code. Darker colors indicate locations where there was a higher percentage of low birth weight live births.  The bar at the bottom of the map allows you to interactively display the birth weight by zip codes through time.  You can move the slide or push the arrows to see the birth weight data change from 1989 to 2012.

To play with this interactive map go to http://cdphdata.maps.arcgis.com/apps/OnePane/azuretime/index.html?appid=95cf0202d0ac4868ba07d5af1d4e20d1

To check out CDPH's birth data go to health.data.ca.gov 

Poverty is an important social determinant of health (see http://www.healthypeople.gov/2020/topicsobjectives2020/overview.aspx?topicid=39) .It can impact people’s access to basic necessities like housing and food. It is associated with higher incidence and prevalence of illness, and with reduced access to quality health care.  Poverty is not equally distributed throughout the state and some racial/ethnic groups are more likely to experience poverty. As a result, who we are and where we live matter for our health.  Public health efforts can impact the social determinants of health.Providing data on the determinants is a first step. 

The poverty rate table at the CDPH Open Data portal contains U.S. Census data on the percentage of the total population and children living below the poverty level for California, its regions, counties, cities, towns, and Census tracts.  Additionally, the table contains a measure of concentrated poverty, which is the percentage of the poor living in Census tracts where 40 percent of the population or higher, are poor. This measure can help us identify the most vulnerable places for action.The data in the table can be used to compare the poverty situation among jurisdictions, study changes over time, and aid in the identification of priority areas for public health interventions. 

To learn more about what communities and Public Health are doing to address the social determinants of health click here:  http://www.cdc.gov/nccdphp/dch/programs/healthycommunitiesprogram/tools/pdf/SDOH-workbook.pdf. 

To check out our Health Equity data go to health.data.ca.gov

To improve the health of Californians over their lifespans, Governor Jerry Brown established the Let’s Get Healthy California Task Force to develop a 10-year plan.  The task force identified asthma emergency department (ED) visits as one of the 39 indicators to track over time and measure progress being made.  

Why asthma ED visits? This asthma indicator represents people with severe asthma or poorly managed asthma, who visit an ED for their asthma, expressed as a rate per 10,000 California residents. Asthma ED events are serious ,, often preventable, and  costly. These data can be used to compare the rates of asthma ED visits by ZIP code. This information can inform public health practitioners and health care service providers in patient interventions, program planning and in targeting interventions.

What can't these data tell us? These data alone cannot tell us what neighborhoods within the ZIP code are at highest risk for asthma ED visits, the total burden of asthma in a ZIP code, nor does it tell us what causes asthma ED visits

Want to know what the asthma ED visit rate is in your neighborhood? Check out the 2012 asthma ED visits map, and zoom to your ZIP code to find out at health.data.ca.gov

To see our Asthma data go to health.data.ca.gov

Show your support to @CAPublicHealth in launching Open Data Portal by sending 1 selfie + 1 wish/idea/challenge to #CDPHOpenData 

The California Department of Public Health’s (CDPH) Division of Communicable Disease Control keeps a close eye on human infection with West Nile virus (WNV) and reports cases weekly to the CDC. Making these data freely available for public use on the CDPH Open Data Portal offers data users, civic developers, and health-minded California citizens an opportunity to lend a hand in promoting public health. We’re hoping to stimulate the creativity of the public-at-large in exploring a variety of efforts for what can be discovered if you combine our data with other available data in the public sphere. Here are just a few ideas to consider:

What time of year am I most likely to be at risk for WNV?

How does the ambient temperature affect my risk?

Does where I live make a difference?

Does WNV transmission risk vary from year to year?

Now, go to our CDPH Open Data Portal and help us #fightthebite!