Disparities Action Group Meeting 1 Discussion Board
Meeting 1 Notes
October 24, 2005
Welcome to Disparities Data Action Group!

[NOTE: Comments listed here are based on notes taken during the meeting and may not accurately capture or summarize comments made by participants. Corrections and clarifications are welcomed and should be emailed to Connie Satzler, csatzler@kansas.net.]

Members Present: Sharon Goolsby, Sandy Griffith, Henri Menager, Paula Marmet, Karry Moore, Ghazala Perveen, John Rule, Lou Saadi, Connie Satzler, Elaine Schwartz Brandon Skidmore

* Paula provided overview of HK2010 process to date. *
Steering Committee is looking to take action. Anticipate that each of 3 action groups...steering committee is looking for (1) a policy agenda and (2) program initiatives.

* Connie gave update of disparities data in HK2010 process.

* Dr. Saadi gave update of state disparities data.
- New standard birth certificate implemented in 2005.
- Vital statistics data set with births, deaths, marriages, divorces, abortions.
- Have information at beginning and end of life...missing some of data in between, so also implemented...
- Hospital discharge data from KHA. Public health data set. Since 2003, started to collect race/ethnicity with 5 categories + Hispanic.
- Need to acquire information from specialty hospitals. We do get some data from them, but think it is still White, Black, and Other.
- Other information that we collect includes health professional data. Incorporated two significant pieces of information. (1) Race/ethnicity (minimum) (2) also asked a question about primary language. 8 licensure boards and 60 professions, though not all have incorporated race/ethnicity.
- Largest database we work with - insurance claims database that was developed by insurance commissioner. Claims data from top 20 insurers in state. Think this is only White, Black, and Other for this set. Claims data processing piece -bigger hurdle.
- Medicaid has gone to collecting 5 + 1 (OMB minimum). They are improving their data collection, but we haven't seen it yet to see how well it is populating.
- Those are the largest data sets.
- KIC. Took Missouri Information for Community Assessment system and cloned in Kansas. Includes vital, pregnancy, health professional, cancer data, hospital discharge, infectious disease, population estimates
- KIC gets about 30,000 hits per month.
- If they want something more complex, they can call us (rather than pull from KIC).
- Talking about expanding KIC to include BRFSS data set.
- ‘05 doing more work on improving because doing new certificate.
- 67 different combinations of race/ethnicity.
- Trying to decide how to manage racial combinations.

* Dr. Saadi reviewed birth certificate changes.
Specifically, pointed out primary language, Hispanic origin, parent's race, ancestry (kept), principal source of payment for delivery, mother's medical record.
- There’s an educational process to getting complete information filled in on the birth certificates to this. Many places depend on this information.
- Public only gets information on the front page for birth certificate requests.
- No follow-back to any patients or professional using information on this record.
- Death - cause of death, multiple cause of death coding information.
- Marriage, divorce, and abortion.

Hospital discharge data
Dr. Saadi provided basic tabulation.
Seeing fewer no responses from FY2003 to FY2004.
Can tabulate by kinds of conditions.
Would like to see us start doing ambulatory sensitive conditions.

What other data sets populate with birth certificate data?
Hearing screening, newborn screening, metabolic screening

Reviewed data resources, related to Action Step 1.

Henri: Data costs money. If we need information about minority groups, somebody has to pay for it. Everyone who is working or has data, they need to make a commitment to have data available. Need to assign resources to that.

Are there limitations on what Office of Health Promotion can release related to cancer registry data? Yes, some. Live set at KU.

Henri: Need to put our focus in two places. (1) How can we, with limited resources we have, increase availability to public? (2) How can we get more data available to public?

Brandon: Is it that we need to collect more, or do we need to find out/know why we can't make it available?

Henri: Issue is not only with current instruments/tools, we need to double-up - new tools, new ways to collect data in minority communities. Tools we have now...if we put 5 years BRFSS data together, you lose trend. Planning behaviors survey for cancer. We have a few contacts within minority communities. To be able to increase participation, decided to go with mail-in survey, they can help build sampling frame. Need to be open to this instead of sticking with same tools.

Henri: Advocate priority of trying to collect good data and comparative data on minority communities.

Brandon: Where do we stand on that, with other agencies?

Henri: Need to do some work. Trying to define those races, this information, so everyone will collect the same way.

A few OMB 15 exceptions with KDHE.
Henri: There is a way around this. Can collect everything you want, and then collapse.

Henri: Encourage the other end of the data. Having systems that reside in those communities. Encourage communities to use those data sets instead of communities coming to us. Communities have access to the data. We [state] pull together. Best situation for minority community, if data was also collected at the community level.
Local hospitals - see why local hospitals wouldn't be collecting behavior and quality of care data.
Who will fund this?
Should not ignore this possibility.

Paula: Hospitals currently collect data at the local level…what do you mean?

Henri: Share data back to local level. This is kind of problem getting in communities. Same kind of service they give to patients. Difference would be this information would be consumed back in the community. For example, one community - they were regularly sharing data back to community. This is an avenue we need to explore if we cannot get current tools to provide.

Paula: Initiating use of data at local level, rather than sending upstream.

Henri: Not only use, but partnership between local and state level. What is not there is consumption of health data at the local level. If there was more consumption of data at the local level, policy would be improved tremendously.

Brandon: What are the demographic categories for routine data collection that we would like to see? Then, what policies would we like to see?

Jean's suggestion: Look at Minnesota cultural competency and disparities data collection. There are 14 different categories.

Along those lines, what would be encouraged for collection, what would be mandated? What can be mandated? If it's encouraged, how long would it take to do that?

Ghazala: Even if we mandate...sometimes cannot be done, so exemptions are being talked about. Suppose technically it is resource intensive.

Brandon: Seems to be no time frame on an exemption. When does it expire?

Paula: Issue is, you can collect anything you want, as long as you comply with OMB and collapse.

Brandon: Youth Tobacco Survey example. It wasn't compliant with OMB 15 for a while.

Paula: Do we figure out how to do on our own, put resources and time in...?

Henri: The sooner we make the decision, the better.

Paula: As we look at 10 leading indicators, overweight and obesity. Knowing that overweight and obesity is a lifetime issue...we don't have a way to routinely collect height and weight data. In one group, came up - add height and weight to immunization registry. At school age entry, at certain points in age, would be a requirement to add and collect. By 9th grade, have Youth Tobacco Survey, then have BRFSS for adults...doesn't answer local prevalence.

Brandon: Some states have this as part of immunization registry. Hawaii, for example. They take 2 point-in-time span shots.

Ghazala: Immunization registry, to school age entry. Same thing for weight and height.

Karry: Would be valuable to communities.

Paula: Available at county level.

Sharon: Think it’s important to have baseline height and weight. If I went to access that data, what if I want to get it specific by school district, how would I get this?

Paula: Add school district to immunization registry?

Sharon: Yes, important, seeing trends, youth, lack of physical activity

Paula & Ghazala: Discussed risk factors.

Henri: Something that can be done at the community level. Try the best we can to get this done at state level.

Ghazala: We have those operational definitions, OMB 15 - everyone is using. On the other hand, inclusion of height and weight in immunization and school entry, this is also very important...

Henri: Too costly to do both?

Brandon: Seems we would do a disservice if we didn't do both...

John: How do we get the state to appreciate the importance of this? Are you trying to do internal? Or, are you trying to get to policy makers? Could look at data differently, add on... How long would it be before you have something to show someone?

Paula: They want to look at the big picture long-term. They want to make a difference now.
Specific examples: Hispanic data on KIC, how completely/accurately tobacco questions on birth certificates are filled out.

Henri: Policies are there, enforcement issue.

Ghazala: Tobacco on birth - if comes from prenatal, providers should be pushed to record accurately. If relying on medical record vs. self-reported, this information should be complete.

Brandon: Better monitoring, enforcing filling out birth certificate.

Ghazala: Some research has to be done to come up with standard definitions, etc. Dedicated group of people to work on disparities... OMB 15 should be looked into - into detail. Group should be formed by Steering Committee. Target time frame. Detailed report on how OMB 15 policies can be put forth. At the same time, there are a few quick things that can be implemented, like putting Hispanic ethnicity on KIC or tobacco on birth certificate (Maternal and Child Health policy going this direction). Further explore height and weight. Not talking about creating whole new data system, but putting fields on immunization, linking with school entry system.

Henri: Major policy - encourage people to use data. At local level...many problems should be solved at the local level...communities need to be involved. They will be able to do this effectively if they have good data. As part of general direction of policy, have data dissemination, training.

Henri & John: Training good first step.

John: Or identifying who is already using data well at the local level, or sharing between county agencies - e.g., local health department and geographic information systems at county level.

Sharon: Think training at local level is an excellent idea, especially among racial/ethnic minorities.

John: Data resource library. Like a laundry list of all the data sources you could go to. Uncovering what is already available.

Brandon: Run into at the local level, they don't understand what goes into collecting that. Disconnect between collecting and using. Small number issues.

Paula: Summarize ideas that have surfaced, send out to group in preparation for next meeting. Then be more specific about what we want to move on to Steering Committee. Think about - how would that help our ability to measure ten leading health indicators? Email anything else.

November 30th as possible date for next meeting?

Meeting 1 Discussion Board is now closed. Please add additional comments to the General Discussion Board.
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