|Disparities Action Group Meeting 2 Discussion Board|
|Welcome to Meeting 2 of the 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, firstname.lastname@example.org.]
Members present: Representative Delia Garcia, Barbara Gibson, Jean Hall (phone), Susan Kang, Kim Kimminau, Paula Marmet, Henri Menager, Karry Moore, Ghazala Perveen, Catima Potter, John Rule, Lou Saadi, Connie Satzler, Elaine Schwartz, Brandon Skidmore
Paula gave an overview of HK2010 process to date (see website for more detail).
Three workgroups presented priorities, recommendations to Steering Committee.
Steering Committee members selected those priorities most interested in working on. Action groups formed based on priorities with most interest.
Consider specific recommendations that fall into areas of program and policy.
Reference to Meeting 2 Handout of Meeting 1 Summary.
Types of recommendations can include…
1. What can we do that will require legislative action?
2. What can Steering Committee members do collectively that does not require leg action? What can they move forward with now?
Refer to recommendations drafted from last meeting. Be more specific.
Refer to recommendations from Meeting 1 summary.
I.A. (from meeting 1 summary) state programs use at a minimum OMB15 standards.
What is the definition of 'all state programs'?
Recommendations back to members of steering committee.
Broader than health only, KDHE only, among those who are not usual suspects. Promote among DOT, Dept of Admin, etc.
Henri: I agree. Disparities data - opportunity to collect additional data, not health related. When KDHE started to look at OMB15, fiscal implications of collecting. Keep fiscal in min.
Paula: If advocating OMB15 standards to be applied to KDOT, etc., what is the rational for improving the 10 LHI (leading health indictors)?
Henri: Numerator, denominator issues calculating rates. e.g., crashes come to mind. If want to stratify deaths from KDOT data, might have problems because denominator and numerator are not the same, definitions are not consistent.
Brandon: Department of Education another agency that is key tie in to make sure collecting the same information the same way.
Kim: National experience in implementing OMB 15 and more can inform what we're doing in KS. Other states have found biggest push backs come from cost, legality. Continued assumption that it’s not legal to ask people this information. (Has been dispelled, but comes up.) For each agency the story is different. Need persuasive argument. Really telling broader story of social determinants of health.
Paula: Okay, part of the issue is convincing. Is this a matter of just doing it, or are there other legislative matters that needs to be resolved before implementation?
Kim: Nothing that interferes with collection of data...legislative action could perhaps promote.
Henri: Funding links…voluntary unless receiving federal funds. Fiscal issue could help persuade arguments.
KDHE has adopted, Division has for Medicaid.
Representative Garcia: Are there other states that have adopted? Mandate?
Kim: Hawaii is close - across all state agencies. Go way past OMB. Alaska, maybe.
Paula: Any more we want to say to Steering Committee on this? May be some question to value we need to be ready to address. From federal grants perspective is important, because this is leverage used for funding.
Paula: On to I.B...
Jean: Looking at Minnesota (MN) website to see what is required. It is a Department of Human Services, says other agencies encouraged, looking to see if they have any kind of mandate.
Paula: What are objections?
Kim: Cost is used a lot, but generally not a good argument. Generally not enough of a priority to implement. Don't think anyone has done a good financial analysis.
Lou: Think that some of the problem is related to multi-racial, becomes more complex.
Henri: Database has to be restructured, forms have to be changed, etc.
Paula: Looking at MN guidelines...do we wish to add, develop our own?
Barb: MN - this all would be nice to know. What is 'need to know'? The more data elements we attempt to collect, the less complete we get. See a lot of objections to several of these.
Henri: If we try to get too much, we may not get anything. OMB 15 is minimum we should shoot for, the rest can come later. For now, think urgency is...what does race mean for us to document what is happening in disparities?
Lou: If disparities are broader than race/ethnicity...we need to collect broader.
Jean: Can we add for all and see what comes back? Or, see what people object to?
Kim: Priority framework...start with OMB15, then focus on...x by 2005, y by 2010, and z by 2015.
Henri: Would go for race/ethnicity + primary language first.
Jean: Politically, think governor's office would be very interested in health insurance.
What about income and number in the family?
Henri: Income & insurance are difficult to deal with...if add on first attempt, may have a lot of objections.
Brandon: Barrier...organizations might not want to change due to cost. Is it better to do all at once, or one piece at a time?
Kim: Depends on organization, depends on platform. Give them the entire menu.
Brandon: This is the entire set of changes, update as you can...can update with entire system change, or incrementally as they make updates to their IS.
Ghazala: Timeframe, agree to updates.
Elaine: HCFA 1500 claim forms...are you talking about encouraging state agencies to use? What forms? What documents?...so this is just a recommendation, it's not a requirement?
Henri: Yes, we would like to see an incentive...
Elaine: Recommendations to move towards this by 2010, 2015...
Kim: Health Care Data Governing Board (HCDGB) did adopt and support use of OMB15, but didn't want to make any stronger than recommendation. Kansas Health Policy Authority may be same approach.
Paula: Mandate or recommendation?
Asking Steering Committee to support.
Barb: Make a recommendation on prioritization on kinds of programs. May be more useful to programs than others.
Balancing act between resources and utility of information. Needs of research, etc. and service delivery. When does it become a barrier to the client? There are legitimate balances.
Henri: Haven't heard anyone object to OMB15. What's in it for me? Create incentives. Those disparities have real consequences on real people's lives. If anyone is interested in addressing disparities, need to document. May have design tools to address. Disparities are not well-documented.
In order to impact 10 LHI, have gaps to measuring where we are. Support for identifying...race, ethnicity, and primary language. Define definition for standard data elements as broader vs. narrower on stepwise scale in such a way that organization could implement stepwise or all at once, as well as discussion on what information could be most helpful for what programs (maybe not discuss at this time). What are the results of the studies that have been done about what data we collect?
Lou: May be surprised, may be better than we think. e.g., hospital discharge data.
Brandon: Of MN data, which ones lead to greatest disparity?
Jean: We don't know. Not a MN original document. They did not create, they pulled from Office of Minority Health. This is a federal list.
I.C. Ensure all data collected are reported & available...
For Kansas Information for Communities (KIC), planning to add Hispanic, where available. Once data is available, will have expanded beyond Black, White, Other. Looking to expand. Seeking funding to improve KIC. Remember numbers will be small, some cells will not show.
05 - will start with expanded. Can do Hispanic soon with current data.
Henri: At state level, tools we have to create...
Looking at I.C.1, for example, is this voluntary or mandate?
Barb, Henri, Ghazala: Discussion regarding reporting data already collected. Why? Incomplete? Poor data? First make sure everything is collected OR first report while noting limitations and number unknown. Reporting can help spur action.
Kim: There is a substantial difference between OMB-15 and what we need for reporting. OMB-15 5+1 (5 races + Hispanic) However, states have very different needs in understanding their populations. That one shoe doesn't fit all. Don't want to get us so focused on 5+1 that we forget encouragement of communities to collect what they need locally. At the same time we're trying to appreciate diversity, don't want to limit everyone to 5+1 only. Encourage local to understand their populations.
Ghazala: Important for cultural competency.
Henri: Can collect as much as you want, as long as can collapse to 5+1.
Barb: Add another point that needs to be supportive of community needs in data collection (under II).
Kim: Need to be careful with lists. (e.g., correction American Indian in C.2)
Elaine: What about multi-racial? List all?
Lou: Yes, list all that apply.
Move D up as sub-point of I.D.
Kim: Making points about race and about ethnicity. Want it collected. AND want it reported. Want collected and reported in all standard tools. There's a collection theme, and a reporting theme.
Important themes: (Collecting and reporting) AND (race and ethnicity)
Kim: How comfortable are we with being prescriptive? Year 1, this is what we do etc.
Representative Garcia: What is meant by 'improve reporting'?
Barb: Getting an answer to the question.
Henri: Getting the Hispanic community involved.
Elaine: E-coding...has this changed?
No, not required.
Lou: We have worked on this. Have worked with medical records coders. They explain that they include. Then, talk with Blue Cross, they say if it's put there, they bring it through. Have not been able to determine if it gets 'lopped' off when imported or what, exactly, happens. Have seen improvement, but not up to what we need.
Elaine: Should we mandate?
Yes, seems to be a good step...
Maybe not under this group.
Look at II broadly. Engage communities.
Kim: They're waiting to be engaged!
Representative Garcia: Include them at the table.
Kim: Needs to be very decentralized.
Barb: Table needs to be THEIR table, not KDHE's table. Haven't developed long-term relationships to the degree that we could. Are there groups we should be involving, or is there a lack of organization in the community?
Representative Garcia: If have just 1 person, that could be a part.
Henri: Disparities at local level. Encourage those organizations to participate by giving them access to resources, training, to get onboard to solve disparities.
Kim: When doing training at community level, what was amazingly well-received? There is pent-up demand at community level for this.
Two components to engaging communities:
1. De-centralized approach
2. Training is huge piece that gains trust. Funding can come from outside sources to promote training.
3. Broader social marketing campaign. Engagement of communities in owning data, seeing importance of it, become partners in process.
Partnership and training at local level.
Henri: I agree, if looking at data, even if we have good data at state level, we know what's wrong. How are we at the state level going to solve problems at the community level? ...To be able to improve, must have data.
Susan: Government just announced collaborative...Kansas Collaborative Initiative. Locals collaborate with state - e.g., buying power - combining local & state - one example. Could fit into this.
Barb: Where can minority health office fit into all this?
Susan: Office of Minority Health 'officially' opens in January.
Barb: Should be some reference to this.
How to decentralize?
Kim: Partnerships locally
Susan & Elaine: Dovetail in with Collaborative - league of municipalities, Kansas Association of Counties, state - have cities, counties, state - network. Work with this network.
Paula: Partnerships, training, social marketing
Henri: Key is network. Strength of solutions depends on strength of network.
Brandon: Social marketing...initiating use of data at local level. If local entities aren't going to use data sets...not helpful.
Henri: If not using this data to impact health status at the community level...if grant monies linked to data. Small institutions, small groups become eligible for this. Money is biggest incentive...if we can finance these programs the same way we used to finance them may not be encouraging grass-roots participation. May not be interested in applying for grants because they think they don't have the capacity, not big enough, not able to meet the requirements that grants often use. Foster small, local institutions.
Barb: Similar to concern of making faith-based organizations feel more welcome to apply. By using faith-based organizations that have interest in certain ethnic groups, can move forward on solutions.
Henri: Make money available to empower communities...
John: Strategic decision making tool - set up priorities. Training could be set up to allow county-level decision makers to use this process. Train them how to use their own data. Instead of sending data upstream, can ... NACCHO?? City/county health officers.
Brandon: We tie in that they have to do x, y, z, collect certain data. Maybe do better job of identifying why this is important.
Recommendation III. Why here?
Don't have overweight/obesity data on any populations, let alone disparate populations.
Extension or example of result of disparate issues.
To pick out obesity...why this compared to cancer disparities? Compared to smoking/tobacco?
Looking at collecting at points in time along lifetime continuum.
Make broader than overweight/obesity?
Oral health, etc.
Have data in schools, don't have it where we can use it.
Engage schools, discuss with communities.
Brandon: Problem is we don't have home for data. We require them to collect immunization, hearing, vision, oral health.
They do it, but they can't pull it back out.
We need to educate them on why that's important.
Henri: Offer them opportunities to use data...
Brandon: We have coordinated school health, showing them how to take data, turn into program activities... have kind of burned our bridges in the past by requiring them to collect and not using. We need to do a better job of requiring them to share data.
Ghazala: We need to connect with the outcome.
Elaine: Make important to them.
Henri: Show data related to intervention.
Ghazala: Link school programs to communities. Data collection should be connected to initiatives to improve outcomes seen by that data.
Elaine: Parents, others, complain about duplicate data requests…
System to collect data at points in time, lifespan of Kansans. Overweight/obesity, or all.
(Youth Tobacco Survey, begins at 6th grade rather than 9th)
Feedback about weight may or may not be useful to parents.
Barb: Promote use and awareness of BMI...
Paula: This was focused on collecting data.
Kim: Include race/ethnicity in all data points...
Brandon: BMI still best source of overweight/obesity.
Barb: Collect data on DOB vs. age.
HIPAA concerns with MN's list.
Paula: We'll send out summary notes from today's meeting. Please comment critically on those and provide us feedback.
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