WISEWOMAN Data Defining and Clarifying the MDEs

2. WISEWOMAN Data � Defining and Clarifying the MDEs Darryl Cooney, Statistician, SciMetrika Patty Ferry, CDC WISEWOMAN Program, Columbus Technologies & Services, DHDSP WISEWOMAN Contractor Diane Manheim, Project Officer, CDC WISEWOMAN Program Dianne May, Project Officer, CDC WISEWOMAN Program So O�Neil, Senior Researcher, Mathematica Policy Research, Inc. Isam Vaid, ORISE Fellow, DHDSP Chad Wigington, Data Analyst, Columbus Technologies & Services, DHDSP Epi & Surveillance Branch Contractor

3. Session Agenda Introduction to objectives of the session Data Quality Improvement Plan MDE Definitions Template Changes Discussion Sessions MDEs: Possible Changes Wrap-up and next steps

4. Objectives of the Session By the end of the session participants will be able to: Describe CDC�s plans for data quality improvement Describe parameters for changing or refining MDE questions or responses in the short term (until 2013)

5. Overview of data quality issues Missing data Data that cannot be used for analysis (excluded data) Data that may not be reporting the same thing (unclear definitions) Submission timeliness and completeness Data that cannot meaningfully be interpreted because of question quality or response options The CDC Data Quality Plan is being developed to address each aspect of the concerns related to data quality.

6. What CDC is doing to address data quality� Increasing program�s ability to identify missing and excluded data through the use of new on-line edits program Developing data quality performance measures to begin next program year to focus on: Eliminating missing data Reducing excluded data Assuring timely submission of quality and complete MDE data on or before due date

7. What is CDC doing? Improving the MDE manual. Improving data interpretation through improved MDE questions and response options. Improving timeliness of feedback reports. Adding more analysis of data to future reports.

8. Telling the WISEWOMAN Story The number of women reached (screening and LSI) Who these women are (demographics, risk profiles) Documenting positive changes in heart disease and stroke risk factors (decreasing heart disease and stroke risk factors) Building the capacity in communities to support healthy behaviors (sustaining program benefits) Lessons learned

9. Improving MDE Definitions Proposed Changes: New Table of Contents New format for data elements information Changes to some definitions Input from you At conference: Discussion Sessions Tues. 7�7:45 am & 3�4 pm Follow-up input from programs and data transition committee New Program Manual Released

10. MDE Revision Process The OMB approval will take approximately 8 weeks after fast track application is submitted. We will communicate changes to programs as soon as approved by OMB. Depending on the timeline, changes would be implemented beginning July 1, 2011.

11. Development of Proposed Changes All proposed changes are based on requests from programs and need for improved quality of data collected. CDC recognizes that some programs may have more challenges implementing changes than others. We want your feedback to help us identify challenges and determine feasibility.

12. Criteria for Consideration� Will the changes improve our ability to tell the WISEWOMAN story? Will the changes improve data accuracy and meaning? Do the changes align with NBCCEDP and other CDC program data needs? Criteria and prioritization of what we would focus onCriteria and prioritization of what we would focus on

13. What MDE adjustments are being considered?

14. Discussion Process We will go through each element under consideration We will give you the rationale We will tell you the possible proposed change We will ask you questions, to get your initial feedback for about 2-3 minutes per item. Cards are available on the tables to ask additional questions Feedback after the conference is planned

15. MDE: Race6 Rationale: NBCCEDP has removed this data element (6th race field) and we want to align with their data set Proposal: Remove 6th Race Field from MDE set Questions: Is the benefit of dropping this field greater than the effort to change data collection and reporting systems? In order to align with BCCP, which has removed this option, the 6th race field (which has no current valid option for response) would be removed. It is the 6th repeat of the same question. This is totally up to the programs as to whether reformatting is worth doing. We do not care. In order to align with BCCP, which has removed this option, the 6th race field (which has no current valid option for response) would be removed. It is the 6th repeat of the same question. This is totally up to the programs as to whether reformatting is worth doing. We do not care.

16. Assessment Date, Weight Date, BP Date Rationale: Weight Date and BP Date are redundant and assessment date (data of health history) is agrees with weight date 98% of the time. Proposal: We only need a screening visit date Change definition of assessment date to visit date and drop Weight and BP Date Fields Questions: What are the challenges, ramifications, and benefits of changing from 3 dates to one? Because date are the same most of the time, we don�t need all these dates. The screening date will allow us to drop date edits checks and more easily calculate rescreening period. Because date are the same most of the time, we don�t need all these dates. The screening date will allow us to drop date edits checks and more easily calculate rescreening period.

17. Units of Measurement Rationale: Neither weight in kilograms nor height in centimeters is being submitted. Proposal: Require only lbs and inches as measurement units Questions: Are there any reasons to keep metric measurement units? What will changing data collection and reporting systems involve?

18. Triglycerides & LDL Measures Rationale: Triglycerides and LDL are only gathered when a fasting blood draw is obtained. A clearer response option is needed to accommodate when a patient is not fasting Proposal: Add to the current responses 6666 � Patient not fasting Questions: Would this response help improve data quality? How would this change impact programs? Recommendation: 9999 means 2 things � data is missing and data should not have been collected because patient was not fasting. Add a response option for LDL and Triglycerides questions response option to clarify so that there is an option for �no measurement� i.e. missing(9999) and a separate response option for �patient not fasting� (6666) Additional potential recommendation: Not sure how �client refused� would make sense in this context (if fasting blood work is done, patient consent would not be needed for this specific test, and if patient refused to get blood work done, this would be no measurement taken) It may be appropriate to remove option. Programs could let us know if they thought it was worth recoding. 7777 Inadequate blood sample, 8888 client refused 9999 no measurement recorded Recommendation: 9999 means 2 things � data is missing and data should not have been collected because patient was not fasting. Add a response option for LDL and Triglycerides questions response option to clarify so that there is an option for �no measurement� i.e. missing(9999) and a separate response option for �patient not fasting� (6666) Additional potential recommendation: Not sure how �client refused� would make sense in this context (if fasting blood work is done, patient consent would not be needed for this specific test, and if patient refused to get blood work done, this would be no measurement taken) It may be appropriate to remove option. Programs could let us know if they thought it was worth recoding. 7777 Inadequate blood sample, 8888 client refused 9999 no measurement recorded

19. Health History of Diabetes Rationale: In the MDE, programs cannot distinguish between women who have a current diagnosis of diabetes and those who have been previously diagnosed with gestational diabetes only. Proposal: Add response option: Gestational (pregnancy) diabetes only Questions: Would this change be beneficial to your program? What are the data collection issues for programs? The purpose of this response change is to assure the diabetic history accurately reflects a current status of the woman as a diabetic. Current Status/Question :Have you ever been told by a doctor, nurse or other health professional that you had diabetes) 1 � Yes; 2 � No; 7 � Don�t know; 8 � Don�t want to answer; 9 - No answer recorded New response recommended 3 - Gestational (pregnancy) diabetes only; This clarification (Do not consider history of gestational diabetes a yes) has been communicated to the programs via e-mail but the health assessment is often filled out by the woman herself without oversight � so this instruction will only work if reviewed in conjunction with a medical professional which may not occur in all situations and may add burden for women who are not sure how to answer the question who have experienced this situation. The purpose of this response change is to assure the diabetic history accurately reflects a current status of the woman as a diabetic. Current Status/Question :Have you ever been told by a doctor, nurse or other health professional that you had diabetes) 1 � Yes; 2 � No; 7 � Don�t know; 8 � Don�t want to answer; 9 - No answer recorded New response recommended 3 - Gestational (pregnancy) diabetes only; This clarification (Do not consider history of gestational diabetes a yes) has been communicated to the programs via e-mail but the health assessment is often filled out by the woman herself without oversight � so this instruction will only work if reviewed in conjunction with a medical professional which may not occur in all situations and may add burden for women who are not sure how to answer the question who have experienced this situation.

20. Screening Information: Blood Glucose Rationale: ADA has recently recommended A1C be considered for screening diabetes. An MDE change would be needed to accommodate this option. Add a response option under glucose measurement - A1C taken for screening purposes.

21. Screening Information: Blood Glucose Rationale: An A1C is required for screening those with a previous diagnosis of diabetes. Some programs use A1C data from another provider and do not take this reading during the visit. When A1C results are from another provider a response option is needed. Proposal: Add a response option: Participant with diabetes had measurement taken by another medical provider. Questions: What are the benefits and draw backs of adding these new response categories? Current options are blood glucose reading (4 digits) or 6666 Participant has previously diagnosed diabetes (and WW will take A1C) 7777 Inadequate blood sample 8888 Client Refused 9999 No measurement taken 2 options to add: 3333 A1C taken for screening purposes 5555 Participant has previous diagnosis of diabetes � (A1C measurement was taken by current medical provider)Current options are blood glucose reading (4 digits) or 6666 Participant has previously diagnosed diabetes (and WW will take A1C) 7777 Inadequate blood sample 8888 Client Refused 9999 No measurement taken 2 options to add: 3333 A1C taken for screening purposes 5555 Participant has previous diagnosis of diabetes � (A1C measurement was taken by current medical provider)

22. Alert Work Up Status Rationale: Currently not possible to determine if information is available when a woman is already being treated by a medical provider. Proposal: Breakup �Workup not medically indicated - client being treated� into 2 options: Client is treated by another provider- Tx information is available Client is treated by another provider- Tx information is NOT available Questions: How would this change help clarify work-up status? What impacts might this have on your system?

23. Work-up Status Any change put in place would be duplicated for all three Alert Situations � Blood Pressure, Cholesterol and Glucose.

24. LSI MDE Changes: Contact Type Rationale: To allow programs to report referrals for resources outside of LSI sessions. This would allow programs to report referrals to quit lines or other community resources during a screening visit. Proposal: Add a response option: Referral Only � No LSI Session Question: How will adding this response option be helpful to the programs? Current response options are: face to face, phone, evidence of mailed, etc�.. How will programs collect info on referrals to PA and Nutrition from providers? How will expectations have to changeCurrent response options are: face to face, phone, evidence of mailed, etc�.. How will programs collect info on referrals to PA and Nutrition from providers? How will expectations have to change

25. Brain and Body Break�.

26. Tobacco Changes Under Consideration The following proposed changes are a result of program requests for more accurate and meaningful tobacco use and cessation information and CDC�s desire to use nationally validated questions that align with other CDC programs. We�re looking at and suggesting several changes to the MDEs around tobacco use and cessation services. The next several slides show these changes. We will be working with NBBCEDP to assure that tobacco questions to align expectations for questions as much as possible over time. We are proposing several changes that are a combination of responding to requests from programs and our wanting to be sure that accurate and meaningful assessment information is being collected about tobacco use to ensure our participants get the services they need related to this issue...or something like that. We�re looking at and suggesting several changes to the MDEs around tobacco use and cessation services. The next several slides show these changes. We will be working with NBBCEDP to assure that tobacco questions to align expectations for questions as much as possible over time. We are proposing several changes that are a combination of responding to requests from programs and our wanting to be sure that accurate and meaningful assessment information is being collected about tobacco use to ensure our participants get the services they need related to this issue...or something like that.

27. Tobacco Use Rationale: Changes would provide greater knowledge of smoking status and intent to quit. Standardized questions would allow for comparison with NATS data. Proposal: Replace current question with standardized questions related to: smoking prevalence intent to quit second hand exposure tobacco resource knowledge. Replace this question and responses with meaningful questions which respond to smoking prevalence, intent to quit and quit resource knowledge, have been tested and are part of ATS (and for some BRFSS also) Changes would provide greater knowledge of smoking status and intent to quit Standardized questions would allow for comparison with ATS & BRFSS data Replace this question and responses with meaningful questions which respond to smoking prevalence, intent to quit and quit resource knowledge, have been tested and are part of ATS (and for some BRFSS also) Changes would provide greater knowledge of smoking status and intent to quit Standardized questions would allow for comparison with ATS & BRFSS data

28. Tobacco Use: Health History1a Purpose: This question and the following question are asked together to ascertain smoking status Proposal: Have you smoked at least 100 cigarettes in your entire life? � 1 Yes 2 No 7 Don�t know/not sure 8 Refused Reliable and standard in pairsReliable and standard in pairs

29. Tobacco Use: Health History1b Purpose: This question and the previous question are asked together to ascertain smoking status Proposal: Do you now smoke cigarettes? 1 Every day 2 Some days 3 Not at all 7 Don�t know/not sure 8 Refused to answer This is the same as the current question � but is validated through having this questions as part of the pairThis is the same as the current question � but is validated through having this questions as part of the pair

30. Tobacco Use: Health History 2 Purpose: Determines if health professionals are advising to quit. Such counseling is most effective means to encourage smokers to quit. Proposal: In the past 12 months, did any doctor, dentist, nurse, or other health professional advise you to quit smoking cigarettes or using any other tobacco products? 1 Yes 2 No 7 Don�t know/not sure 8 Refused Add a history section (section 5)question which aligns to prevalence (above), but placed it in the correct section of the MDE survey with other questions related to personal history Add this question to section 5 questions in which all questions begin (have you ever been told by a doctor, nurse or other health professional �.. In the past 12 months, did any doctor, dentist, nurse, or other health professional advise you to quit smoking cigarettes or using any other tobacco products? Add a history section (section 5)question which aligns to prevalence (above), but placed it in the correct section of the MDE survey with other questions related to personal history Add this question to section 5 questions in which all questions begin (have you ever been told by a doctor, nurse or other health professional �.. In the past 12 months, did any doctor, dentist, nurse, or other health professional advise you to quit smoking cigarettes or using any other tobacco products?

31. Tobacco Use: Intent to Quit 1a Purpose: This question and the following question are asked together to ascertain readiness to quit smoking Proposal: Do you want to quit smoking cigarettes for good? 1 Yes 2 No 7 Don�t know/not sure 8 Refused to answer

32. Tobacco Use: Intent to Quit 1b Purpose: This question and the previous question are asked together to ascertain readiness to quit smoking Proposal: Do you have a time frame in mind for quitting? 1 Yes 2 No 7 Don�t know 8 Don�t want to answer This change would determine readiness to quit. Some quitlines require the smoker to set a quit date before enrolling them in telephone counseling. Questions related to knowledge of cessation resources are included with the proposed changes to LSI questions.This change would determine readiness to quit. Some quitlines require the smoker to set a quit date before enrolling them in telephone counseling. Questions related to knowledge of cessation resources are included with the proposed changes to LSI questions.

33. Tobacco Use: Awareness 1a Purpose: These questions (NATS validated) will provide information about the extent to which support to stop tobacco use is known to WISEWOMAN patients. Proposal: A telephone quit line is a free telephone�based service that connects people who smoke cigarettes with trained counselors who can help them quit. Are you aware of any telephone quit line services that are available to help you quit smoking? 1�Yes 2 No 3 Don�t know/not sure 8 Refused to answer You may collect this may be in history or screening, but will be reported in LSI file.You may collect this may be in history or screening, but will be reported in LSI file.

34. Tobacco Use: Awareness 1b Purpose: These questions (NATS validated) will provide information about the extent to which support to stop tobacco use is known to WISEWOMAN patients. Proposal: Are you aware of any individual or group counseling services other than quit lines, that are available to help you quit smoking? 1 Yes 2 No 7 Don�t Know/not sure 8 Refused to answer

35. Tobacco Question Comments FEEDBACK

36. MDE Changes: Medication Status Rationale: Current Medication Status questions attempt to answer three things: Obtain a history of disease as shown by medication use Gain a valid clinical measure by knowing if the patient is using medication if prescribed Assess access/compliance issues (Yes, but did not take today) Questions: How is this question used? What might be gained by changing this question? Medication Status Section 7 (several questions have this situation 7a, 7b, 7c) Current Status/Question: Are you currently taking medication for (High blood pressure, high cholesterol or diabetes � 3 questions) Response choices include 1 � Yes, as prescribed; 2- Yes, but did not take today; 3 � No; 7 � Don�t know; 9 � No answer recorded �Medication Status Section 7 (several questions have this situation 7a, 7b, 7c) Current Status/Question: Are you currently taking medication for (High blood pressure, high cholesterol or diabetes � 3 questions) Response choices include 1 � Yes, as prescribed; 2- Yes, but did not take today; 3 � No; 7 � Don�t know; 9 � No answer recorded �

37. What�s Next�. MDE Definition Discussion Web on-line edit tool feedback E-mail, PO discussion and other feedback opportunities Discussion with BCCP and other CDC programs Transition Committee Input

38. What�s Next� Updated MDE Manual review and publication MDE fast track application submission MDE approved changes communicated to programs MDE manual updates with cross-walk provided

39. What�s Next �. MDE changes for data collection implemented beginning 7/1/2011 Data Quality Performance measures implemented beginning 7/1/2011

40. We appreciate your input!!!Thank you