Proposed Change to the Minimal Data Set Measure on LGBT Identity: A NAQC Dialogue We’ll get started at 2 pm ET To mute your line: *6 To unmute your line: *6 For operator assistance: 00 DO NOT PUT YOUR LINE ON HOLD!

Proposed Change to the MDS Measure on LGBT Identity: A NAQC Dialogue Scout, PhD Director, LGBT HealthLink Amy Lukowski, PsyD Clinical Director, Health Initiatives National Jewish Health Maria Rudie, MPH Research Manager, NAQC Welcome and thank you for joining us for today’s special topic webinar: “Proposed Change to the MDS Measure on LGBT Identity: A NAQC Dialogue”.

Agenda Welcome and goal of the webinar Background on MDS and the LGBT identity measure Experience with the current question, rationale for considering a revision, proposed new question & data collected Feedback from quitline callers and counselors Feedback from two state quitlines Discussion and feedback from members on proposed change to the MDS measure on LGBT identity Today we will present background on the MDS and current LGBT identity measure, followed by a presentation from Drs. Scout and Amy Lukowski on quitline experience with asking the current MDS question on LGBT identity, rational for considering a revision, proposed new questions on LGBT identity, data from the 2015 pilot, and feedback collected from quitline callers and counselors on the piloted measure. In addition, two state quitlines will present their feedback on the new measure. We will then have time for webinar participants to discussion and provide feedback on the proposed change to the MDS measure on LGBT identity.

Goals To present results from a pilot study on a revised measure of LGBT identity; and To gain feedback from NAQC members on the proposal to change the current MDS measure of LGBT identity The goals for today’s webinar are: To present results from a pilot study on a revised measure of LGBT identity To gain feedback from NAQC members on the proposal to change the current MDS measure on LGBT identity by adopting the revised measure.

Background 2005: MDS was approved by NAQC members 2006: Original measure on LGBT identity added to MDS in 2006 as an OPTIONAL MDS question (5 states interested in using it) 2009: Question and scripting updated based on research findings from the LGBT Network 2014: LGBT HealthLink and NJH proposed a pilot study of a revised measure to NAQC members (and gained member feedback on the revised question) 2016: Pilot study findings presented; NAQC decision-making process launches In 2005, the MDS was approved by NAQC members. In 2006, FIVE STATE MEMBERS OF NAQC sought the addition of a question at intake regarding LGBT identity due to significantly higher tobacco use rates among the LGBT community compared to the overall adult population. An OPTIONAL intake question was developed and added to the MDS. In 2009, the question on LGBT identity was revised and scripting added based on research from the LGBT Network. In 2014 Scout AND AMY LUKOWSKI approached NAQC seeking to test a new measure on LGBT identity. On November 18, 2014 NAQC held a webinar to gain member feedback on the proposed new measure. Scout and AMY LUKOWSKI revised the measure as a result of the feedback and then NJH recruited states to participate in the pilot test. Ultimately 14 state qutiline agreed to participate in the pilot study. In 2015, Scout and NJH conducted the pilot study and analyzed the data and feedback from quitline participants and counselors. Today Scout and Amy Lukowski, Clinical Director for NJH, will present the findings from the pilot study 14 state quitlines agreed to pilot the new measure.

Background State Quitline Utilization: LGBT Identity Before we hear from Scout and Amy, I wanted to provide you with data from the NAQC’s Annual Survey. This slide, compares data from FY2013 and FY2015 on LGBT identity reported by quitline participants that received services from state quitlines. For both years, the majority of quitline callers identified as “Straight”, while 20 to 22% of callers refused to answer the question or data were missing. This indicates that some callers may find this question uncomfortable to answer or are unsure of how to respond and therefore refuse to answer the questions. In addition, data from NAQC’s Annual Survey indicate that approximately 36 STATES NOW USE THE MEASURE ON LGBT IDENTITY, UP FROM 5 STATES IN 2006. NOT ALL STATES ASKING ABOUT LGBT identity fully adopted the current measure as reflected above. For example: some states use the response option “heterosexual or straight”. IT IS IMPORTANT THAT THE STANDARIZED QUESTIONS DEVELOPED for the MDS BE FULLY IMPLEMENTED IN TERMS OF QUESTION AND RESPONSE CATEGORIES.

Proposed Process for NAQC Decision-making on MDS Since 2005, there have been many changes to the MDS Process has involved “hearing the case for change”, presenting the case to members, and then moving toward a consensus decision Since the adoption of the MDS by NAQC members, there have been many changes. The typical process for changing the MDS has: started with a member, or members, requesting a change to the MDS be considered NAQC convening MEMBERS and experts in the field related to the topic to gather data, assess options and make recommendations back to NAQC for consideration A presentation of the findings and conclusions to NAQC members Opportunity for NAQC members to comment and provide feedback Review of all feedback from NAQC members by NAQC staff Final decision made by NAQC staff and communicated to NAQC members.

Timeline and Process for NAQC Decision-making on MDS April 5: eBulletin notifying members of proposed change and seeking feedback April 6: Webinar on proposed change April 6-20: Feedback from members Discussion at end of today’s presentation Written comments accepted through April 20. Please send to: Maria Rudie (mrudie@naquitline.org) May 2: Final Decision Announced via e-Bulletin to NAQC members. On April 5 an eBulletin was sent to all NAQC members providing background information on the current measure, a rationale for revising the measure, findings from the pilot of the revised measure and asking NAQC members to provide feedback to NAQC on the proposed adoption of the revised measure. Today’s webinar will provide the same information contained in the eBulletin, as well as an opportunity to hear about the pilot study from the researchers and time for discussion. NAQC will continue to collect feedback from members via email until April 20. A final decision will be announced via eBulletin on May 2.

Background on current measure 2008 Option 4: LGBT Identity + probe Testing commissioned by Blue Cross Blue Shield of Minnesota, for use in two applications: state tobacco quitline and state surveillance instruments. www.lgbtcenters.org

Current Measure Recommended question and scripting: Several community have been targeted by the tobacco industry or have higher smoking rates. We have some special materials for people in this community. So we’d like to ask you some demographic questions. Please remember that your answers are completely confidential. “Do you consider yourself to be one or more of the following” [counselors are instructed to say both the letter and response option so that participants can respond with either] Straight Gay or Lesbian Bisexual Transgender Other [precoded responses NOT read aloud include i. Queer, ii. Genderqueer, iii. Dyke, iv. Other]

Challenges of current measure Newer testing shows “heterosexual” should never be in question, too confusing The “Check all that apply” not uniformly said, leaving the question confusing to some

Feedback from Quitline Counselors A small but vocal percentage of folks wanted to vehemently say “no!” in response to question, but it’s not formatted to allow that. Some older respondents felt it was asking about sex life There was no adequate f/up statement for those that questioned why it was being asked.

Pilot Study of New LGBT Identity Measure with 14 State Quitlines

Overview of LGBT Data Collection Option 3 2+ measures: LGB + (1 or 2-step T) Option 1 Single measure sexual identity Option 2 Single Yes/No LGBT measure T data No breakout options T data Breakout More landscape T data missing On largest sample Gallup n=120k On CDC HIV Case Reporting + MA BRFSS On NHIS www.lgbtcenters.org

Or… www.lgbtcenters.org Option 4 LGBT Identity + probe T data Breakout Less landscape In use by 15 state quit lines Field tested 33k times www.lgbtcenters.org

Proposed Enhanced Measure Do you consider yourself to be gay, lesbian, bisexual, and/or transgender? Yes No [If No continue. If Yes, prove with the following question.] [If callers show concern about this question, feel free to add the following sentence: “LGBT people smoke at higher rates than others; we ask this to ensure we're serving all people equally.”]   Thanks, please indicate all of the following which apply to you: [read all response options].  Bisexual [yes/no] Gay or [for a woman] lesbian [yes/no] Queer [yes/no] Transgender or gender variant and assigned male at birth [yes/no] Transgender or gender variant and assigned female at birth [yes/no]

Benefits of Measure Allows the vocal minority to say “no!” Provides more options to gather a wider group of trans respondents Eliminates the cumbersome “other” category which wasn’t helping much Clarifies it’s about a lifetime identity, not recent sexual activity Reduces administration burden since longer verbage only read if someone is LGBT Expected to reduce measurement error since less understood verbage only read if someone is LGBT Has explanatory sentence to reduce respondent confusion

Field Testing 14 NJH States Timeframe - April to July of 2015 Alabama, Colorado, Kentucky, Michigan, Minnesota, Montana, Nevada, North Dakota, Ohio, Pennsylvania, Vermont, Idaho, Utah, and Wyoming Timeframe - April to July of 2015 Testing results 33k administrations 5% yield

Results The measure was gauged to be easier to administer by 79% of intake staff Easier to answer for LGBT respondents by 74% of intake staff, and Less disruptive to people uncomfortable with the topic by 74% of intake staff

Feedback from State Quitlines Judy Ochs, Director, Division of Tobacco Prevention & Control, PA Department of Health Karen Brown, MPA, Tobacco Dependence Treatment Coordinator, Michigan Department of Health and Human Services

Feedback from Pennsylvania PA considers this question to be a key demographic. Has included a LGBT question since launch of the quitline in June 2002. PA supports the recommended changes and there were no red flags during the pilot. Data will inform outreach efforts, reach and effectiveness analyses I will comment on our expanded efforts through the LGBT Health Assessments currently being conducted statewide

Feedback from Michigan Increase in calls Focus groups Call responsiveness Adaptation Media Collaboration

I will comment on our expanded efforts through the LGBT Health Assessments currently being conducted statewide

NAQC’s Proposed Change to the MDS NAQC proposes changing the MDS measure on LGBT identity to the version that was pilot tested in 2015 as of July 1, 2016 .

Questions, Comments, Discussion! Do you agree with making the proposed change to the MDS measure on LGBT identity? Please share any concerns you have with the proposed change. Does the implementation date of July 1, 2016 seem reasonable to you? Thank you Amy and Scout for presenting us with the findings from your pilot study! At this time we are going to open the lines so NAQC members can ask questions about the pilot study, the current or revised questions on sexual identity, as well as provide initial feedback on the proposed change to the MDS. This will be the first opportunity for NAQC members to comment, but please remember that you can submit feedback via email to me until April 20.

mrudie@naquitline.org or Thank You! To provide additional comments on the proposed change to the MDS measure on LGBT identity, please contact Maria Rudie by April 20, 2016: Maria Rudie, MPH Research Manager, NAQC mrudie@naquitline.org or 800-398-5489 ext. 704