HRSA SPNS US/Mexico Border Health Initiative Grantee Meeting

Centro de Evaluación: US/Mexico Border Health Evaluation & Technical Assistance Center

Center for AIDS Prevention Studies Conference Room - 6^th Floor

74 New Montgomery - San Francisco, CA.

January 11-12, 2001

Goals and Objectives of Meeting:

I. Report status of projects

II. Review and Approve Data Modules

III. Determine content areas for additional modules/variables for multi-site evaluation

IV. Develop Qualitative Questions

Thursday – January 11, 2001

Registration from 8:30 - 9:00 a.m. Participants registered were: Ken Burton, Steve Trujillo, Barbara Estrada, Antonio Estrada (Arizona Border HIV/AIDS Care Project); Kari Maier, Luiza Amodeo, Joao Ferreira-Pinto, Richard Jimenez (Camino de Vida Center for HIV Services); Ray Stewart, Tony Chavez, John Wiebe (Centro de Salud Familiar La Fe); Rosana Scolari, Maria Luiza Zuniga (San Ysidro Health Center); Charles Smith, Thelma Montelongo, Yolanda Cantu (Valley AIDS Council); Barbara Aranda-Naranjo, Robyn Schulhof (HRSA); David Barney, Herman Curiel, Betty Duran, Kurt Organista, Michael Tarter (Centro de Evaluación); and George Huba of the Measurement Group.

Welcome by Susan Folkman, Assistant Director of the Center for AIDS Prevention Studies.

Goals & Objectives by Herman Curiel. No changes made by participants.

Evaluation Update: David Barney provided an overview on the multi-site evaluation. Advised that final draft of preliminary instruments (demographics, lifestyle, risk, quality of life, program support and client satisfaction) had been completed and that presently we are lacking a module for barriers and outreach which will be completed within the next six months. Informed the participants that little feedback was received from projects and that which was received was incorporated into revisions. All modules are not set-up as interview forms but as forms that may be completed by data collectors based on information obtained during in-take and assessment or in client medical files. Code book has been developed. The issue of translation was raised. It was proposed by the group that some universal translation needs to be conducted on all forms. John Wiebe advised that the language department at UTEP is certified for Spanish translation and he was willing to speak with Dr. Ford regarding translation of the evaluation modules and code book. Richard Jimenez asked if the modules would require IRB approval. David advised that the modules are project forms and should be reviewed by their local IRB committee for approval. Translation will take some time to complete, but projects who are comfortable with using the English forms may begin data collection, otherwise they may need to wait for a few months before the translated modules are available. Yolanda Cantu asked which forms need to be administered at six months: these are Quality of Life, Client Satisfaction, and Program Support. Charles Smith asked for the frequency of administration for each module: Demographics one @ in-take; Risk Factors @ in-take; Program Support annually; Client Satisfaction annually, Quality of Life annually based on in-take anniversary. John Wiebe stated that many would need to be administered at in-take in order to establish a baseline. Maria Zuniga asked if protocol will explain the Question being asked, to which David responded in the affirmative. Michael Tarter asked if there would be many dialects along the border, and if so, then a certified translator should be considered for the translation of the modules and code book. Barbara Estrada stated that field staff should be advised to report difficulties encountered with Spanish translations so that evaluators may address those concerns. Barbara Aranda-Naranjo asked if projects should submit the English version of the modules for IRB review and the group recommended that projects wait for the Spanish translation and then submit both instruments for review. Projects were asked to share their IRB status with the group. Arizona has submitted for local IRB review; San Ysidro has obtained local review; El Paso didn't include multi-site in IRB application, needs to submit revision; Harlingen has been told to submit for expedited review by University IRB; New Mexico did not know status of their IRB application as Joao was not present at this time.

Barbara (HRSA) will provide financial support to La Fe to arrange for translation - estimate cost at $40 per hour. John Wiebe believes it will take about one month to translate the instruments. David advised that when translation is complete, this needs to be entered into TELEform which will also take some time. Bob Smith suggested that each project begin data collection based on their assessment of local readiness. David Barney will work with John Wiebe on translation of forms. All forms reviewed at this meeting and approved will be corrected and made available to data collections at the training to be held in Norman on January 19-20, 2001. All projects will be able to fully implement their programs after the data training is completed.

Michael Tarter suggested it would be important to track language used in administration of modules. Maria agreed it would important to track - David will include a variable to track how the module was administered. Barbara (HRSA) suggested that if both English and Spanish is used, that the module indicate that as well.

HRSA - Barbara Aranda-Naranjo introduced HRSA project officer, Robyn Schulhof. Barbara advised that Ledia Martinez will also be working with the HIV/AIDS Bureau as project officer for two sites. Robyn will be project officer for San Ysidro, Arizona and New Mexico. Ledia will work with El Paso and Harlingen. They will both work as a team on the Border Health Initiative. Wayne Sauseda will also continue to maintain contact with the Initiative partners.

Barbara announced that a new Request for Applications (RFA) to be announced by HRSA in the near future. She advised it’s focus will be Capacity Building to which many of the local projects may be eligible and are encouraged to apply. Four new initiatives are being developed by HRSA. They include: 1) Contracted Centers to look at methodologies for Unmet Needs (includes outreach and innovative models) - 3 year grant; 2) 17 projects and an evaluation center which will include a 2-yr planning phase in a 5-year cycle - anticipate this will be released at the end of March or April 1^st with a 60 day turn around - looks at persons not in care; 3) Technology; and 4) Title IV - family centered care - fund only one agency.

Semi-annual report was discussed. Projects were advised to include their logic model and flow chart in their report. Projects are encouraged to contact Robyn or Ledia is they have specific questions or require any assistance. She informed projects that their efforts were on target and thanked everyone for their cooperation and hard work. Emphasized communication is important and if HRSA or Evaluation Center do not respond quickly, encouraged projects to continue to raise their issue and not let time lapse or assume no response means all is OK. Thanked George Huba for his collaboration and sideline in helping with data modules. Encouraged all projects to share with their local planning councils the project logic model and information about what their projects are doing. She advised receiving information that Valley AIDS had 15 new cases last month and that the physician advised he had 5 new births with Moms who were HIV+. This gives us an idea of the possible extent of the unidentified epidemic. Need projects to focus on how to develop and strengthen collaboration with Mexican providers along the border and submit a brief summary of what each agency could achieve if resources were available to support this effort. Projects were asked to submit their proposed ideas with a simple budget to her within the next three weeks.

The group was advised that the US/Mexico Border Health Association has invited our projects to present at their meeting in Las Cruces in late May 2001. HRSA will follow-up with projects on completion of an abstract. The plan is to have local projects present their logic model and program plan, then follow-up with a report on the multi-site evaluation. Depending on how many project staff are able to attend, we may schedule a brief group meeting.

Project Reports:

Arizona Border HIV/AIDS Care Project: Steve Trujillo provided a project overview followed by Barbara Estrada who discussed evaluation implementation. Barbara discussed use of contact cards for outreach; 1-page Procedure sheet for each instrument (instructions); use of HIV-testing bubble form for data collection; referral activity tracking log to examine linkages; cover sheet to accompany modules which indicates if person consented or refused to participate in study; use of Karnosky scale; use of Physician contact sheet (to be used on consult with other doctors); patient survey on HIV-care; Agency assessment for Providers; described total target population (N) is 13,000 outreached with 4,000 tested and 280 HIV+ into primary care; described data to be collected by Outreach workers and Physicians; advised all health centers serve Native Americans, Yaki tribe has a health plan contract with El Rio Health Center and Tohono Odom receives health care through the Indian Health Service. Profile: Steve has established a baseline for persons living along the US/Mexico border in care - this includes people being diagnosed late in disease stage (AIDS); of those identified, 1/2 are HIV and 1/2 are AIDS; 25.27% are Latinos; 74% are males and 26% are females (many of the women's husbands are deceased). Barbara stated it is important to profile the population being served.

The group asked for the definition of trans-border. Group agreed that it is important to define trans-border in order to support consistency in our data collection. Discussion focused on Mexico not promoting testing only prevention due to lack of care for HIV infected. Need to look at these issues when developing Qualitative Interviews.

Camino de Vida Center for HIV Services: João reviewed project goals, flow chart, and Logic Model. Advised project will use Orasure for HIV testing. The project has developed four primary research questions. Discussed data collection responsibilities among staff. Target population is 500 outreach with 100 persons HIV tested and 10 anticipated new HIV/AIDS cases, of which 15% of overall are considered as trans-border clients.

Centro de Salud Familiar La Fe: Has changed their name to La Fe Care Clinic. All La Fe staff were introduced. John Wiebe discussed their logic model and advised that their application for Protection of Human Subjects was still pending review by UTEP. Reviewed agency organization chart and HIV client referral flow chart.

San Ysidro Health Center: Mari reviewed their Activity time line and logic model. Rosana gave a brief overview of the activities for each of their four collaborating partners (North County, Central County, Imperial County, and South County). Plan to implement their program on February 1, 2001. They will provide five primary services: 1) HIV case management; 2) HIV Primary Care; 3) ADAP enrollment site; 4) Treatment Education; and 5) Interpretation/translation on site. They asked HRSA staff if cash incentives could be used, Barbara Aranda-Naranjo advised that NO cash should be given to clients but they can be provided food vouchers or gift certificates.

Valley AIDS Council: Presented they project information using a power point presentation. Reviewed their flow chart. Advised they plan to implement services on February 15, 2001.

George Huba - The Measurement Group: Provided the group a brief history of the Measurement Group and his work with SPNS projects. In 1993-98 his agency worked with 10 adolescent HIV/AIDS Service providers and between 1994-1999 he coordinated the multi-site evaluation of 27 Cooperative Agreements. George provided handouts to all participants on Module 7-8-9 Agency Infrastructure. Encouraged projects to look at his web site and look at the different data instruments they developed for the various projects.

Part II - Medical Chart Abstraction: George advised this would be a retrospective review of client medical information. It is recommended that the chart review be conducted at the end of Year 03 of the grant. He suggested that medical clinics review the "John Bartlett's Clinical Guide on HIV/AIDS Clinical Care. The guide provides the medical standards for HIV/AIDS medical care. He suggested that conducting a retrospective review of client medical charts would take approximately 2-4 hours per chart to complete. There were two coding options for chart reviews: one would be to train local project staff at each site to conduct the chart reviews or the second option was to have a centralized group of coders who would go from site to site completing the chart reviews (this effort could easily be contracted out).

Barbara Aranda-Naranjo asked the group to decide on prospective versus retrospective approach to medical outcomes. Discussed importance of entering into an agreement with the medical providers that would include the medical clinics agreement to allow the chart review. John Wiebe said it would be important to know which projects have unfettered access to medical records. Discussed maintaining confidentiality by using URN. Barbara advised that use of Title III funding for medical care should encourage providers to collaborate in this effort. Group agreed to have medical charts extracted at the end of Years 03 and 05. George advised you could have 100% sampling by looking at quarters or units in the medical charts, of which 10% could be double coded for reliability. He further advised that chart reviews also need to be part of the IRB review process locally. Kari asked who signs the agreements locally, she was advised that all medical providers serving clients should be asked to sign a collaborative agreement. Client consent form should also include agreement to allow medical chart review in Years 03 and 05. Barbara asked sites to work on these agreements as soon as possible. Inform providers that multi-site evaluation center can employ designated abstractors who would conduct the chart abstractions.

Friday - January 12, 2001
Meeting started at 8:30 am

Definition of Trans-Border: The group identified characteristics of persons who would possibly be Trans-Border. Following is the list of Characteristics:

1. Reside on either side of the border 2. Are Spanish speaking

3. Work or travel on either side 4. Recreate on either side of border

5. Identify as Latino 6. Are Cross-Cultural

7. Receive or seek services on both sides 8. Have social support systems on both sides of border

of the border 9. Receive income on either side of border

10. Proximity to border - 62 miles on either 11. Nationality

side of the border 12. Have social - cultural ties

The groups agreed on the following definition: Transborder is any person who works and/or resides within 62 miles of the US/Mexico border (either side of border - US or Mexico), as well as accesses/receives services on both sides of the border.

Thelma asked if projects are looking to also identify persons who are not eligible for services as persons with needs? Barbara said it is important to document who we are serving only; local projects may need to determine how to document who is ineligible for services.

Review: Medical Chart Reviews: Chart reviews will be conducted at two time periods - end of Years 03 and 05. A. Local projects need to include medical chart review in client consent forms. B. Local projects need to enter into Memorandums of Agreement with Medical Providers, with providers agreeing to participate in medical chart reviews. Ken advised that a decision should be made by the group as to who will conduct the medical chart reviews so that information could be entered into the Memorandum of Agreements and IRB applications. George suggested not committing to a central team, but consider training a local person to extract the information or hire a local nurse/health professional to handle the medical chart extraction locally. The group agreed to the medical chart extraction. Projected cost is $40 per chart. Yolanda agreed to draft a Memorandum of Agreement and projects should contact her for a draft copy or assistance in developing their own.

Multi-site Logic Model: David presented the multi-site logic model. Discussion was held on the need to add Outreach & Testing. Question was raised as to clarification between contacts and persons. The group agreed on the definition that projects will record number of contacts versus number of persons contacted. Ken expressed concern that equal weight should be given to systems impact and client outcomes, is this considered in logic model? Group proposed that a module be developed for implementation in Yr. 03 for systematic changes with qualitative to be done by the Evaluation Center. George suggested long telephone interviews with providers. NM is planning to do something similar with their providers. Yolanda suggested a task force to work on this issue. She volunteered to chair the task force, João, and Barbara Estrada volunteered to work with Yolanda on systematic evaluation module. George informed group that Outcome numbers in logic model are not a commitment because SPNS projects are demonstration projects that want to demonstrate outcomes. Barbara Estrada motioned that logical model be left as is, group voted in favor.

Web Page: Group agreed to call in additions to calendar and address changes (Robyn, Steve, Kurt, Michael and George). David asked projects to look at web page and submit items to be posted, including project abstracts. Advised group that a user name and password must be entered in order to get into the data entry pages - Used name: database - Password: pepe

Data options for submitting information are 1) paper copy completed and mailed in; 2) Fax completed forms (least preferable); and 3)electronic completion on web site.

Agency Codes: Up to 3-letters or 3-numbers; must provide David with agency code by January 18, 2001.

David provided a demonstration on data entry. He encouraged all projects to use URN number. Maria Luisa asked David to mail URN guidelines, David advised they will be listed in the code book. All data will be entered on Excel which will be cumulative listing data by site with encrypted data files for security. David advised that Evaluation Center is also available to assist local projects develop their modules for electronic data entry. David will provide a data file to each agency on a monthly basis reporting cases received during the month.

Tasks outlined for Agencies:

+ submit sub-site codes

+ data collectors personal identification to be used on data modules (identification number).

David advised agencies can be a sub-site of another - example El Paso client accesses services thru NM.

George recommended developing a method to verify that URN entry is correct. Data modules reviewed and corrections/changes made as follows:

Demographics - to be completed by case workers.

Hispanic Group - add check one.

Training issue: Client can identify as Native American but check off as Hispanic (follows protocol of OMB census guidelines).

Zip Code: May use either employment or enrollment site

Missing Data: Use 999

Miles: Use miles or kilometers (use estimate) *add formula to convert kilometers to miles

Yrs. Education: merge professional with doctorate

Add GED under grade level - deleted GED box

Country of Education: delete both US and Mexico

Household size: everyone who lives under one roof - current residence

Incarcerated: change response to Yes and NO

HIV Status: Add client self-reported status

Add variable for children under 13 years

Date of HIV Infection: Change to date of Diagnoses

Primary Health Care Source (US Side - Module A) – Change to only 3 choices

Emergency Room

Regular outpatient care (clinic/doctor)

None

Source of Income: Add Other

Household Income: delete coma, add: Annual

Referral to Primary Care: no change

Employment Status: define disabled

Presenting Issues: change response to YES NO DIDN’T ASK

Yrs. in Catchment Area: No change

João motioned acceptance of module with recommended changes, seconded by Barbara Estrada. Motion passed.

Lifestyle:

Client has ties to: delete cultural (define in protocol)

Interview format must be used in Acculturation Scale

Change to first person in all questions

Ask interview language for all modules

Client travel for delete factory – ADD non-farm job

Client receives the following (medical care) – ADD: Yes - NO - Didn’t Ask as response choices – Also ADD: Social Support in Mexico

Client receives (medications – traditional healing) in Mexico – ADD: Yes - No – Didn’t Ask as response choices

Housing Status: institution (less than or equal) to 30 – ADD: in-jail

Marital Status: Married – delete common-law

Which ethnic identification does (did) your father use? Under Spanish – Change American to South American

João motioned acceptance of module with recommended changes, seconded by John Wiebe. Motion passed.

Risk Factors:

Drug Use: Add: Heroin Crack Cocaine - Other Illicit drug

Barbara Estrada motioned acceptance of module with recommended changes, seconded by Mari, Motion passed.

PGM Support:

Add: Would take time to talk to me on personal level.

Add: Is interested in me as a person and not just as a client.

Add: Really cares about how well I do.

Replace #7

Scale should be changed to Lickert - range 0 to 10

Keep questions No. 2, 4, 6, 9, 12,

Change #14 to: Would help me through a crisis.

João motioned acceptance of module with recommended changes, seconded by Barbara Estrada. Motion passed.

Client Satisfaction:

Group decided to combine PMG and Client Satisfaction.

Add question #1 and #10 to Module G

#10 needs to be reworded to: The staff here understand the social service needs of people like me.

Barbara Estrada motioned that #1 be accepted, #10 be modified and both combined into Module G, then eliminate H. Also drop demographic information from module but keep URN - Add staff initials to all modules.

Quality of Life:

George advised group this comes from the medical outcomes which has worked very well in past. Group chose to remove demographics. João motioned acceptance of module with changes, seconded by Michael.

New Issues:

Barbara asked grantees to think of how they could be utilize $100,000 supplemental funding is available through HRSA. HRSA is interested in seeing how projects could use resource with clients along the border and in Mexico during a one year period. Asked grantee to submit their ideas to her within the next few weeks.

Barbara Estrada asked evaluators if they would be agreeable to meet sometime while in Norman to discuss local evaluation issues that may be common across all sites. All were in agreement

Qualitative Study:

Barbara (HRSA) believes that about 80% of the barriers module could be developed and then use the focus groups to finalize the questions for the module. Purpose of focus groups is “Identify barriers to HIV primary care.” Michael advised that it is not necessary to obtain a random sample but a group which closely resembles the target population. Charles said existing clients can identify problems they encountered in getting into HIV services. Thelma asked if information would be obtained through questionnaire or focus groups. The focus groups would be used to identify potential barriers which will be used in the development of the barriers module which would latter be completed by all clients. George encouraged the group to look at unique issues not covered under previous barrier scales. David suggested that we could post an inventory of potential barriers on the web page and ask local staff to complete the inventory based on their experience in working with clients and use this information in development of the qualitative questions. Charles asked if focus group participants would be provided an incentive. Betty advised that the IRB protocol stated participants would be provided a food voucher. Presently the qualitative focus groups will not be conducted until the beginning of the new grant year (July 2001). Two focus groups will be conducted at each demonstration site with a maximum of 9 participants per group. All sites agreed to have the focus groups conducted in Spanish.

Next meeting will be planned for September 2001 with possible sites as Valley AIDS Council or San Ysidro.