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Management

Assessment / Evaluation

Research

Continuous Data Collection for HIV/AIDS Service Needs Assessments

Body

This presentation was used in a 90 minute panel discussion at HRSA to highlight procedures and barriers involved in collecting quantitative and qualitative data on a continuous basis. The data is analyzed for input into a planning process that established service priorities and funding.  Methodologies to measure service needs, gaps, and barriers were explained.  The continuous data collection process adopted by Los Angeles County was used as a case study. Six topics were reviewed: 1) designing quantitative data using multiple methods (in-person, phone, and on-line); 2) HIPAA requirements and considerations; 3) obtaining representative sample from difficult to reach populations while maintaining confidentiality; 4) designing complimentary focus groups; 5) instrument development, and 6) analysis strategies.

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Workshop on:
Continuous Data Collection for HIV/AIDS Service Needs Assessments
Presented at RWCA All-Titles Grantee Conference By Craig Vincent-Jones* and Mitchell Cohen** August 2004
* Executive Director, Los Angeles County Commission on HIV Health Services ** Executive Director, Partnership for Community Page 1 August 2004 © LAC/PCH
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Definitions
“Continuous Data Collection” refers to ongoing feedback from PLWH/A regarding their demographics, service needs, and barriers to HIV/AIDS services.
 Replaces periodic consumer surveys, focus groups, and key informant interviews.
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Learning Objectives
 You will be able to assess the applicability of ongoing data collection for your organization.  You will see the value of combining quantitative and qualitative data.  You will understand how to combine in-person, phone, and online data collection.
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We Will Review and Discuss:
 Designing quantitative continuous data collection using multiple methods (in-person, phone, and online).  HIPAA requirements and considerations.  Obtaining representative samples from difficult to reach populations while maintaining confidentiality.  Developing surveys and focus group outlines.  Designing complementary focus groups.  Analysis strategies.
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Case Study: Los Angeles County
HIV Care Assessment Project (H-CAP)
H-CAP conducts a yearly survey and set of focus groups with PLWH/A that measures their needs, barriers, and gaps in HIV/AIDS services.
 About 825 PLWH/A are interviewed each year.  Participants who agree to be in a panel are interviewed yearly.  Changes in needs, barriers, and gaps in services are analyzed over time.  There are 8 focus groups each year with about 12 participants each that explore special topics.
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H-CAP Basic Principle
Input from PLWH/A regarding service needs, gaps, and barriers is essential for effective and efficient planning of HIV/AIDS services.
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Reasons for Launching H-CAP
Los Angeles County HIV/AIDS Strategic Planning Process developed a “Continuous Data Collection” process because of:
 The constant evolution of needs  An interest in identifying emerging needs.  The need for data to help assess service delivery.  The size of the LA County HIV/AIDS service delivery system, and volume of clients, requires regular and consistent attention.
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Reasons for Launching H-CAP (cont)
Los Angeles County HIV/AIDS Strategic Planning Process created the “Second Generation Needs Assessment” concept because of:
 An annual comprehensive needs assessment in LA County is cost-prohibitive.  Never enough clients in certain special populations required for proper sampling of specific issues and topics.  Many issues need to be explored more extensively for accurate knowledge.
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Reasons for Launching H-CAP (cont)
Los Angeles Experience with past Consumer Focus Forums:
 Data was unreliable and not randomly sampled.  Certain populations were heavily over-represented.  Process vulnerable to specific provider agendas and/or the messages specific parties wanted relayed.  Hosted at provider sites, specific providers’ clientele had more of an advantage: • Creating conflicts-of-interest in the process.  Forum effectiveness was widely variable due to client participation and forum facilitation.  Process not satisfying for clients.
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Actors in the Needs Assessment
1. The Commission on HIV Health Services (Commission) – Sponsors H-CAP, shares management and analysis with consultant, PCH. 2. The Office of AIDS Programs and Policy (OAPP) – Logistical support, including interface with providers. 3. Partnership for Community Health (PCH) – Consultant who designs and implements H-CAP, including all interviewing. 4. Providers of HIV/AIDS Services - Recruit participants. 5. People living with HIV and AIDS (PLWH/A) – Participants in the survey and focus groups. 6. Institutional Review Board (IRB)– Reviews and recommends procedures for conducting ethical research including protecting human subjects.
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Information Will Be Used By:
 The Care Council (Commission)  The Grantee (OAPP)  Providers  PLWH/A and advocates for PLWH/A  State and Federal legislators
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Information Will Be Used In:
 Needs Assessment and Comprehensive Plan.  Prioritizing and funding of services identified in the Los Angeles County HIV/AIDS Continuum of Care.  CARE Act Titles and other applications for funding.  Developing and modifying needed direct and wrap-around care services.  Developing policy.
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LAC CONTINUUM OF CARE
* Only funded service categories are listed Case Mgmt, Psychosocial* Translation/interpretation (other support services) Case Management, inpatient (medical) Referral for health care / support services
Food Bank, Home DM, Nutritional supplements Housing assistance & services Transportation Child care Client advocacy
Legal Services Permanency planning Outpatient medical Outpatient specialty Mental health: Psychiatric Mental health: Psychological Nutritional counseling Oral health Substance abuse services Treatments adherence Hospice services
6. PROGRAM SUPPORT Service Coordination Capacity Building Service Enhancement Evaluation Training & Education Program Research & Review Rate & Fee Review Program Development
5. ENHANCEMENT SERVICE Psychosocial Support Service HIV support
7. PLANNING COUNCIL SUPPORT Planning & Priorities Setting Evaluation Activities Public Awareness Efforts Training Activities Staffing Pattern
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Population of PLWH/A*
PLWA Estimated PLWH: aware of status Estimated PLWH/A: aware of status Estimated PLWH: unaware of status TOTAL ESTIMATED PLWH/A
17,971 26,957 44,928 9,000 53,928
* Adults and adolescents. Based on LAC HIV Epidemiology Program, AIDS as of 6/30/03. PLWA estimated to be 40% of all PLWH/A aware of status.
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PLWH/A in CARE Act-Funded Services
There are approximately 25,000 unduplicated individuals reported receiving services from CARE Act-funded providers.
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Sampling
To achieve a sample that represents all PLWH/A in Los Angeles County, H-CAP:
 Created a stratified random sample of PLWH/A.  Enlisted providers to recruit the sample, but the HCAP staff (PCH) does the interviewing.  Created an out-of-care sample from provider records, networking, and agreements from testing sites that follow-up on those referred to care.
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Determining Sample Size of 825 / Yr
1. Make sure there are enough individuals in each subpopulation being analyzed. 2. Work within the budget constraints.
 There is often tension between sample size and cost. Each completed interview costs over $125.  Larger samples are not necessarily better.
• Random samples are more representative than larger self-selected or non-randomly selected samples.
 Unintended result of incentives is duplicates which should be controlled.
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Stratified Sampling Plan
Risk Group MSM MSM/ IDU IDU HET Anglo M 50 40 30 30 25 45 F African Am M 50 20 50 30 45 50 F Latino M 70 30 20 30 25 45 F M 35 10 10 5 5 5 API F Other/Mix TOT M 10 0 0 5 0 5 F 215 100 210 250 25 25 150 95 150 70 60 10 15 5 825
Transgender American Indian TOTAL 150 70
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Recruiting
The stratified sample was divided between 57* providers based on their reported client profile.
 Each provider was given a sampling sheet specifying the number and profile of clients that were required. Provider burden ranged from under 5 to over 250 participants per year.  H-CAP established three recruiting periods to spread provider burden and keep a continuous flow of interviews.
* 8 providers who do not provide 1-1 services such as taxi companies or small residential providers were excluded.
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Recruiting (cont)
H-CAP asked that:
 Providers recruit active clients.  Medical providers also recruit those who have been out-of-care more than a year.  Providers recruit as many transgender, American Indian, youth, undocumented, and out-of-care as possible.
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Provider Cooperation
How do you get providers to cooperate?
 The Commission and OAPP sent letters to Provider Executive Directors and Board Chairs .  H-CAP asked that the ED designate at least one person to coordinate the effort plus an alternate who could manage recruitment if the primary person left or was unable to coordinate recruitment.  H-CAP organized a large initial training and several remote trainings.
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Provider Cooperation (cont)
 Providers are paid $8 for each referral that participates. Providers are paid twice a year to protect the confidentiality of the participants.  Providers have a contractual obligation to assist in the needs assessment.  OAPP the grantee, cooperated by informing providers that H-CAP participation would be reviewed as part of their monitoring.  PCH staff was very persistent in follow-up, reminders, and monitoring progress.
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Health Insurance Portability and Accountability Act (HIPAA)
 HIPAA requires that confidentiality be a primary concern and that the protocol is fully reviewed by the Department of Health Service’s Institutional Review Board (IRB).  The panel component meant that the client information was confidential, not anonymous.  H-CAP noted there was minimal risk for the participant provided confidentiality was assured.
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Institutional Review Board
 Two separate IRBs were submitted for the questionnaire component and the focus group component.  Co-PIs were designated from the consultant and Grantee.  All parties involved wanted input on all facets of the design, delaying it several months.
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Institutional Review Board (cont)
 Once submitted, the IRB accepted the survey component with few reservations.  Focus group component was exempted by the IRIB.  Unanticipated, University- and hospital-based providers had to submit their own institution's IRB and receive approval before they could participate in recruiting.
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Confidentiality
An H-CAP Confidentiality Policy and Procedures manual was written.
 Staff and recruiters must read the “Confidentiality Policy and Procedures Manual”.  All staff signs the Consultant Confidentiality Agreement acknowledging that they understand :
• The importance of keeping the identity of the persons being recruited confidential; • All confidentiality guidelines have been reviewed; • That there may be a legal penalty for breaching confidentiality.
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Confidentiality (cont)
Confidential materials (names) are kept in locked files or desks at H-CAP and provider offices. There is no faxing of confidential material. Documents that are no longer needed are shredded. Electronic files with confidential information are encrypted and password secured or on disks and removed from the system when not in use. An annual review seminar covering confidentiality and security policies and procedures is required as well as another signed confidentiality agreement one year from the signed date.
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Commitment to Confidentiality
Staff and recruiters complete an online course offered by training@UCLA before recruiting that takes up to four hours to complete.*
 General introductory course to HIPAA rules including Multiple Project Assurance, IRB review, ethical issues  Social Behavioral Research including risks, informed consent, consent process  Certificates of completion are either e-mailed or checked online.
* Those without computer links can use computers at OAPP or the Commission
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Recruiting Participants
 H-CAP staff develops an appropriate random selection process with each provider, for example every third person in the waiting room on Mondays and Wednesdays, every fourth person on the appointment list, etc.  H-CAP participants must sign Informed Consent and HIPAA Authorization forms before a screening is completed.  Because signatures are required, the final step of the recruitment has to be done in- person.
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Recruitment Text
H-CAP prepared recruiting text for provider recruiters, but once learned recruiters can can paraphrase as long as they go over the main points including confirming that:
 It is the designated respondent.  Respondents are in a place where they can talk to you about H-CAP, or arrange another time to talk.  Respondents are 18 years or older and HIV positive.
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Those Recruited are Told:
 They have been selected specially to represent PLWH/A, and their input is critical to assessing the HIV/AIDS care needs for all PLWH/A in Los Angeles  Their participation is entirely voluntary and confidential, and that their names will never be associated with their answers.  Their provider(s) will not know their answers or even if they participated. Participation will not effect the services participants receive.  Survey are 45-60 minutes and can be completed online, over the telephone or in-person.
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Participant Compensation
Participants receive a food voucher as compensation.
Year 1 Year 2 Year 3 Year 4 Incentive $20 $30 $40 $40
Participants receive an additional $20 voucher if they participate in a focus group.
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Refusal Form
If the client decides that she or he does NOT want to participate in H-CAP, an anonymous Refusal Form is completed by the recruiter so refusal rates can be calculated.
 Ethnicity  Already recruited elsewhere  Reason for refusal
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Provider Recruiter 1. Sign confidentiality statement 2. Complete HIPAA Course and Protecting Human Research Subjects 3. Randomly select PLWH/A 4. Recruit participants for survey and focus groups
Task Flow
H-CAP Staff PCH and Commission 9. Train recruiters 10.Confirm participation 11.Arrange logistics for participation (transportation, day care) 12.Interview in-person or phone 13.Help desk for those who complete the survey online 14.Data entry & analysis 15.Report findings
5.Fill out refusal form
6. Administer Informed Consent and HIPAA Authorization Form 7. Complete screening form and call or deliver to H-CAP staff (no fax). 8. Hand out enrollment kit
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Enrollment Kit
Recruited participants receive an enrollment kit that contains:
 A copy of the Informed Consent and HIPAA Authorization forms.  A completed Participant Card (with Confidential ID).  Web-page address and directions to complete an online survey.  Summary of the project.
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Screening Form
Completed by recruiter and contains:
 Basic demographics (ethnicity, sex, risk group).  Contact information.  Preference for in-person, phone, or online survey.  Assigns a confidential ID.  Notes if participant would be willing to participate in focus groups.  Screening information transmitted by phone or hand delivered to H-CAP staff. No faxing of confidential contact information.
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H-CAP Survey
 60 – 90 minute questionnaire.  Available in Spanish and English. Translators for other languages.  Basic demographics.  Self-reported health history and stage of infection.  Benefits and insurance (to determine eligibility).  History of care (in part to determine unmet need).
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H-CAP Survey (Cont)
Co-morbidities (homelessness, STDs, mental illness). Drug use. Medication and adherence. Service awareness, need, demand, utilization, and satisfaction. 44 services that are mapped to Continuum of Care.  Barriers.  Special topic: prevention for positives.    
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Survey – Need Grid
Mental Health
For each mental health service below…
A
B
C
D
E
Are you Did you Did you Did you IF RECEIVED aware that need this ask for this receive this THE the service service in service in service in SERVICE, did exists? the past the past the past this service year? year? year? meet your need?
Yes 10 Residential mental health services. 11 Individual mental health therapy or counseling sessions by a psychiatrist, psychologist, or social worker.
No
Yes
No
Yes
No
Yes
No
Yes
No
1 1
2 2
1 1
2 2
1 1
2 2
1 1
2 2
1 1
2 2
For the mental health services noted above, what problems did you experience in accessing or using the service? (SEE PROBLEM HANDOUT ON THE LAST PAGE OF THE QUESTIONNAIRE. WRITE IN PROBLEM OR USE LETTER BESIDE EACH PROBLEM ON THE PROBLEM HANDOUT.)
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Survey – Barrier Grid
Below is a list of problems that you may have had when trying to obtain or use HIV/AIDS services. Mark an X on the line beside each item to say how big a problem it has been for you. The line goes from a “very small” to a “very big” problem. If you have not had the problem at all, circle “0”.
A “very small” problem caused you minor concern and delays in obtaining the service(s). A “moderate” problem means that you faced substantial problems but that you were able to get the service most of the time. A “very big” problem means that it stopped you from getting the service(s).
Not a problem p. I have been denied or have been afraid to seek services due to a criminal justice matter. q. Fear of my HIV or AIDS status being found out by others – lack of confidentiality.
0
Very Small
Small
Moderate
Big
Very Big
_______|_______|_______|_______|_______
0
_______|_______|_______|_______|_______
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Survey Methods
Participant can complete the survey using three methods: 1. In-person interview
 Interviewer meets respondent at an agreed upon location or when completing focus group.  20% to 30% of the surveys expected to be completed in-person.  To date 12% have indicated interest.
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Survey Methods: Telephone
2. Telephone interview
 Participant calls toll-free number to H-CAP interviewers or H-CAP interviewers call using screening sheet info.  45% - 50% of surveys expected to be completed by phone.  To date over three-quarters of interviews done by phone.
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Survey Methods: Web-based
3. Online Survey
 Participant logs into PCH website where there is a a link to the survey.  Enters confidential ID.  Can complete it over several sessions.  Expected 20% - 35% completion by web.  To date about 2% have been done on-line.
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Web-Based Survey
 By invitation from recruiting. Not general access, but controlled to insure sample integrity.  Designed using SPSS Enterprise Web Server – migrating to SPSS Dimensions Interview.  SSL protocol to manage the security of message transmission on the Internet. The SSL protocol utilizes the HTTPS (Secure Hypertext Transfer Protocol).
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Web-Based Survey (cont)
 The survey site is authenticated by Thwate who provides a digital certificate to PCH that assures that the site is checked for security.  SSL and HTTPS requires a password and user ID provided to the participant.  Data transmission encrypted.  Modeled after commercial Internet providers who need to secure financial transactions.
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Advantages of Web-Based Survey
 Telephone interviewers use web survey resulting in direct data entry.  Data entry staff enters data into web application from paper interviews.  Live up-to-date database that allows analysis of most current data. To date these advantages have not been realized and H-CAP moving to MrInterview a more robust web survey software.
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Response Rate
 Because not all refusal forms have been tabulated, refusal rates of all those contacted has not been calculated.  In three months about 360 screening forms collected and over 200 interviews completed.  There is a refusal rate of less than 2% among those who completed the screening forms.
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Sample: Race & Gender
N = 207 respondents as
Race/Ethnicity N= Anglo African American Latino / Hispanic Asian/Pacific Islander Am Indian/Alaska Nat Other/NA Gender Male Female 86.6% 13.4% 68.1% 31.9% 75.5% 24.5% 44,613 30.6% 24.9% 40.8% 2.4% 0.6% 0.7% Epi (6/03) Goal Oversample of 8/8/04 825 27.6% 30.7% 27.6% 8.8% 3.1% 2.5% Survey (8/04) 210 16.3% 26.9% 40.4% 2.9% 3.8% 10.6%
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Sample: Risk Group & State of Disease
Epi (6/03) Risk Group MSM IDU MSM / IDU Hetero Other / NA Stage of Disease Diagnosed with AIDS (self report) 43% 50% 67.9% 10.1% 6.1% 13.9% 1.3% 47.9% 8.0% 13.5% 30.7% NA Survey (7/04)
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Analysis: Key Populations
Total
• Gender • Ethnicity / Race • Stage of Infection
Special Populations
• Homeless • Non-IDU Substance Users • Mental Illness (persistent) • Recently Incarcerated • Undocumented • Youth^ (13-19 years)
RISK GROUPS
• MSM - MSM of Color • IDU • MSM-IDU • Hetero
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Focus Groups
 60- to 90-minute discussion groups in which numbers of high-risk populations talk about specific topics.  Focus groups moderated by professionals.  In-depth topics in 2004 will be needs, gaps and barriers to accessing services by: • African Americans • • • Latinos Out-of Care Men who Have Sex with Men and Women
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Focus Group Logistics
 Focus group participants are selected from pool of H-CAP recruits based on screening form and HCAP staff follows-up.  Held at venues that are easily accessible by mass transportation.  Day care, transportation, and other logistics are arranged by H-CAP staff.  Participants receive a $20 food voucher for participating.  Focus groups are taped and transcribed.
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Focus Group Outline
 Outlines are detailed with both the question and the concept.  Moderators lead a discussion rather than a question and answer format.  Initial questions regarding sensitive areas like drug use and incarceration tend to open the discussion.  To determine need open end questions followed by prompts and lists so everyone has a common understanding of the process.
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Focus Group Outline
3. You are all [FILL IN COMMON GROUP Community FEATURE]. What groups or communities do you belong to? Do they affect the way you seek and receive HIV/AIDS Care? 4. Just a show of hands – how many of you are in recovery or currently using substances? (Moderator verbalize response) Substance use
5. Again, just hands, how many of you have had Recently contact with prison or jail system in the past five or incarcerated six years? (Moderator verbalize response) 6. What are the most important HIV/AIDS services that you need to maintain or improve your health status? Do you receive it? Service need
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Focus Group Sessions
 Everyone in the group must agree to taping before recorder is turned on.  Participants are instructed to say their first name before a comment so they can be identified in when listening to the tape.  Moderators have a good deal of discretion about the order questions are introduced and prompts.  Moderators are instructed to verbalize non-verbal actions by participants so it is included in the analysis.
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Analysis: Survey
SPSS is used to analyze data.
 For quarterly analysis, risk groups, race, and sex are used to weight data back to their populations estimates.  Cross tabulations of services, barriers, and behaviors on key populations.  Multidimensional scaling to determine types of barriers.  Graphs are used for presentations where it makes trends or data easier to understand.  To validate findings results are compared to other data sets and with published data.
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Analysis: Focus Groups
Focus groups were transcribed and coded for barriers and services.
 Transcriptions put in Excel database.  Quotes sorted by demographics, services, and barriers.  Quotes supporting the statistical findings or showing strong views that were contrary to findings are presented.
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Data: Top Service Needs
100% 90% 80% 70%
% PLWH/A
Primary Health Care Core Removal of barriers Patient care coordination & language services Enhancement services
60% 50% 40% 30% 20% 10% 0%
OutNutrl Referl HIV EFA : OutFood Bus Ind Food Mental Taxi Pymt - Med CM ed & re: prev by not patnt patnt Dental pntry pass hsing vouch Hlth vchr meds CM speclt cnsel dretry Dr rnt/util Med 91.2% 76.0% 70.4% 72.0% 67.1% 66.3% 65.4% 38.3% 55.3% 53.6% 39.0% 38.3% 52.9% 46.1% 49.8% 14.2% 97.6% 89.8% 82.5% 79.2% 78.3% 72.8% 71.7% 71.7% 68.1% 63.9% 61.5% 60.9% 59.4% 59.4% 59.2% 56.7% Peer Hme EFA: suppt & del rnt/util cnsling meal
Nutrit suppl
Ask Need
25.9% 40.7% 39.5% 30.9% 54.9% 52.7% 50.5% 50.2%
Receive 96.1% 64.3% 68.0% 71.4% 70.0% 46.1% 58.3% 25.4% 58.9% 51.7% 39.5% 30.6% 56.0% 48.5% 74.1% 10.3% 15.5% 36.8% 36.6% 26.5% 95.9% 88.5% 85.8% 97.9% 86.2% 89.4% 85.8% 84.0% 93.4% 92.5% 97.5% 96.8% 95.6% 95.0% 96.7% 81.8% 93.1% 94.8% 88.5% 94.5% Met Aware 99.0% 96.1% 94.2% 93.2% 91.8% 95.6% 92.2% 69.3% 93.7% 96.1% 70.7% 80.2% 87.5% 74.8% 97.6% 42.4% 56.3% 88.2% 93.2% 82.4%
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Data: Moderate Needs
100% 90% 80% 70%
Primary Health Care Core Removal of barriers Patient care coordination & language services Enhancement services Economic well-being
% PLWH/A
60% 50% 40% 30% 20% 10% 0%
Legal Hsing info 41.7% 49.5% 32.5% 85.1% 80.7% IEC 40.0% 48.8% 47.3% 96.0% 90.7% Clnt Advcy 23.2% 46.1% 20.1% 82.9% 56.6% Rntal Subsdy 16.7% 45.1% 10.3% 76.2% 40.2% Van transp 24.5% 39.0% 19.7% 92.7% 72.3% Wrkfrce (re)entry 17.6% 38.7% 8.8% 88.2% 70.8% Adhrnc meds 24.6% 35.7% 24.6% 96.2% 73.4% Grp MH Spitual thrpy/cnsl Advice advce 24.0% 18.1% 35.1% 20.3% 14.7% 90.7% 96.8% 84.0% 62.4% Bdy /Cmpnion Bus tokensHome hlth 11.2% 28.9% 6.9% 66.7% 62.0% 19.9% 28.5% 15.2% 86.7% 85.0% 18.3% 24.6% 15.5% 86.5% 80.2%
Ask Need Receive Met Aware
35.6% 49.8% 27.5% 83.3% 85.4%
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Data: Low Service Needs
100% 90% 80% 70%
Primary Health Care Core Removal of barriers Patient care coordination & language services Enhancement services Economic well-being
% PLWH/A
60% 50% 40% 30% 20% 10%
Fmly/cpl Emgcy Trans hsing thrpy 9.7% 11.7% Ask 19.7% 18.0% Need 7.2% 10.2% Receive 100.0% 95.7% Met 75.8% 81.3% Aware
0%
Asst: re Hlth ins 5.4% 17.7% 3.9% 88.9% 37.1%
Res MH 5.3% 13.0% 4.8% 83.3% 66.5%
Transl /Interp 8.8% 12.7% 8.8% 94.7% 62.3%
Asst or grp Outpant t Res SA Hsing sppt SA& cnsling& cnsling 8.7% 8.2% 9.1% 12.1% 11.1% 10.1% 7.2% 7.2% 8.7% 94.1% 100.0% 88.9% 70.1% 75.4% 76.7%
Day care: chldrn 4.5% 6.9% 2.5% 71.4% 54.0%
Hospice: Detox/mthd hme/resid mtnce 2.9% 3.8% 5.8% 5.3% 3.8% 4.3% 80.0% 100.0% 77.8% 77.8%
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Data: Ask- Receive Gap
HIV prevention by Dr IEC Outpatient Medical Peer suppt & cnsling EFA : not rnt/util Buddy/Compnion Nutrit suppl Bus tokens Van transp Rntal Subsdy Outpatnt speclt
Receive more than ask
Taxi vchr Legal Wrkfrce (re)entry Hsing info EFA: rnt/util Dental Food vouch Ind hsing
Ask more than receive
-25%
-20%
-15%
-10%
-5%
0%
5%
10%
15%
20%
25%
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Data: Top Barriers
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A w ar en es s of A w
% PLWH/A with Problem
10% 20% 30% 40% 50% 0%
a ar vai U en l o na es f t w rt s ar of m n e t of l Ph oca w ho tio y n to sic as al h k U fo lth nd r er R hel st ed p an -T St di ap ng ate e I n of m s In in su tr f or d ra nc tr tm e A t ffo co ve rd ra in ge Tr g s an er sp vic e R o N av ule rta ti s ig an on at in d r W gt he egs ai tin sy Pr g ro ste ov om m id er tim no e th el pf ul
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1=very small to 5=very big
1.0
1.5
2.0
2.5
3.0
3.5
4.0
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Mean height
Focus Group Analysis Transcribed in Excel format
Quote
pu o G r
r e dne G
goe G
eg A
p g ks R r i
y i c nh E t i t
AA Men
M
AA
49
LAC
IDU
199 DN0 I'm messed up. I can tell you that. Its messed peer 0 518 up man. I've been doing this since 1990 and things are starting to happen and M now thatmy problems are with the medication. most of
I just turned 50 a couple of weeks ago, so I'm trying to determine what's old age and what's the disease because I don't even know the difference. Things just happen and I don't think there's any way to be mentally prepared for it. I mean I do a lot of groups and things, but its to a point where mentally, I am just a mess everyday I wake up because I don't know what's doing what. All I know is that I'm not me. 1983 ES06 I'm kind of riding on a pink card right now mh 28N because the majority of my (inaudible) status I was a horrible drug user and I've been clean for three years now. My life was just like (inaudible) for a spiritual connection. (inaudible) I thank God, now that I've been so busy that my psychiatrist thinks who think I should still consider myself bipolar, so I just don't take his medication anymore.
de ce n t f I
ec vr e S i
Side, mh
AA Men M
AA
43
LAC
MSM
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r e rr a B i
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D I
Medical Outpatient Need (2002 data)
 How many of those 33,070 might seek medical care?  50% have no insurance.  Leaving about 16,534 needing some medical care.  IMACS and Casewatch show 53% of the unduplicated 18,312 persons in the system received medical care, or 9,705. Leaving a potential gap of about 6,829 PLWH/A who might access care.  From the NA data 77% received outpatient care, resulting in a gap of about 3,800 PLWH/A.  From the NA data based on expressed need of 82% of PLWH/A there be a gap of about 3,000 PLWH/A
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Conclusions
By adopting an on-going data collection protocol, the process has strong advantages:
 Yield more timely information.  Increasingly reliable sample.  Track changes in needs, barriers, and gap over time.  Clear interface between qualitative/quantitative data.  Be a more cost-effective data collection strategy compared to having specialized needs assessment performed yearly or every other year.
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Considerations
 Lead Time is at least 6-8 months for set-up.  Institutional Review Board:
• Who writes it? • Who manages it? • How much does it cost? • how many institutions have to do it? • How long will it take?
 Costs approaching initially $100 - $120 and interview – declining over time.  Major coordination and tracking efforts.
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Considerations (cont)
 Administrative Agency (AA) Cooperation is necessary for provider contact and communication; AA should monitor/enforce provider participation.  Is a consultant needed, for technical and/or logistical purposes?
• Who manages the survey? • Who conducts interviews? • Who executes and writes analysis?
 Allow for considerable supervisory work for interviewers and field personnel.
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Considerations (cont)
 High level of research skills:
• Random sampling and directed recruitment is the core of the data reliability. • Field supervision of providers is essential. • Data entry and processing on a continuing basis. • Needs survey and focus group design has to match continuum of care.
 Considerable technology knowledge and up-to-date computers and software.  Analysis and presentation expertise using multiple data sources.
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Considerations (cont)
 Research Tensions are part of the process: methodological creativity and implementation will exist between all partners.
• How will it be identified and resolved? • Who is the last word? • What are “deal-breakers”?
 Out-of-Care methodology still does not adequately address how to find and secure the participation of people who are “out-of-care”; a further issue for HCAP to explore
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Your Observations…
 Do you see any deficiencies of areas of improvement or modification in the H-CAP project design?  What would you do to improve the methodology?
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Applicability
 Would this methodology translate to other jurisdictions?  What are the challenges and obstacles to implementing continuous data collection?  What would be the benefits and drawbacks for this type of continuous data collection in your jurisdiction?  How would you use the needs assessment data in your planning, evaluation, and service delivery development?
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Reference
These slides available online at www.pchealth.org and will be available at * www.hivcommission-la.info or contact the Commission at (213) 738-2816
* still under construction
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