1. Identifying effective linkage and retention strategies in NY Links for manualization and dissemination Denis Nash, PhD, MPH Professor, Epidemiology and Biostatistics Program CUNY School of Public Health 1

2. NY Links Evaluation Objectives Evaluate the effectiveness of strategies piloted in collaboratives to improve linkage, engagement and retention in HIV care. – Identify ‘best-practice’ strategies for improving linkage and retention Evaluate the statewide impact of dissemination and scale-up of strategies felt to be most effective at improving outcomes. Participate in and contribute to the multi-state evaluation process. Timeline  Years 1 & 2– Evaluate collaborative activities  Collect/analyze new and existing data on program outcomes, identify best practices for improving linkage and retention for statewide scale-up.  Years 3 & 4– Evaluate impact of statewide dissemination and scale-up  Collect/analyze new and existing data to monitor scale-up of effective linkage and retention strategies across New York State 2

3. Evaluation of collaborative activities: Data sources and methods Outcomes (linkage, engagement, retention, VL suppression) – NY Links Site-based Measures – NY Links Surveillance-based measures Linkage/retention strategies (type, timing) – Evaluation site surveys Analysis methods – Assess influence of linkage and retention strategies on key outcomes Linkage, engagement, retention, and viral suppression Develop a menu of linkage and retention strategies to manualize and disseminate in Years 3 and 4 based on: – Evidence from NY Links evaluation – Evidence outside of NY Links (e.g., literature) * See Lamb et al. PLoS One 2012; Nash et al. AIDS 2011; Nash et al. JAIDS 2009 3

4. Linkage and retention strategies being implemented/evaluated by NY Links providers Existing strategies In place prior to start of NY Links Strategies being tested or newly implemented Tested/evaluated as part of NY Links Fully implemented during NY Links What have we learned thus far regarding linkage and retention improvement strategies being utilized by NY Links providers? 4

5. Baseline Evaluation Survey to assess strategies in place prior to start of SPNS Survey distributed to sites during site visits Completed through online survey tool Areas of focus included: – Types of services provided (HIV testing, supportive services, HIV care) – # of newly diagnosed clients – # of patient/clients accessing clinical care and supportive services – Existing strategies aimed at improving linkage and retention Additionally, new strategies or planned enhancements to existing strategies – Formal and informal partnerships used to increase linkage and retention 5

6. Categories of most common EXISTING* strategies that impact linkage and retention at UMRG sites 6 CategoryMost Common StrategyN (%) Case ManagementMedical case management 18 (13%) Appt Reminders/Follow up Reminder/follow-up phone calls 2) Missed appointment letters 32 (23%) Outreach & Linkage with other organizations Use of Field Services Unit4 (3%) Use of incentives/patient engagement Patient education 2) Provision of supportive services7 (5%) Patient Navigator/Care Coordinator Use of care coordination and/or patient navigation team generally 17 (12%) Combined same day servicesSame day care15 (11%) Streamline/Standardize referralsPatient escort to medical services16 (11%) Tracking those lost to follow-up Outreach (letters and phone calls) to those who have been out of care for >1 month 3 (2%) OtherHome visits; Providing transportation 29 (20%) Total number of strategies141 (100%) Data Source: Baseline Evaluation Survey, updated: May 11, 2012 Existing strategies are those that were in place prior to Nov 1 st, 2011 and start of UMRG collaborative

7. CategoryMost Common existing strategiesN Case ManagementCase management generally; Social worker calls patient 13 Appt. reminders/Follow up Phone call and letter reminders10 Supportive servicesSupportive services generally; Medication management 7 Same day servicesWalk-in appointments3 On-site servicesComprehensive services all in one location generally; On-site supportive services 4 Other1)Peer education/outreach; 2) linkages w/other organizations; 3) tracking those out of care; 4) care coordination; 5) consumer committees 18 Data Source: Evaluation baseline site survey, updated: August 31, 2012 7 Overall categories of most common EXISTING linkage and retention strategies for WNY sites

8. Intervention Strategy Tracking Tool (to track linkage and retention strategies newly tested or implemented during NY Links/SPNS) Purpose of Intervention Strategy Tracking Tool: – Capture information on new strategies being tested and implemented to increase linkage to and retention in care – Connect the testing and implementation of new strategies to the PM data results – Develop of a compendium of successful linkage and retention strategies Frequency: every two months Domains: -Types of strategies tested -Intended impact of strategies -Populations targeted - Strategy coverage/fidelity -Use of Plan-Do-Study-Act (PDSA) cycles -Challenges/barriers to success -Outcomes 8

9. UMRG preliminary results: types of strategies being tested or implemented Strategy category# of strategies# of sites reporting Developing tracking systems to measure linkage/retention 32 Tracking/engagement of those out of care33 Outreach and linkage w/ other organizations11 Case management/Patient navigation22 Streamlining/standardizing referrals43 Other (includes staff engagement, self management and same day services strategies) 32 No strategies tested or implementedN/A5 Number of sites not yet know what strategies are being tested/implemented N/A5 Data Source: Intervention Strategy Tracking Tool, UMRG— August 28, 2012 9 Total number of sites known to be testing or implementing strategies: 9 Data excludes 5 sites whose participation status in NY Links is undetermined. NY Links coaches have detailed description of strategies.

10. Existing and new SPNS interventions/strategies and the evidence base: What’s next? Mapping interventions/strategies to improve linkage and retention in SPNS to the evidence base – Will review as a group at future learning sessions in the hopes of assisting sites in deciding which interventions/strategies to try Today’s webinar is intended to initiate and inform a longer discussion on SPNS linkage and retention strategies – Tested and evaluated in Y1 and Y2 – Manualized and disseminated in Y3 and Y4 10

11. Michael J. Mugavero, MD, MHSc University of Alabama at Birmingham January 8, 2013

12. HPTN 052 Press release, May 12, 2011 96% reduction in new HIV infections

13. Moore RD & Bartlett JG. Clin Infect Dis 2011;53:600 Johns Hopkins HIV Clinical Cohort

14. Adapted from: Gardner et al. Clin Infect Dis 2011;52:793, Cohen et al. MMWR 2011;60:1618 HIV Treatment Cascade 49%

16. Ulett et al. AIDS Pt Care STDS 2009;23:41-49, Mugavero et al. Clin Infect Dis 2011;52(S2). 1 2 3

17. Adapted from: Mugavero et al. Clin Infect Dis 2011;52(S2)

18. National HIV/AIDS Strategy Increase linkage to care w/in 3 months of Dx from 65% to 85% Increase HIV serostatus awareness from 79% to 90% Increase RW clients in continuous care from 73% to 80% Increase proportion of HIV Dx’d persons with undetectable VL by 20% Ulett et al. AIDS Pt Care STDS 2009;23:41-49, Mugavero et al. Clin Infect Dis 2011;52(S2).

19. Factors Linked to Poor Engagement Younger age Female sex Racial / ethnic minority Lack of health insurance Mental illness Substance abuse Unstable housing Unmet needs for supportive services Passive referral to care HIV testing in community setting Keruly et al. AJPH 2002;92, Robbins et. al. JAIDS 2007;44Giordano et al. Clin Infect Dis 2007;44, Mugavero et al. JAIDS 2009;50, Metsch et al. Clin Infect Dis 2008;47, Hall et al. JAIDS 2012;60

20. Implications of Poor Engagement Individual Level – Delayed ART receipt & ART non-adherence – Inferior CD4 count & viral load outcomes – Emergence of HIV resistance mutations – Increased risk for clinical events & mortality Population Level – Mediator of health care disparities – Role in transmission  PwP Change in risk transmission behaviors Impact of ART in reducing transmission Keruly et al. AJPH 2002;92, Robbins et. al. JAIDS 2007;44, Park et al. J Intern Med 2007;261, Giordano et al. Clin Infect Dis 2007;44, Mugavero et al. JAIDS 2009;50, Marks et al. AIDS 2006;20, Metsch et al. Clin Infect Dis 2008;47, Cohen et al. N Engl J Med 2011;365

21. Adapted from: Gardner et al. Clin Infect Dis 2011;52:793, Cohen et al. MMWR 2011;60:1618 COMMUNITY CLINIC

22. Thompson MA et al. Ann Intern Med 2012;156:817-33 37 Evidence-based recommendations  5 Recommendations for linkage and retention  Emphasis on special populations  Recommendations for future research

23. Quality of Body of Evidence Interpretation Excellent (I) RCT evidence without important limitations Overwhelming evidence from observational studies High (II) RCT evidence with important limitations Strong evidence from observational studies Medium (III) RCT evidence with critical limitations Observational study evidence without important limitations Low (IV) Observational study evidence with important or critical limitations Strength of Recommendation Strong (A) Almost all patients should receive the recommended course of action. Moderate (B)Most patients should receive the recommended course of action. However, other choices may be appropriate for some patients. Optional (C)There may be consideration for this recommendation on the basis of individual patient circumstances. Not recommended routinely.

24. Evidence-Based Recommendations: Entry into and Retention in Care Systematic monitoring of successful entry into HIV care recommended for all individuals diagnosed w/ HIV (IIA) Systematic monitoring of retention in HIV care is recommended for all patients (IIA) Brief, strengths-based case management for individuals with a new HIV diagnosis is recommended (IIB) Intensive outreach for individuals not engaged in medical care within 6 months of a new HIV diagnosis may be considered (IIIC) Use of peer or paraprofessional patient navigators may be considered (IIIC) Thompson MA et al. Ann Intern Med 2012;156:817-33

25. Brief, strengths-based case management for individuals with a new HIV diagnosis (IIB) 1 Gardner LI et al. AIDS 2005;19 CDC ARTAS 1 : Multi-site RCT to test linkage case management (CM) vs. SOC to improve linkage to care  Empowerment & self efficacy  Asks clients to identify internal strengths & assets  Up to 5 CM contacts allowed in 90 days 78% linkage to care w/in 6 months in CM group vs. 60% in SOC group (P<0.01) High (II): RCT evidence w/ limitations Strong evidence from observational studies Moderate (B): Most patients should receive Other choices may be appropriate for some

26. Gilman. AIDS Pt Care STDS 2012;26  Case study of 7 LTC programs in 5 jurisdictions  Barriers: System/Community, Organizational, Clinician/Staff, Individual/Client “One of the key findings of this study is that LTC programs vary widely based on the needs, resources, partnerships, organizational structures, leadership, target populations, and policies of each setting”

27. Key characteristics: Low cost Paraprofessional staff Intensive Significant time investment Time- limited LTC services of short duration Unique Distinct from medical case management Flexible Tailored to community needs/resources LTC: testing in non-primary care settings Gilman. AIDS Pt Care STDS 2012;26

28. Core components: Dedicated linkage staff Training in MI counseling, HIV, & local healthcare and HIV resources Active referral Client education and skill building, assistance scheduling / attending visits Person- centered Focus on client “assets” Cultural concordance Cultural and linguistic concordance of linkage workers with population served LTC: testing in non-primary care settings Gilman. AIDS Pt Care STDS 2012;26

29. Operational factors: Protocol adherence Developing and adhering to LTC protocol Selection of LTC staff Personality, cultural background, experience and interpersonal skills Execution of LTC program Coordination & integration of services across and w/in organizations Program sustainability Coordination of federal, state, local resources from multiple funders LTC: testing in non-primary care settings Gilman. AIDS Pt Care STDS 2012;26

30. Case Manageme nt Standard of Care P-value 6 months 78%60%<0.01 Gardner et al. AIDS 2005;19  Linkage case management efficacious, but early retention in care a formidable challenge… 12 months 64%49%<0.01 ARTAS: Early retention in care

31. Intensive outreach for individuals not engaged in medical care w/in 6 mos of a new diagnosis (IIIC) Recommendation based upon HRSA SPNS initiative 1  A series of observational studies with comparators that measured behavioral and biological outcomes  Outreach recommendation based on 1 study (n=104) Intensive outreach improved retention in care and HIV-1 RNA suppression in pts underserved by health system  Youth, women, mental health, substance abuse Medium (III): RCT evidence w/ critical limitations Observational evidence w/o limitations Optional (C): Consideration based on individual circumstances Not recommended routinely 1 Naar-King S et al. AIDS Patient Care STD. 2007;21 Suppl 1

32.  10 Demonstration projects – Non-randomized design without comparison or control groups in most studies – Focus on linkage to care, retention of sporadic users & re-engagement of pts LTFU  Conceptual framework: IOM barriers to care: – Structural barriers – Financial barriers – Personal / Cultural barriers  Individual site & multi-site mixed methods evaluation Tobias et al. AIDS Pt Care STDS 2007;21:S3, Rajabuin et al. AIDS Pt Care STDS 2007;21:S9 HRSA SPNS Outreach Initiative

33.  Study sites: – Community based organizations = 7 – Community based health centers = 2 – Hospital based clinic = 1  Heterogeneous approaches & samples: – Behavioral interventions – Intensive case management – Health literacy and life skills – Outreach in provision of medical services – Supportive services included in 8 of 10 programs Tobias et al. AIDS Pt Care STDS 2007;21:S3, Rajabuin et al. AIDS Pt Care STDS 2007;21:S9 HRSA SPNS Outreach Initiative

34.  On balance, interventions were effective  Structural, financial & personal barriers common, and highly correlated with retention – Reduction in barriers  improved retention  Factors associated with loss to follow-up (29%) – Illicit drug use – Unstable housing – Unmet supportive service needs HRSA SPNS Outreach Initiative Bradford. AIDS Pt Care STDS 2007;21:S85

35.  Barriers to HIV care can be reduced or removed with sufficient resources  Coaching, skill-building, knowledge gains, respectful trusting relationships b/t client and outreach worker facilitate HIV care utilization  Additional resources and system changes needed for most disadvantaged persons  Outreach interventions can be implemented to comply with research standards Bradford. AIDS Pt Care STDS 2007;21:S85 HRSA SPNS Outreach Initiative

36. 1 Bradford JB et al. AIDS Patient Care STDS. 2007;21 Suppl 1 Recommendation based upon HRSA SPNS initiative 1  A series of observational studies with comparators that measured behavioral and biological outcomes  PN rec based upon 4 studies (n>1100 pts) PN associated w/ increased retention in care from 64% to 79% and 50% increase in HIV-1 RNA suppression @ 12 months Use of peer or paraprofessional patient navigators may be considered (IIIC) Medium (III): RCT evidence w/ critical limitations Observational evidence w/o limitations Optional (C): Consideration based on individual circumstances Not recommended routinely

37.  Patient navigation shares features w/ advocacy, health education, case management  Distinctive features: – Concerned with individuals vs. system – Less proactive in addressing knowledge gaps – Principles of CM, but no “ home agency ” – Apply strengths-based principles w/o BSN or SW – Peers or near-peers with shared cultural background Bradford. AIDS Pt Care STDS 2007;21:S49 HIV system navigation

38. Comparative evaluation of monitoring strategies in conjunction with intervention studies Comparison of retention measures with one another Operational research to optimize and standardize measurement Comparative evaluation of CM in community settings Comparative evaluation and cost effectiveness for best practices for implementation of CM interventions Comparative evaluation of other intervention approaches: peer support, patient navigation, health literacy, life skills Prospective evaluation of pay for performance Future Research Recommendations Thompson MA et al. Ann Intern Med 2012;156:817-33

39. Mugavero et al. Clin Infect Dis 2011;52(S2). Feedback loop: An approach to monitor & implement engagement interventions Systematic monitoring

40. Thank you!

41. What’s next in SPNS/NY Links? Mapping SPNS linkage/retention interventions/strategies to the evidence base – To be jointly reviewed at next learning session Develop a menu of linkage and retention strategies to manualize and disseminate in Years 3 and 4 based on: – Evidence from NY Links evaluation – Evidence outside of NY Links (e.g., literature) Discussion questions: – Of the IAPAC evidence-based linkage and retention strategies/interventions: Which ones are you already implementing? Do you use a manual/protocol? Which ones are you considering implementing? – Which other linkage and retention interventions are you implementing? Do you use a manual/protocol? 41

42. Upper Manhattan Regional Group Important Next Steps Next Learning Session January 23, 2013 at 8:30am CUNY School of Public Health at Hunter College Tracey E. Wilson, PhD, Professor, Department of Community Health Sciences, SUNY Downstate Medical Center, School of Public Health will present on "A Low-Effort, Clinic-Wide Intervention Improves Attendance for HIV Primary Care," published in Clinical Infectious Diseases in October, 2012. Lightning Rounds Power Point Templates (Past Due) Agencies will be have 3-minutes at the upcoming meeting to share these slides describing a strategy that they have implemented in the past year and how it has positively impacted linkage and retention in primary care for clients/patients Next Data Submission February 1, 2013

43. Western New York State Important Next Steps Wednesday, January 9 th Buffalo Collaborative Meeting at Evergreen Health Services Thursday, January 10 th Rochester Collaborative Meeting at AIDS Care Next Data Submission February 1, 2013

44. Queens and Staten Island Important Next Steps Please contact one of the following NY Links staff to schedule your introductory visit if you have not yet done so: Steve Sawicki, svs03@health.state.ny.ussvs03@health.state.ny.us Johanna Buck, johanna_buck@att.netjohanna_buck@att.net Lenee Simon, Lsimon1@health.nyc.govLsimon1@health.nyc.gov Please attend one of the following timeslots for the introductory webinar if you have not yet attended one: Friday, January 11 at 1:00pm Tuesday, January 15 at 10:00am Thursday, January 17 at 3:00pm