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Engaging Hard-to-Reach Populations in HIV Care: Outreach


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A tremendous need exists to engage hard-to-reach populations in HIV/AIDS care. That’s because numerous factors prevent people living with HIV/AIDS (PLWHA)—especially disadvantaged and disproportionately affected populations—from engaging in care or remaining in care.

This Webcast introduces providers to several successful strategies for reaching the most vulnerable populations:

Howell Strauss, DMD, AIDS Care Group, discusses traditional street outreach, as well as his involvement with both the SPNS Oral Health Initiative and the SPNS Jail Initiative.
Lisa Hightow-Weidman, MD, MPH, Department of Infectious Diseases University of North Carolina at Chapel Hill, shares best practices in social marketing outreach in the context of her work as a SPNS Young Men who Have Sex with Men of Color Initiative grantee.

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Engaging Hard-to-Reach Populations in HIV Care: Outreach

  1. 1. Engaging Hard-to-Reach Populations: Outreach Webinar Series April 18, 2013
  2. 2. Agenda  Brief introduction to the new SPNS IHIP project (Sarah Cook-Raymond, Impact Marketing + Communications)  Presentations from SPNS grantees on using data to improve outreach  Howell I. Strauss, DMD; AIDS Care Group  Lisa Hightow-Weidman, MD, MPH; University of North Carolina at Chapel Hill  Q &A  Very brief post-Webinar questionnaire
  3. 3. Introducing IHIP… SPNS recently launched the “Integrating HIV Innovative Practices” (IHIP) project. IHIP takes innovative findings from SPNS initiatives and assists health care providers in replicating proven models of care. The result? Improved care delivery and healthier patients.
  4. 4.  Lessons learned from across SPNS initiatives have been distilled into engaging hard-to-reach educational materials.  Other IHIP products exist and more are rolling out.  To access IHIP materials, visit
  5. 5. “Engaging Hard to Reach Populations” Howell I. Strauss, DMD AIDS Care Group Chester, PA
  6. 6. From the National HIV/AIDS Strategy (2010): The United States will become a place where new HIV infections are rare and when they do occur, every person, regardless of age, gender, race/ethnicity, sexual orientation, gender identity or socio-economic circumstance, will have unfettered access to high quality, lifeextending care, free from stigma and discrimination.
  7. 7. Dr. Jonathan Mann in addressing the HIV epidemic in developing nations asked, “Do we need more doctors, nurses, and clinics? Or, do we need to address other basic societal issues, such as human rights and issues surrounding poverty.” (Johns Hopkins Clinical Care Conference, March 1997)
  8. 8. Major DECLINE in the Implementation Cascade
  9. 9. “America works best when the poor achieve their dreams.” Former President Bill Clinton, Democratic National Convention July 2004
  10. 10. Since 1997, over the next 15 years: The gaps between rich and poor, privileged and needy, and insiders and outsiders have grown into chasms.
  11. 11. One in five children in our country is living in poverty. There are fewer jobs and there are more abandoned homes. There is more food insecurity. There are more teen-age pregnancies.
  12. 12. STDs are the leading infectious diseases. There is more substance abuse, and the criminal justice system is one of the best growth industries in America.
  13. 13. Through our clinical diligence, there are fewer opportunistic infections. But, there is more hepatitis C.
  14. 14. These issues which could set the stage for another wave of HIV in our cities, and now more than 15 years since discussions of societal determinants of health were discussed by Dr. Mann, have come to be the presenting problems as we embark on our efforts to implement a National HIV/AIDS Strategy - with one goal to reduce new infections by 25% over the next 4 years. We are two years into the Strategy and we have not made significant inroads.
  15. 15. If, we are to be instrumental in helping to meet the goals of the National HIV Strategy of the United States; Then, finding, linking, and retaining hard to reach populations should become a high priority. And, all factors (including medical and non-medical or social issues) that are barriers to the achievement of goals should all get equal weight and attention.
  16. 16. Social and medical factors affecting individual and community health are very prominent in the “hardto-reach target population” There is poverty, joblessness, homelessness, and despair. Clients found to be living with HIV disease can also present with substance abuse behaviors and/or mental health conditions.
  17. 17. Within the AIDS Care Group 96% live at or below the federal poverty line. 40% of clients have an incarceration history. 35% have hepatitis C. 20% of the clients seen for medical care and services do not have clean, safe, or affordable housing.
  18. 18. The Hook is Food Poverty and hunger are pervasive in Chester’s central business district. Without a poster advertising the opening of the Drop-in-Center, the knowledge of a morning breakfast center became instantly well-known. Clients came to expect that food and an educator were on-site.
  19. 19. The distribution process was linked to medical care. “Please come for food and at the same time get all of your immunizations up to date.” Staff were onhand all-day long to provide immunizations, Paps, or other needed health care services.
  20. 20. Transportation was added as a service in 1999. As a resistor to care, transportation was listed in the top three by clients. AIDS Care Group staff found vehicles and programs to support transportation services. Our motto became “We’ll come and get you”.
  21. 21. The message has always been: “Know your clients”. Clients have grown with the agency. The agency’s board is consumer driven. Since the first board meeting in January, 1998 the president and one additional officer have been consumers. Clients are consumers, patients, staff members, volunteers, peer educators, and ambassadors. They help themselves, their families, and their community.
  22. 22. Clinical Care The AIDS Care Group was meant to be a clinically-based organization. It is now a clinical and social-services based organization where the clinical care division is busy due to efforts through outreach to keep clients linked to their providers.
  23. 23. Increase Access to Care and Improve Health Outcomes for People Living with HIV: – Establish a seamless system to immediately link people to continuous and coordinated quality care when they learn they are infected with HIV. – Support people living with HIV with cooccurring health conditions and those who have challenges meeting their basic needs, such as housing.
  24. 24. As clinicians in ambulatory settings we are in the business of health; and we tell patients, “go home to heal.”
  25. 25. When health care is oriented toward doctors and hospitals, the natural tendency is to hold them accountable. When the responsibility gravitates toward the home, who, but the patients are responsible for preventing or managing disease? And who gets blamed when they fail?
  26. 26. The outcomes of self-care include quality of life, adherence, access to care, and better attainment of signs of improving biomarkers such as CD4, viral load, and cognitive status.
  27. 27. Self-care, by definition, is a multidimensional concept that refers to the knowledge, attitudes, and behaviors that clients develop, nurture, or perform to manage a health problem or enhance a health attribute. Instrumental in this model are three identified components: the patient, the provider, and the structural setting (i.e. the home).
  28. 28. (Client) (Customer) (Consumer) (Patient) as central to the strategic plan to link persons to care Who are our clients? What do our customers want? What do our consumers think about us? What should our patients think about us? How do we get there?
  29. 29. The Patient HIV/AIDS epidemic continues to grow among traditionally underserved and hard to reach communities. Communities of color, women and substance users are an increasing part of the HIV/AIDS epidemic. Nationally, and particularly through CARE Act programs, we are taking care of people whom society has traditionally ignored: ex-offenders, the homeless, women who are dependent on welfare, people with substance abuse problems, and other disenfranchised communities that have been affected with HIV/AIDS. Patients enter into care with multiple co-morbid conditions.
  30. 30. Uninsured Individuals by Household Income
  31. 31. Multiple “Customers” This makes the job even tougher For instance, of all uninsured patients – 11% are substance abusers – 5% are homeless – 2.5% are HIV positive Johnson & Johnson / UCLA Health Care Executive Program
  32. 32. “Census: Poverty rose by million” Washington: The number of Americans in poverty and without health insurance each rose by more than 1 million in 2003, the Census Bureau reported Thursday. The number of Americans in poverty rose by 1.3 million to 35.9 million, or one in eight people (USA Today, August 2004). By 2010 the number of Americans living in poverty had grown to 46.2 million. In 2013 one in six Americans is living with food insecurities.
  33. 33. “A death sentence no more” Jane Eisner, The Philadelphia Inquirer, Sunday, September 5, 2004 Many fatal diseases have become treatable conditions that people can live with for years. But the progress brings ethical and social challenges. Diseases such as diabetes, cancer, Alzheimer’s, and AIDS will no longer be considered an immediate death sentence.
  34. 34. Today, a 22 year old male living with HIV is expected to live an additional 57 years; to have a life expectancy of 77 years (Anthony Fauci, MD at the IAC 2012)
  35. 35. Structural Issues - The Setting Surprisingly, not much is being done to improve the socioeconomic dimension of self-care such as the settings, outside of the outpatient setting. Housing is not usually a “provided service” in the outpatient setting. As a result, patients are empowered with great knowledge and skills, but left to go back on the streets – facing a multiplicity of setting problems such as food or housing instability.
  36. 36. National HIV/AIDS Strategy of the United States-2010 Strategies built upon: 2007-Initiative by the Special Projects of National Significance Social Determinants of Health Poverty Crime Housing, food, and employment insecurities Threats of substance abuse Structural, provider, and client inputs regarding access to health care and health
  37. 37. The Simple Description to Finding, Linking, and Retaining Clients in Care: Hands-on Service Oriented Small Scale Dependent on Intensive Medical and Social Service Case Management
  38. 38. Complicating a Simple Description Services, for instance, may need to be targeted to county jails. Prisoners known to be living with HIV disease will need re-integration services. Prisoners should ideally be identified before release to effectively plan for and carry out comprehensive discharge and reintegration services. Outreach staff should utilize psychosocial, substance abuse, and psychiatric assessments; intensive case management; transportation, food, and shelter assistance; and phone cards during the reintegration process to help insure adherence to HIV medical care and reduce recidivism.
  39. 39. Reality check: No Identification No birth certificate No insurance No housing Where do you start with relapse prevention facing protracted obstacles like these?
  40. 40. Can clinicians deal with these urgent problems (needs/demands)?: Lack of available jobs ID Housing instability Food insecurities
  41. 41. Linkage to Social Support Services: Are They Case Management or Clinical Management Issues? Why is Case Management (Patient Navigation) often the “horse pulling the cart?” Determine the functional level of the client; then ask: Would clinicians have patients to serve if there were no patient navigators keeping clients in care?
  42. 42. Our work in linking clients into care; and retaining clients in a comprehensive and adherent HIV clinical program, is only as good as the weakest link.
  43. 43. SO WHAT???? Is the presence of outreach services; patient navigation or case management the solution to finding, linking, and retaining clients into durable and adherent HIV medical care?
  44. 44. Juggling Needs Client needs Provider needs
  45. 45. Formal and Learned Provider View of Client Needs 1. Housing 2. Transportation 3. Food 4. Medical care 5. Clothing 6. Identification 7. Benefits
  46. 46. CLIENT NEEDS – as perceived by the client SEX Cigarettes Drugs – or old behaviors Food Housing Transportation SEX Phone SEX Identification Benefits Medical care
  48. 48. Develop relationships that keep clients linked into social services Meet people on their turf, drive them to appointments of all types (medical, SSI, court appearances) Address acute needs with great intensity and then transition clients into a more chronic model when it’s appropriate Be creative and persevere
  49. 49. Expected Challenges – Cultures, subcultures, and politics – Disease stigma – Poverty, discrimination, addiction and surviving the streets in the communities in which hard to find and link populations reside. – Identifying and meeting the unique needs of each individual that is targeted for care services
  50. 50. Addressing the challenges – Identify barriers unique to each client – Use multiple service providers capable of addressing barriers – Link care through patient navigators to help insure the development and continuity of success during outreach, linkage, and retention efforts – Keep it real
  51. 51. Outreach Team Members Community and/or jail liaisons Case managers and/or patient navigators Housing specialists Drivers Medical team A supportive administration
  52. 52. Developing and Sustaining a Program Historical development of services Transitional phase to expand, improve, and evaluate service delivery system
  53. 53. Know Your Community Chester is the third poorest city of its size in the nation; the city with the highest crime rate in its county; and the county with the third highest incidence rate of HIV disease in the state.
  54. 54. Know Your Target Population 20% of the clients seen for medical care and services do not have clean, safe, or affordable housing. 40% have had an incarceration history. All of the patients have experienced or continue to experience poverty.
  55. 55. Sustainability  Go through the doors that have been opened. Work beyond structural issues.  Help agency staff to become fluent in “jails” and “prisons”; in “shelters”; in “drug and alcohol treatment centers”; in “probation and parole”; in societal settings that have no time, energy, or capacity to work with “hard-to-find, link, and retain” populations.
  56. 56. Social Marketing Outreach Methods: Project STYLE    Lisa Hightow-Weidman, MD, MPH Associate Professor of Medicine University of North Carolina at Chapel Hill
  57. 57. (Strength through Youth Livin’ Empowered)
  58. 58. DETECTION OF OUTBREAK  November 2002: North Carolina began screening for acute HIV infection  Acute HIV: defined as antibody-negative, RNA positive  Used robotic pooling, rapid notification, and confirmatory testing  In early 2003, of 5 acute infections detected within the first 3 months, 2 were young Black MSM attending college in the Triangle  Only report of HIV among college students prior to this showed very low HIV prevalence
  60. 60. COLLEGE VS NON-COLLEGE JANUARY 2000-APRIL 2005 Number of Cases 250 200 150 College Noncollege 100 50 0 2000 2001 2002 2003 Year of Diagnosis 2004 JanApril 2005
  61. 61. COLLEGE CASES JANUARY 2000-APRIL 2005 Number of Cases 60 50 40 30 College cases 20 10 0 2000 2001 2002 2003 Year of Diagnosis 2004 JanApril 2005
  62. 62. 157 COLLEGE STUDENTS 133 African American (84.7%) 79 Male sex partners 44 Male and female 6 Female sex partners (59.4%) sex partners (4.5%) (33.1%)
  63. 63. THE YMSM OF COLOR SPNS INITIATIVE  The Initiative funded in Fall 2004, with five year grants  Eight Demonstration sites  Develop, implement, and evaluate innovative models of care for Young MSM of color  Apply intervention models that identify, engage, link, and retain HIV-infected individuals in care  One Evaluation Center (GWU YES Center)  Support intervention and local evaluation efforts of grantees, with capacity building, TA, and training  Conduct comprehensive, multi-site program evaluation
  65. 65. STYLE PROJECT GOALS  Goal 1: Increase identification, testing and enrollment in enhanced HIV services for young MSM of color at risk for or infected with HIV in North Carolina  Goal 2: Improve linkage to and retention in care for HIV+ clients  Goal 3: Provide quality care and prevention messages for young sero-positive MSM of color
  66. 66. STYLE SERVICES OVERVIEW  Clinical care for Young HIV+ MSM  Focus on linking to care and retention in care  HIV care provided at 2 local clinics by staff physician  Support and Client Services  Case management (AAS-C)  2 weekly support groups for HIV+ Black Men  One-on-one support by outreach staff  Rapid HIV Counseling and Testing (Venue based/College Tour)  Outreach and education in the community  HIVSTD 101/HIV in the Black Community  Social Marketing  Health Fairs/Community Events/Pride  Healthcare provider training on LGBTQ issues  LGBTQ Resource Guide
  67. 67. SOCIAL MARKETING CAMPAIGN  #1: Decide goals of campaign and target audience  Locations: college campuses and community  Goal: increase HIV testing among young men who have sex with men of color  Medium: print based with website for more information  This was 2006
  68. 68. SOCIAL MARKETING CAMPAIGN  #2: Recognize the need for collaborations  Collaborated with a social marketing company (Better World Advertising) to conduct formative research to inform message development and campaign materials
  69. 69. SOCIAL MARKETING CAMPAIGN  #3: Conduct formative research  Conducted focus groups with Young Black MSM and interviews with other key stakeholders (college administrators, student health workers, community partners)  Presented ideas for media campaign
  70. 70. THE LOGO
  71. 71. Ad #1
  72. 72. Ad #2
  73. 73. The Chosen Campaign
  74. 74. The Chosen Campaign
  75. 75. STYLE CORE COMPONENT: TESTING  College/Venue based Rapid HIV testing tour  Over 3000 NC college students tested  10 new positives identified and linked to care  Mix of schools (Duke, UNC-Chapel Hill, NC State, NC Central, Shaw, St. Augustine’s, Livingstone) also includes testing events at churches  Youthful testing staff, buy-in from campus groups drives high turnout (as many as 250 students at an event)  Core component is confidentiality for positive clients (space/ logistics)  MD on site/on call of immediate linkage to confirmatory testing and care
  77. 77. OUTCOMES  81 HIV-infected YMSM of color were enrolled in STYLE.  The mean age of the sample was 21 years; 83% identified as black and 11% as Latino.  Two thirds of the cohort was newly diagnosed.  85% of STYLE clients attended at least one primary care visit in each 6-month period over a 2-year span
  79. 79. Outreach in 2013 PHEED Early 2000s Outreach
  80. 80. Social media landscape is “dynamic”
  81. 81. CAN SOCIAL MEDIA LEAD TO SOCIAL GOOD? What determines? Like Share Unlike Move on/ignore
  82. 82. CONCLUDING THOUGHTS  Important to identify the goals, target population and media platform for your social marketing campaign  Formative work with all key stakeholders is critical  What you want may not be what they want, need or will use  Be forward thinking of the current “venues” where the target population can be reached.
  83. 83. Q&A To sign up to receive emails about other IHIP products and Webinars, email Sarah Cook-Raymond of Impact Marketing + Communications at