in + care Campaign Meet the Author January 30, 2013

1. in+care CampaignMeet the Author January 30, 2013

2. Ground Rules for Webinar Participation Actively participate and write your questions into the chat area during the presentation(s) Do not put us on hold Mute your line if you are not speaking (press *6, to unmute your line press #6) Slides and other resources are available on our website at incareCampaign.org All webinars are being recorded

3. Welcome & Introductions Michael Hager, MPH MA NQC Manager, in+care Campaign Manager MedhaVyavaharkar, PhD, MPH, MD, DNB, DGO, DFP Research Assistant Professor, SCRHRC Dept. of Health Services Policy & Management Arnold School of Public Health University of South Carolina In the chat room, Enter your: 1. name, 2. agency, 3. city/state, and 4. professional role at agency

4. Agenda • Welcome & Introductions, 5min • How Can We Increase Initiation Of and Retention In Care Among Persons Living With HIV, 30min • Q & A Session, 20min • Updates & Reminders, 5min

5. How do you assess patient barriers? (check all that apply) • Medical Case Managers Ask Patients • Medical Providers Ask Patients • Patients Complete a Survey • Other (describe in chat room) How do you know if barriers are specific to one patient or are generalized across your clinic clientele? (check all that apply) • We Just Know • We Collect Population Data on Barriers and Analyze it Internally • We Discuss Issues Related to Barriers Externally (community fora, learning networks) • Other (describe in chat room) How do you engage your patient advisory/feedback mechanisms around this issue? (check all that apply) • Consumer Advisory Board • Quality Committees • Community Fora • We Share and Collect Information Passively • Other (describe in chat room)

6. How Can We Increase Initiation Of And Retention In Care Among Persons Living With HIV? Medha Vyavaharkar, PhD, MPH, MD, DNB, DGO, DFP Research Assistant Professor, South Carolina Rural Health Research Center Department of Health Services Policy and Management Arnold School of Public Health, University of South Carolina

7. Our Team • Donna Richter, EdD, FAAHB Professor; Ex-Chair; Ex-Dean Department of Health Promotion, Education, & Behavior (HPEB) • Lucy Annang, PhD, MPH Assistant Professor, HPEB • Leah Williams, DrPH, MPH Research Assistant, HPEB • Saundra Glover, PhD, MBA Professor; Associate Dean for Health Disparities & Social Justice; Associate Director, SC Rural Health Research Center; Director, Institute for Partnerships to Eliminate Health Disparities Department of Health Services Policy and Management • We thank our participants & community liaison for their time & contributions to this study

8. Background • Transformation of HIV into a chronic disease • Treatment as prevention • Early start & continuation of HIV care critical for • Optimal viral suppression • Decreased transmissibility of HIV • Significant reduction in mortality & morbidity • Improved quality of life • HIV care retention – vital for success at individual as well as population levels

9. HIV Care Initiation & Retention • National statistics 1 • Estimated 1.2 million PLWHA • Estimated 942,000 aware of the diagnosis • 77% of the diagnosed - linked to care within 3 months of diagnosis • 51% of the diagnosed - retained in care 1 – CDC (2011). Vital signs: HIV prevention through care & treatment – United States. MMWR, 60(47), 1618-1623

10. South Carolina Statistics • 15,144 PLWHA (case rate=324/100,000) 2 • 3,697 newly diagnosed cases in 2004-2008 3 • 48% entered care within 3 months • 13% remained out of care at the end of 5 years • Among those who entered care • 50% failed to maintain optimal retention (at least 1 visit in each of four 6-month intervals for 2 years) 4 • 35% remained in care after 3 years 5 2 – SCDHEC (2011). South Carolina’s STD/HIV/AIDS Data, Surveillance Report, December 31, 2011. 3 – Tripathi, A., Gardner, L.I., Ogbuanu, I., et al. (2011). Predictors of time to enter medical care after a new HIV diagnosis: A statewide population-based study. AIDS Care, 23(11), 1366-1373. 4 – Tripathi, A., Youmans, E., Gobson, J.J., et al. (2011). The impact of retention in early HIV medical care on viro-immunological parameters and survival: A statewide study, AIDS Res Hum Retroviruses, 27(7), 751-758. 5 – Olatosi, B.A., Probst, J.C., Stoskopf, C.H., et al. (2009). Patterns of engagement in care by HIV-infected adults: South Carolina, 2004-2006. AIDS, 23(6), 725-730.

11. Our Goals • Explore factors that influence care initiation & care continuity among PLWHA • Identify potential mechanisms for increasing care initiation & retention

12. Our Approach • Community based participatory study • Consultation with the Community Advisory Board (CAB) • Qualitative methods • Focus groups with persons living with HIV/AIDS (PLWHA) • Personal interviews with care professionals

13. Our Setting • A southern rural county in SC • Total population of < 100,000 • > 62% African Americans (AA) • 25% below poverty • Median household income ~ $33,000 • >500 PLWHA with 90% AA • Ranks in top 5 counties in the state by prevalence rate

14. What We Did • Approval from the IRB • Study protocol & instruments presented to the CAB for its approval • Hired a community liaison (who is a person living with HIV) to assist in participant recruitment • Contacted local community health center (CHC) & other local providers who offered care to PLWHA • Conducted 3 focus groups (Avg. 6 participants) & 8 personal interviews during June 2011 – Feb 2012

15. What We Did – Contd. • Focus groups with PLWHA in care • Approximately 2 hours long • Open-ended questions • Available services, gaps in services, facilitators & deterrents to seek or continue care, recommendations/potential solutions • Interviews with HIV care providers • Approximately 30 minutes long • Open-ended questions – from provider perspectives • Data management • Audio-recorded with digital recorders • Professional transcription • Analysis using Nvivo-9

16. Challenges & Solutions • Recruitment of PLWHA not-in-care • Concerns with stigma & disclosure • Unwillingness to participate in a group setting • Our efforts • Consultation with the HIV-site director of the CHC, SC HIV Planning Council Co-Chair & Planning Coordinator • Offered the option of individual interview in lieu of focus group • Trained the community liaison to conduct interviews • Recruitment of healthcare providers other than CHC • Repeated requests for the interviews • Unable to get any response

17. What We Found • Patient-related factors • Denial • Personal beliefs & preferences • HIV-related knowledge • Fear of disclosure “When I first came down with HIV/AIDS, I didn’t want no one to know & I definitely didn’t want my family to know (be)cause I thought it would change the way they felt about me.”

18. Patient-Related Factors • Desire for survival – the most important facilitator identified across group discussions & interviews “I seek care because I want to live” “The reason why I go to my doctor is because I don’t want to be back where I was, stretched out in the hospital for 45 days with a CD4 count of six. I just don’t want to be that person anymore.” • Motivation & determination “The bottom-line (is), if you want to live, you’ve got to do what you’ve got to do & it all depends on how well you (do).”

19. What We Found – contd. • Provider/Organizational characteristics • Workforce • Health care providers • Case managers • Other staff – presence of a peer • Management • Support & access • Assistance with ancillary services • Culture • Clinic environment • Mission & values

20. Health Care Providers • Availability of an Infectious Disease Doctor • “Caring” nature, encouraging words, & non-stigmatizing & non-discriminatory behavior “He is real…Dr. X goes through my chart, he says, you’re doing wonderful…I’m proud of you. He’s a good doctor…he cares. He doesn’t act like we are… nasty. He will touch you. He acts like you’re a human. He enjoys his job…(he says)‘I’m going to make sure that I take care of you…give you the best of what I can’, that’s it ...”

21. Health Care Providers – contd. • Honest communication “I think sometimes (providers) do a little flowery effort…oh well, you’re HIV-positive, that’s okay, you can take your medicine. No, you need to tell them…if you don’t (take your medicine), you’re going to be like me. I was in hospital, I almost died…that can happen to you & be blunt with them, don’t flower it because it’s not flowery” • Willingness & ability to prescribe affordable treatment alternatives “I’ve found that Dr. X will (help). I’ll let him know my financial status…I got six prescriptions …I’ve got to pay out of pocket …He’ll look at the list & (substitute)… so I went from paying $100… to down to $12 or $16 a month.”

22. Health Care Providers – contd. • Rude/unfriendly behavior, stigmatizing attitudes, discrimination, lack of transparency, & lack of trust & rapport with provider – major barriers to care continuation • Found mainly in group discussions, not the interviews “… I didn’t receive services for five years because of the fatalistic attitudes of (providers) ... I went to the hospital for surgery, they tested me without my knowledge & when my test came back positive, they refused the surgery.” “…there is no relationship …with some providers… that’s what keeps me in & out of care. If I don’t have a relationship with my health care provider,…it makes me not want to go to the doctor.”

23. Case Managers • Genuine interest in clients • Non-discriminatory behavior • Dedication & efficiency • Willingness to go beyond the call for duty “I like to hug my clients…A lot of them have said to me, well you know, Ms. X, I have family members who don’t even want to hug me cause they think they could catch it. I said, … if you give me the name & number, I’ll call & talk with him. And I have called & talked to them.” – Case manager

24. Case Managers – contd. “The case managers are amazing. They network, they call, they talk to the pharmaceutical reps, they talk to other ASOs…I’ve seen them network & pull out resources that I didn’t know were available.” – Healthcare provider “All I have to do is just pick up the phone (to call my case manager), she’ll just send me in the direction I got to go. If she has to do anything to intervene to help me out, she will” – Focus group participant

25. Management • Supportive & accessible management “...they’ll (clients) go right to X (the director) who is very accessible. If there’s a complaint, she’ll call us in the office, ask us what happened…let the client know that she’s following up & what the decision was.” – Case manager • Assistance with ancillary services “We are the best AIDS Service Organization in the country…You will find some that might do…one or two of these, but none that does everything…We call ourselves a one stop shop cause we do all right here in this one space.” – Case manager

26. Organizational Culture • Clinic environment “I can honestly see a big difference between the two facilities. (At Y), … nobody really talked to you, tried to get to know you, … make you feel comfortable. But with X, everybody is talking, everybody is cheerful …& making you feel like this is what I need.” – Focus group participant • Mission & values “People stay where they feel valued … important & tended to. We strive really hard not to just be a medical practice.” – Site director

27. Social Factors • Lack of transportation • Lack of housing • Lack of financial resources & insurance • Community-level stigma & discrimination • Social support & social interactions “Coming from large cities like New York, they have a lot of social supportive services…where we could socialize with our peers to see that we’re not in this alone…they can’t do that here…that doesn’t happen here.”

28. Our Recommendations • Targeted efforts towards • Raising awareness about seriousness of HIV & importance of regular HIV care • Eliminating stigma & discrimination in healthcare & community settings • Improving access to transportation & social services, particularly in rural areas • Improving social interactions & social support

29. Our Recommendations – contd. • Health care organizations should consider • Having an ID doctor, trained case managers, & a person with HIV on staff • Collaborating with other organizations that can assist in providing ancillary services to clients • Assessing the organizational structure, resources, & culture • Reviewing current policies in context of HIV & adapting, if necessary • Training providers/staff in meaningful, respectful, & transparent interactions with clients living with HIV • Establishing, nurturing, & internalizing the “open-arms non-judgmental” practices & culture • Allowing flexibility to clients in selecting/changing their case managers & reaching out to the management

30. What Can We Do?

31. Plan • Review current patterns • Identify problems/gaps • Identify stakeholders • Set goals & objectives • Formulate questions • Identify possible mechanisms to collect data • Select the most appropriate data collection method

32. Do • Collect the data • Quantitative • Annual reports • Chart reviews • Qualitative • Talk to clients, providers, case managers, other staff • One-on-one communication • Group communication • Notes/suggestions • Begin data analysis • Hire staff or consultant if needed

33. Study & Act • Interpretation of results • Summary & dissemination of findings • Engagement of stakeholders • Planning the next cycle • Decision-making on implementing changes • Timeline • Logistics

34. Discussion Questions • How do you query your patients about barriers and solutions at your site? • Is it easier to impact patient factors or systems factors? • How do you determine whether patient-specific themes are individual or community-wide? • How do you engage your consumer advisory and feedback mechanisms around these issues?

35. Your Perspectives/Stories • Write about your perspectives and experience in the chat room • Discuss your perspectives and experience live over the telecon • Enter your experiences in the Campaign Improvement Update Form at www.incarecampaign.org

36. Upcoming Events and Deadlines • Campaign Office Hours: Mondays & Wednesdays 4-5pm ET • Upcoming Webinars: • Retention on a Patient-by-Patient Basis| Feb. 7, 2013 2pm ET • Social Service Providers & Retention| Feb. 26, 2013 3pm ET • February Partners in+care Webinar| To be Scheduled • Data Collection Submission Deadline: February 1, 2013 • Improvement Update Submission Deadline: February 14, 2013

37. Time for Questions and Answers

38. Contact Information Medha Vyavaharkar, PhD, MPH, MD, DNB, DGO, DFP Research Assistant Professor, SCRHRC Department of Health Services Policy and Management Arnold School of Public Health, University of South Carolina 220 Stoneridge Drive, Suite 204 Columbia, SC 29210 Phone: 803-251-6317 Fax: 803-251-6399 Email: medha@sc.edu

39. Campaign Headquarters:National Quality Center (NQC)90 Church Street, 13th floor New York, NY 10007Phone 212-417-4730 incare@NationalQualityCenter.orgincareCampaign.org youtube.com/incareCampaign