1 Reaching Out to Share the Benefits of Care: Retention and Peer Advocacy May 24, 2012 For Audio: Dial-in#: Participant Code: #

2 Welcome & Overview For more information:  This Partners in+care webinar is offered as part of the in+care Campaign.  The in+care Campaign is a national effort to improve retention in HIV care.  Webinars are one of many Partners in+care activities designed to engage people living with HIV/AIDS and their allies in the in+care Campaign.  This webinar addresses how peer advocacy supports engagement in HIV care and retention. It is the third in our series. Others identified why retention is important and role of self-care. Michael Hager NQC Manager, TA/Dissemination New York, NY

3 Welcome, Overview, Participation Guidelines Ground Rules for Webinar Participation  Welcome  This is a “public event.” If you have confidentiality concerns... -Your names appear on-line in the list of webinar registrants--consider just listing to the audio or to viewing the webinar at a later time, after it is posted at www. incarecampaign.org -All webinars are recorded--do not use identifying information when asking questions For Audio: Dial-in#: Participant Code: #

4 Welcome, Overview, Participation Guidelines Ground Rules for Webinar Participation  Actively participate and write your questions into the chat area during the presentation; we will also have a “pop up” question exercise, and will pause for conversation during the webinar  Do not put us on hold  Mute your line if you are not speaking (press *6, to unmute your line press #6)  The slides and recording of this and other Partners in+care webinars are available for playback and group presentations at www. incarecampaign.org – “Resources” tabwww. incarecampaign.org For Audio: Dial-in#: Participant Code: #

5 Welcome & Introduction Agenda  Welcome, Overview, Participation Guidelines - 5 mins  Agenda, Learning Objectives, Introductions - 5 mins  Characteristics of Effective Peer Advocacy, 20 mins  Putting Peer Connections into Action, 20 mins  Connecting through Partners in+care, 5 mins  Wrap-up & Evaluation, 5 mins Conversation opportunities throughout webinar Bob Tracy, NQC Peer Consultant St. Paul, MN

6 At the end of this webinar, you will know more about...  How peer advocacy can be used to support retention in HIV care  Key elements of successful peer advocacy  How to use Partners in+care to support your retention activities Welcome & Introduction Learning Topics

7 Retention & Peer Advocacy What is retention? For more information about retention and its benefits visit – “Resources” tab  Stay in care / Return to care  Retention –having a routine for seeing your doctor/health care provider on a regular schedule  Doing this persistently – year- after-year-after-year There is a relationship—a seemingly obvious relationship— between regular medical visits and improved health and reduced mortality. Research published in 2010 provides the first data to demonstrate the survival advantage of regular HIV care. [Giordano, 2010]

8 Retention & Peer Advocacy What are barriers to retention?  Do not feel sick  Need more HIV info  “Life” gets in the way Other health issues Little experience with routine health care Not enough help  Clinic/system too complex Processes are confusing Need more help at clinic Check out the in+care Campaign video – “Partners” tab For more information about barriers to retention visit - “Resources” tab For more information about barriers to retention visit - “Resources” tab

9 Retention & Peer Advocacy How can peer advocacy improve retention?  Peer-to-peer connections can support retention  Can be formal [staff] or informal [volunteers]  What can peers offer peers?  What makes for effective peer advocacy?

10 Characteristics of Effective Advocacy “Positive Examples” – Experiences of Peer Educators Marcia Dutcher Evaluation Consultant Kansas City, MO “Positive Examples”: A Bottom-up Approach to Identifying Best Practices in HIV Care and Treatment Based on the Experiences of Peer Educators, AIDS Patient Care & STDs, Vol. 25, April,  Peers can impact access, engagement & effective use of care and services, social support, self care & contribute to cost effectiveness  Evaluation based on PETS/REC – Understand essential characteristics of peer-based interventions & role of peers?

11 Characteristics of Effective Advocacy PETS/REC Overview “Positive Examples”: A Bottom-up Approach to Identifying Best Practices in HIV Care and Treatment Based on the Experiences of Peer Educators, AIDS Patient Care & STDs, Vol. 25, April,  Train PLWHA to serve as peers to engage other PLWHA in care and treatment  Build capacity of organizations and communities to integrate peers into HIV care and treatment services

12 Characteristics of Effective Advocacy “Bottom-Up” Approach to Defining Effective Advocacy “Positive Examples”: A Bottom-up Approach to Identifying Best Practices in HIV Care and Treatment Based on the Experiences of Peer Educators, AIDS Patient Care & STDs, Vol. 25, April,  Interviewed experienced HIV+ peers  23 interviewees; urban/rural; variety of demographic characteristics & peer work experience  Describe roles, activities, strategies and elements important to success

13 Characteristics of Effective Advocacy Context for Peer Advocacy “Positive Examples”: A Bottom-up Approach to Identifying Best Practices in HIV Care and Treatment Based on the Experiences of Peer Educators, AIDS Patient Care & STDs, Vol. 25, April,  Relationship Mutually identified as HIV+ Shared experience Credibility; role model motivate change  Support Focus on health behaviors; access and use of care/treatment Practical needs; relieving barriers Flexible response to needs

14 Characteristics of Effective Advocacy Social Support Categories Instrumental Tangible aid and services that directly assist a person in need Informational Communicating advice or information to assist a person in addressing problems or self- assessment Emotional Providing empathy, love, caring and trust Affiliational Convey or assist with a connection to a social network of reciprocal help or mutual oblication

15 Characteristics of Effective Advocacy Social Support Categories Instrumental Directly connect to care Provider referrals Research info & resources Scheduling support [e.g. reminder calls, rides] Informational Support learning & understanding Comprehend info from providers Not replace provider; clarify in layperson’s terms Understand & navigate health system/provider Prep for provider visits Emotional Support & relieve stress Build confidence to change behavior Challenge to change behavior Affiliational Address isolation Connect to social networks Integrate opportunities to inform & engage care Motivate change

16 Characteristics of Effective Advocacy Summary of Findings  Unique ability to engage and motivate; power of common experience and role models  Provide direct education and connect to care and resources [e.g. support retention]  Also address basic needs [e.g. overcome barriers to retention]

17 Characteristics of Effective Advocacy Summary of Findings  Peer advocate needs to be comfortable identifying as HIV+; establish connection  Ability to flexibility respond to needs  Creating fit with clinic/organization; clearly define peer roles and fit; using social support framework can help  Training and support are critical

18 Additional Questions? Contact us a Characteristics of Effective Peer Advocacy Conversation Pop-up Question In your opinion, what is the social support peers can provide most effectively? Instrumental? Informational? Emotional? Affiliational?

19 Putting Peer Connections into Action Panel Discussion - Introduction What have we learned from our experiences about what makes peer advocacy effective and useful for promoting retention? Mike Maginn, Executive Director Friends of People with AIDS Peoria, IL Steve Tifft, Health Educator MN AIDS Project / Positive Link Minneapolis, MN Marcia Dutcher Evaluation Consultant Kansas City, MO

20 For more information: Contact Mike Maginn – Activities include...  Train peer navigators for state of Illinois  3-day training  Prepare for formal or informal system support [i.e. work employment or volunteer peer support]  Facilitate placement & site integration  Provide on-going supervision and support Central IL Friends of People Living with AIDS Putting Peer Connections into Action Panel Discussion - Introduction

21 For more information: Contact Steve Tifft – Activities include...  Self-care education and emotional support  Coordinated with MCM & Quick Connect  Peer advocacy services provided 1:1, groups, Web/ /social networking Minnesota AIDS Project – Positive Link Putting Peer Connections into Action Panel Discussion - Introduction

22 Please post your response to this question in the chat room. In your experience, what kind of support services do you think peer advocates are particularly effective at providing, especially in terms of helping people get into or stay in care? Putting Peer Connections into Action Panel Discussion

23 Please post your response to this question in the chat room. Based on your experiences, what makes for an effective peer advocate? Putting Peer Connections into Action Panel Discussion

24 Please post your response to this question in the chat room. Based on your experiences, when do you know it is a good idea for someone to be connected with a peer advocate? Putting Peer Connections into Action Panel Discussion

25 Please post your response to this question in the chat room. What needs to happen to effectively integrate peer advocacy into a professional team? Putting Peer Connections into Action Panel Discussion

26 Peer advocacy is not just a face-to-face experience. There is increased interest in social networking. What experiences have you had using social network and what have been some of your key lessons learned? Putting Peer Connections into Action Panel Discussion Great resource! “Social Media and HIV,” HRSA CARE Action, June

27 Please post your response to this question in the chat room. What advice would panelists or participants like to share about using peer advocates to promote retention? Putting Peer Connections into Action Panel Discussion – Wrap Up

28 Connect to Partners in+care An Invitation  Join the Partners in+care network  Visit Partners in+care web page; click the “Join Partners in+care” red box  Encourage others to join the Partners in+care network Visit – Partners Tabwww.incarecampaign.org John Spaero, Program Coordinator Maricopa County EMA Phoenix, AZ

29 Connect to Partners in+care How Pi+c fits into the in+care Campaign

30  Resource for planning group & advisory committee work  Support peer programs  Resources to support retention through self-care, peer connections and QM activities  Share “insider tips” Connect to Partners in+care Why get involved

31  Partners in+care FB network to share tips, stories and resources  Partners in+care toolkit  More webinars Connect to Partners in+care Why get involved

32  Retention & Youth, Thursday, May 31 2 pm ET – in+care Campaign webinar  Empowering Consumer Engagement, Thursday, June 21 3 pm ET – NQC TA Webinar  Working Together as Partners in+care, Thursday, June 28 2 pm ET – Partners in+care webinar Connect to Partners in+care Upcoming Webinar

33 Share what we know so we all get better at:  Seeing our doctor and HIV care providers on a regular basis  Reaching out and supporting others so they see their doctors and HIV care providers on a regular basis – especially those who are new to HIV care or who have stopped regular visits  Making sure we all get the full benefit of care and treatment in order to improve our health Connect to Partners in+care What We Hope to Accomplish

34 Sign up to be a Partner! Campaign Headquarters: National Quality Center (NQC) 90 Church Street, 13 th floor New York, NY Phone incareCampaign.org

35 Partners in+care Selected References Cheever, Laura. Engaging HIV-infected Patients in Care: Their Lives Depend on It, Clinical Infectious Disease, 2007; Vol.44, Issue 11, pp Dutcher, Marcia Veronnica, et. al., “Positive Examples: A Bottom-Up Approach to Identifying Best Practices in HIV Care and Treatment Based on the Experiences of Peer Educators,” AIDS Patient Care & STDs, Vol. 25, April, Giordano TP, Gifford AL, White AC Jr, et al. Retention in Care: A Challenge to Survival with HIV infection. Clinical Infectious Disease, 2007; Vol.44, Issue 11, pp “Social Media and HIV,” HRSA CARE Action, June