Reaching Out to Keep our Friends in Care September 18, 2012 For Audio: Dial-in#: Participant Code: #

 Welcome, Overview, Participation - 5 mins  Advocacy Supporting Retention – 5 mins  Key Elements of Successful Peer Advocacy, 20 mins  Panel Discussion on Reaching Out, 25 mins  Wrap-up & Evaluation, 5 mins Conversation opportunities throughout webinar Agenda Michael Hager NQC Manager, TA/Dissemination New York, NY For Audio: Dial-in#: Participant Code: #

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 introduces tools you can use to engage peers and consumers in the in+care Campaign. Welcome & Overview

 This is a “public event.” If you have confidentiality concerns... -Your names appear on-line in the list of webinar registrants-- consider just listening 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: # Participation Guidelines

 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 – “Resources” tabwww.incarecampaign.org For Audio: Dial-in#: Participant Code: # Participation Guidelines

At the end of this webinar you will know...  How peer advocacy can be used to support retention in HIV care  Key elements of successful peer advocacy  Various approaches to conversations with peers on the importance of staying in care  How to use Partners in+care to support your retention activities Learning Objectives

Visit Pop-up Question Have you gone more than 6 months without seeing your HIV doctor? Yes No I am not HIV+ What is retention?

8 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]

9 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

10 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?

1/3 to 2/3 of PLWHA in US are not in regular care What We Want to Change 17-40% of PLWHA who know status are not in regular care 40% of patients newly diagnosed did not see provider within 6 months Our Goal

 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] The Value of Retention Our Goal

Visit Pop-up Question Has retention in care (making and keeping medical appointments) ever come up in conversations with loved ones living with HIV? Yes No I don’t know Our Goal

14 Key Elements of Successful Peer Advocacy Strengthening Our Community “Experts by Experience”  Spontaneous vs. Planned  Non Judgmental  Mutually Supportive  Education & Empowerment Tyler TerMeer Director, Ohio AIDS Coalition Columbus, OH

15 Peer Advocacy can be Spontaneous or Planned  Peer advocacy is often spontaneous.  Individuals find themselves more able to speak up than their friend, partner or fellow person living with HIV and people feel united because of a common cause.  Peer advocacy can also be strategic or planned.  To support successful linkage and retention. Key Elements of Successful Peer Advocacy

16 Nonjudgmental & Mutually Supportive  The relationship of a peer advocate is unique because it is based on mutual support.  Both individuals have the added benefit of a special insight and close rapport because they commonality in lived experience.  Both are then supported by someone who “understands” by experience and will not be judgmental about their circumstances. Key Elements of Successful Peer Advocacy

17 Peer Advocacy is Empowering  Advance the understanding of the standard of HIV care;  Increase ability to self-assess current level of care;  Develop capacity to self-advocate for improved healthcare;  Promote wellness through empowerment, education and advocacy. Key Elements of Successful Peer Advocacy

Visit Pop-up Question When you know of someone with HIV who is not in care, what is the typical reason? (select all that apply) I don’t feel sick enough to worry about it Other needs are more than a priority than my HIV care I have a hard time taking off work or making arrangements to see my doctor The health care system is too difficult to navigate Other reasons (tell us about them in the chat room!) I’ve never come across someone with HIV who is out of care Key Elements of Successful Peer Advocacy

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? Loida Bonney, MD MPH Emory University School of Medicine Atlanta, GA Daniel Bauer Founder, Living Pozitively New York, NY Tyler TerMeer Director, Ohio AIDS Coalition Columbus, OH

Funded by HRSA HIV/AIDS Bureau Let us know your experiences in the chat room! How do you support those who say they are not sick so they do not need to be in care? Speaking from Experience: Putting Peer Connections Into Action

Funded by HRSA HIV/AIDS Bureau What strategies or resources do you point to when you are told that a person is just too busy with other things to worry about health care? Speaking from Experience: Putting Peer Connections Into Action Let us know your experiences in the chat room!

Funded by HRSA HIV/AIDS Bureau What advice do you give to people who say that the healthcare system is too complex and not worth the effort to figure out? Speaking from Experience: Putting Peer Connections Into Action Let us know your experiences in the chat room!

Funded by HRSA HIV/AIDS Bureau What other anecdotes or examples do you share when you are asked to demonstrate the importance of being in care? Speaking from Experience: Putting Peer Connections Into Action Let us know your experiences in the chat room!

Visit Pop-up Question How likely are you to try talking to your HIV+ friends and family about the importance of staying in care? More likely than before I watched this program No more or less likely than before I watched this program Less likely than before I watched this program Key Elements of Successful Peer Advocacy

Campaign Headquarters: National Quality Center (NQC) 90 Church Street, 13 th floor New York, NY Phone Visit Web / Open the Toolkit - “Partners” tab Sign up for Pi+c Network – “Partners” tab Join Facebook Send to – “Facebook” in subject line