June 28, 2012 Working Together as Partners in+care Introducing the Partners in+care Toolkit June 28, 2012 For Audio: Dial-in#: 866.394.2346 Participant Code: 3971546368# 1

For more information: www.incarecampaign.org Welcome & Overview 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. Michael Hager NQC Manager, TA/Dissemination New York, NY mth02@health.state.ny.us Michael For more information: www.incarecampaign.org

For Audio: Dial-in#: 866.394.2346 Participant Code: 3971546368# Participation Guidelines 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 Michael For Audio: Dial-in#: 866.394.2346 Participant Code: 3971546368#

For Audio: Dial-in#: 866.394.2346 Participant Code: 3971546368# 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 www.incarecampaign.org – “Resources” tab Michael For Audio: Dial-in#: 866.394.2346 Participant Code: 3971546368#

Welcome, Overview, Participation Guidelines - 5 mins Agenda Welcome, Overview, Participation Guidelines - 5 mins Agenda, Learning Objectives, Introductions - 5 mins Partners in+care Refresher, 20 mins Opening the Partners in+care Toolkit, 20 mins The Impact of Retention, 5 mins Wrap-up & Evaluation, 5 mins Conversation opportunities throughout webinar Bob Tracy, NQC Peer Consultant St. Paul, MN bobtracyconsulting@gmail.com Bob

At the end of this webinar you will know . . . Learning Objectives At the end of this webinar you will know . . . How the in+care Campaign and Partners in+care fit together What resources are available in the Partners in+care Toolkit Why it is important to engage peers and consumers in our “push” to improve retention Bob

Purpose for in+care Campaign Partners in+care Refresher Purpose for in+care Campaign The purpose for the in+care Campaign is to improve health and prevention by keeping and getting more people living with HIV/AIDS in care. We are doing this by facilitating local, regional and state-level initiatives to improve retention. Michael Visit www.incarecampaign.org

Five Parts of the in+care Campaign Partners in+care Refresher Five Parts of the in+care Campaign Michael Visit www.incarecampaign.org

Partners in+care Purpose Partners in+care Refresher Partners in+care Purpose Successful results in HIV care depend upon partnership between consumers and their providers. So does the in+care Campaign. 1 minutes Bob Successful management of HIV as a chronic disease requires many working together in partnership: health care “system,” health care providers – doctor and others, HIV service providers, friend, family and others in our community, but one person who is on the job – who needs to be on task 365 days a year is the person living with HIV/AIDS.

Visit www.incarecampaign.org – “Partners” tab Partners in+care Refresher Purpose for Partners in+care Campaign Engage people living with HIV/AIDS as partners in the in+care Campaign Increase Knowledge Web “hub” Webinars Resources National Network Peer-to-peer exchange Self Care Peer-to-Peer Engage in QI Michael Explain what the Partners in+care activities are intended to do [increase knowledge to support retention], the tools we will be using to do this [web, create national network of “Partners” in+care, webinars, exchange information through Web], all with a focus on increasing knowledge to improve retention through self-care, peer-to-peer connections and consumer engagement in creating systems that work – helping all of those others do the best as they want to do. Visit www.incarecampaign.org – “Partners” tab

How have you been involved with the in+care Campaign? Partners in+care Refresher Pop-up Question How have you been involved with the in+care Campaign? Signed-up for in+care Campaign? Participated in webinars? Worked with a regional coach? Involved with a regional learning group? Signed up for Partners in+care? I’m new. Today is the first. Other? Select all that apply. Michael Visit www.incarecampaign.org

What has Partners in+care offered, to date? Partners in+care Refresher What has Partners in+care offered, to date? November – Pi+c work group formed February - Launched Pi+c web site and introduced the Pi+c network * March – Webinar introducing retention and Pi+c April – Webinar on self-care and retention May – Webinar on retention and peer-to-peer outreach & support June - Introduced the Pi+c Facebook page; exchange tips, stories, information & experiences ** June – Pi+c Toolkit launch & introductory webinar Michael * Sign up for Pi+c network at www.incarecampaign.org – “Partners” tab ** Send email to incare@NationalQualityCenter.org – “Facebook” in subject line

Introducing the Pi+C Toolkit Partners in+care Toolkit Introducing the Pi+C Toolkit A set of resources to reach peers and consumers that are easy-to-find on the Partners in+care web page that you can use to: Support knowledge about retention Promote involvement in Pi+c Bob Visit www.incarecampaign.org – “Partners” Tab – Partners in+care Toolkit

What’s in the Pi+C Toolkit Partners in+care Toolkit What’s in the Pi+C Toolkit “How To” guide Pi+c awareness and promotional tools Web resource links Key articles Short Powerpoint presentations Webinar archive Bob Visit www.incarecampaign.org – “Partners” Tab – Partners in+care Toolkit

Using the Pi+C Toolkit Partners in+care Toolkit Getting what you need from the Pi+c web site to take the Pi+c experience beyond the web Bob Visit www.incarecampaign.org – “Partners” Tab – Partners in+care Toolkit

Where to find the Pi+C Toolkit Partners in+care Toolkit Where to find the Pi+C Toolkit www.incarecampaign.org Click the “Partners” tab Open the Pi+c Toolkit Partners in+care Toolkit Bob Visit www.incarecampaign.org – “Partners” Tab – Partners in+care Toolkit

Awareness Tools in+care Campaign video Promotional flier [PDF] Partners in+care Toolkit Awareness Tools in+care Campaign video Promotional flier [PDF] Palm card [PDF] Tear sheet [PDF – updated to promote next Pi+c webinar] Tip Sheet [messages for email, FB & Twitter] Bob Visit www.incarecampaign.org – “Partners” Tab – Partners in+care Toolkit

Awareness Tools Have you used any of the Pi+c awareness tools? Partners in+care Toolkit Awareness Tools Have you used any of the Pi+c awareness tools? Tell us how you have used the tools and about your experiences in the chat room. Bob Visit www.incarecampaign.org – “Partners” Tab – Partners in+care Toolkit

Resources to Share Key HIV Terms [HRSA] Ryan White Services [HRSA] Partners in+care Toolkit Resources to Share Key HIV Terms [HRSA] Ryan White Services [HRSA] Living History [HRSA] HIV self-care [HRSA] Info about HIV [CDC] Self Care [The Body] Consumers & QM/QI [NQC] Bob Visit www.incarecampaign.org – “Partners” Tab – Partners in+care Toolkit

More Resources to Share Partners in+care Toolkit More Resources to Share Cheever, Laura. Engaging HIV-infected Patients in Care: Their Lives Depend on It, Clinical Infectious Disease, 2007; Vol.44, Issue 11, pp 1500-1502. 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 1493-1499. Bob Visit www.incarecampaign.org – “Partners” Tab – Partners in+care Toolkit

Things You Can Show Short Powerpoint Presentations & Discussion Tools Partners in+care Toolkit Things You Can Show Short Powerpoint Presentations & Discussion Tools Pi+c overview Retention: What It Means for You Retention & Self-care Retention & Peer-to-Peer Support Retention & Consumer Involvement in Quality Management & Improvement Bob Visit www.incarecampaign.org – “Partners” Tab – Partners in+care Toolkit

Things You Can Watch Pi+c Webinar Archive Partners in+care Toolkit Things You Can Watch Pi+c Webinar Archive Retention: Partners Make It Happen It Starts with One: Retention & Self-care Reaching Out to Share the Benefits of Care: Retention & Peer Advocacy Other in+care Campaign webinars available @ www.incarecampaign.org Bob Visit www.incarecampaign.org – “Partners” Tab – Partners in+care Toolkit

+Sign up to Be a Partner in Care Partners in+care Toolkit Ways To Connect Pi+c Network Email notices and updates about Pi+c and in+care Campaign Provide advice [Pi+c surveys] +Sign up to Be a Partner in Care Bob Visit www.incarecampaign.org – “Partners” Tab – Partners in+care Toolkit

Partners in+care Toolkit Ways To Connect Pi+c Facebook Community Share tips, stories, experiences & resources Community of people living with HIV/AIDS and allies Secure and confidential Join. Send email to incare@NationalQualityCenter.org – Facebook in subject line Bob

+ Tell Us Your Improvement Stories Partners in+care Toolkit Ways To Share Share your experiences. + Tell Us Your Improvement Stories Share your resources. Send them to incare@NationalQualityCenter.org Join Pi+c work group. Bob Visit www.incarecampaign.org – “Partners” Tab – Partners in+care Toolkit Send email to incare@NationalQualityCenter.org – “Work Group” in subject.

Are you connected with Partners in+care? Partners in+care Toolkit Raise Your Hand Are you connected with Partners in+care? How many have signed up for the Pi+c network through the Pi+c web page? How many have joined the Pi+c Facebook page? Who wants to join? Bob Sign up for Pi+c network at www.incarecampaign.org – “Partners” tab Send email to incare@NationalQualityCenter.org – “Facebook” in subject line

1/3 to 2/3 of PLWHA in US are not in regular care Our Goal What We Want to Change 1/3 to 2/3 of PLWHA in US are not in regular care 17-40% of PLWHA who know status are not in regular care 40% of patients newly diagnosed did not see provider within 6 months Michael Why is retention such a problem that it merits the focused attention of a year-long, national campaign to make things better? Cite key statistics that illustrate low number of people living with HIV/AIDS who are fully engage in care. Summary: In summary, the problem is way, way too many people living with HIV are not getting the regular kind of health care services they need to take full advantage of what we can do to keep them healthy and alive. We need to do better. Much better. Note that studies are available on the in+care Campaign web site.

Stay in care / Return to care Our Goal The Value of Retention 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] Michael

Continuum of Engagement Our Goal Continuum of Engagement Michael Introduce the continuum of engagement. Note that what we are trying to achieve is “full engagement” in HIV care. Retention is about helping those who are receiving some medical care, are lost to care or are using care intermittently make the changes to be “fully engaged.” While getting tested and linked to care are absolutely important parts of the continuum of engagement for HIV care, “retention” is that set of activities that we undertake to keep people connected or to get them reconnected once the initial “link” to care has been made through testing and linkage activities. Retention address those stages of engagement with the red dots or arrow. The black dots note linkage activities that are not the primary focus for retention. What does it mean to be fully engaged? It means, routinely attending provider visits for primary HIV care. Generally, we are talking about attending one visit with your HIV care provider – the person who can prescribe HIV treatment medications – at a minimum of every six months. It also means persistence – making these routine visits year-after-year-after-year.

Visit www.incarecampaign.org – “Partners” Tab Our Goal Partners in+care: Providers & Consumers Coming Together to Overcome Retention Challenges Self-care – learning more Reaching out to others – peer-support, peer navigators, friends and family “Systems” that work with us by working with them Michael Visit www.incarecampaign.org – “Partners” Tab

What We will Accomplish Our Goal What We will Accomplish Create a network of 1000 consumers ready to be engaged in retention through Pi+c. Identify 100 consumers ready to become Pi+c leaders & advisers. Michael Sign up for Pi+c network at www.incarecampaign.org – “Partners” tab Send email to incare@NationalQualityCenter.org – “Facebook” in subject line

What We will Accomplish Our Goal What We will Accomplish 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 Michael

Will You Join Pi+c? How Can You Use the Pi+c Toolkit? Michael Visit www.incarecampaign.org - “Partners” tab Sign up for Pi+c network at www.incarecampaign.org – “Partners” tab Send email to incare@NationalQualityCenter.org – “Facebook” in subject line

Visit Web / Open the Toolkit www.incarecampaign.org - “Partners” tab Sign up for Pi+c Network www.incarecampaign.org – “Partners” tab Join Facebook Send email to incare@NationalQualityCenter.org – “Facebook” in subject line Campaign Headquarters: National Quality Center (NQC) 90 Church Street, 13th floor New York, NY 10007 Phone 212-417-4730 34