Community perspectives on research with older ...

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The Coachella Valley (CV) is home to an older group of people living with HIV/AIDS. •. The average age of persons living with HIV in the CV is 51.2 years, ...
HIV AND AGING: A FOCUS ON THE COACHELLA VALLEY Brandon Brown, PhD, MPH Assistant Professor School of Medicine University of California, Riverside [email protected]

It is not completely understood if HIV causes premature aging, or if aging makes HIV disease worse

The Coachella Valley (CV) is home to an older group of people living with HIV/AIDS. •



The average age of persons living with HIV in the CV is 51.2 years, compared to 40.1 in the rest of Riverside County. 24% of people living with HIV in CV > 60 •

In the rest of Riverside County, only 7.5%

LOTS of interest! • Patients, physicians, and others are interested to be involved

in HIV and aging research, but don’t have the experience

“We are often approached for research but need help to build capacity to do it” • Lots of stakeholders, not lots of connections between them • Working in silos, replication of work • Everyone is busy!

Meet PCORI “This is going to be research done differently!” Patient Centered Outcomes Research Institute Board Member Harlan Krumholz, MD National Patient and Stakeholder Dialogue National Press Club, Washington, DC February 27,2012 © 2015 Coachella Valley Community Research Initiative

Coachella Valley Community Research Initiative

What roles should patients and stakeholders play in research teams? Engagement should include: • Participation in formulation of research questions; • Defining essential characteristics of study participants

and outcomes;

• Monitoring of study progress; and • Dissemination of research results.

Source: PCORI PFA Application Guidelines (Sec. 3.1.3.4) http://www.pcori.org/assets/PFAguidelines.pdf

© 2015 Coachella Valley Community Research Initiative

Coachella Valley Community Research Initiative

What have we learned so far? • Normal aging vs. aging with HIV; mental health;

quality of life; comorbidities; complementary or alternative med; end-of-life issues • “There are so many things that come to mind when we are talking

about the end-of-life. There are a lot of people that will help in recovery. But outside of that, when someone comes to the end of their life and they have no family and they have nobody else, it’s quite often that they are just dropped completely. There should be something that will address that.”

So what are we doing? • Build the foundational relationships and capacity of

stakeholders to conduct research on aging and HIV 1. create a shared governance structure including all

stakeholders (voice), 2. disseminate knowledge and develop relationships, 3. identify and explore key topics for future research, and 4. build stakeholder capacity to engage in research using GPP

Our major stakeholders CBOs

Healthcare organizations -HARC -Borrego Health -The LGBT Center -Desert AIDS Project -Mizell Senior -Eisenhower Medical Center Center -CVCRI -UCR Family Medicine -Jewish Family Clinic Service Desert Healthcare District

Individual Providers Caregivers Academics -Physicians -Nurse Practitioners -Pharmacists -Mental health

-Family -Friends -Volunteers -Partners

-Basic researchers -Applied researchers -Socio-behavioral researchers -Clinical faculty researchers

Right now • PCORI Engagement Award

• Start date May 1, 2017 • Before then…….planning! • Build our steering & advisory committees • Train our staff & volunteers

If you only remember one thing: It is no longer enough to study the problems of HIV and aging… We must now turn to studying the solutions, in ways that matter to community, and to individuals living with the virus. © 2015 Coachella Valley Community Research Initiative

Coachella Valley Community Research Initiative

Acknowledgements • My community partner and co-lead Mr. Jeff Taylor

• CVCRI • PCORI Engagement Award (4367-RUOC) • Many project partners • CBOs: HARC, The Center, Mizell Senior Center, CVCRI, Jewish Family Services • Healthcare Organizations: Borrego Health, Desert AIDS Project, Eisenhower Medical Center, UCR Family Medicine Clinic • Individual providers, caregivers, academics • UC Riverside SOM Center for Healthy Communities

Thank you! • Questions?

• Brandon Brown [email protected]