The EMA Ryan White consumer survey results are here!

This is a big deal.

Almost 400 people living with HIV told us about the services they use and the kinds of problems they had getting what they need. And lots of other things too. You’ll have to read the report to get all the details. But here’s a quick summary of what we learned and how we use this information.

Good news and bad news (mostly good news)

The region’s Ryan White clients are retained in care and virally suppressed. Almost everyone is getting the HIV medical care they need and are satisfied with the services they receive. Most people have insurance and a regular place for HIV care. They like and trust their doctors and case managers.

But

Life is hard for many people living with HIV who are living in poverty. Inadequate and unreliable transportation, unaffordable co-pays and deductibles, a history of incarceration, and homelessness and lack of affordable housing are the most common challenges people reported. These challenges prevent them from getting the medical care and other services that they need. But more importantly, the challenge of living in poverty with complex health conditions is really stressful. People need help and support to live healthy and happy lives.

Why the survey is important

We asked a lot of questions, which is why we have a 45+ page report. The report describes how we designed the survey, who responded, and what people told us. We also did advanced statistical analysis to see what kinds of patterns we could see from what people told us. We included other research and data about people living with HIV and their access to services in our EMA and in the United States to give us a better picture of how our EMA compares to other places.

The Planning Council and AACO use the information from the survey to improve services and to better understand PLWH’s experiences and challenges. The Planning Council uses this information when they decide the EMA’s service priorities and how the EMA’s funds will be budgeted. AACO uses this information in the HRSA grant applications and in other reports. We have heard that HIV service providers use this information when they write grant proposals and in planning their programs. 

We couldn’t have done it without you

This survey would not be possible without the support of Ryan White service providers. We send them our appreciation. But our biggest thanks are reserved for the individuals who shared their personal information and sometimes painful stories with us. We are grateful for your trust and vulnerability. We will use this information as best we can to continue to provide quality services to the people living with HIV in our EMA.

The full report is available here. 

Linking Clients to Care: A New Tool

It's a common enough story: someone is diagnosed with HIV. That person is told she needs to visit the doctor as soon as possible. Maybe that person calls for an appointment, and maybe she doesn't - but that person doesn't make it to the doctor that week. Or that month. It could be a child care problem, or a transportation problem, or an appointment availability problem.

But in some cases, it's just that people who were just diagnosed with HIV don't know that there is a system of care available to them -- even if they can't pay for services. In 2010, 18% of newly-diagnosed Philadelphians with HIV weren't linked to care within 90 days. We don't know each person's reasons for not getting medical care right away, but lack of knowledge of the care system is an obvious barrier for newly-diagnosed clients. In fact, through our local needs assessments, we've repeatedly found that many people living with HIV/AIDS report not accessing medical care because they couldn't afford it. We're lucky enough to have a comprehensive system of services available through Ryan White, but newly-diagnosed clients won't know about it if no one tells them it's there.



Here's a preview. Download a copy here.

At the same time, we know that it's not always easy for HIV testers to give consistent messaging while getting important information from their clients.  Enter, our new linkage to care tool. We hope that this tool will relieve some of the burden on HIV testers, increase access to care and other services for newly-diagnosed people with HIV, and improve linkage to care performance for our local provider sites.



We developed this tool after an extensive review of treatment readiness assessments in use across the country, and reduced the questions to the most relevant ones for helping clients with their initial linkage to care.  It was developed in partnership with the Points of Integration Workgroup, which spent a great deal of time honing both the language and the questions.  The tool was then presented to both the Philadelphia EMA Ryan White Part A Planning Council and the Philadelphia HIV Prevention Planning Group for additional feedback and adjustments.

We would like to note that we developed this tool as an aid for providers, and we designed it to help individual HIV testers improve access to services for their clients (and, by extension, to improve their own performance). This tool was not designed for data collection. Testers might decide to make copies and use a separate form for each client, in order to provide an “at a glance” summary of what is most needed to make that first linkage.  They might use pieces of this tool as a supplement to their own routines.  They might keep a copy with them to use as a discussion guide.  How they use the tool is up to them, but we do hope that it proves useful in their day-to-day work.

Of course, like all of our documents, this is free to distribute and reproduce.  We made it in black and white to be copier-friendly. We also included fainter lines in the notes section, allowing the neater testers among us to write along the lines and the more out-of-the-box testers to write willy-nilly in whatever direction they choose. We wanted this to be as user-friendly as possible. In that spirit, we welcome feedback and suggestions. Feel free to comment here, or use the contact information on the form to get in touch.

Download the linkage to care tool here - and share widely!
 

Quick Notes on the Uninsured

I was lucky enough to be a part of a 2-day training on health reform (Affordable Care Act/Obama Care) earlier this month and got some great information and resources that I will be sharing with you faithful readers over the next few blog post. Most of the information I'll share is collected and provided by Enroll America, a nonprofit dedicated to making sure every uninsured American knows about the increased coverage options under the ACA. You can find all sorts of community and consumer education materials at Get Covered America. Let's start off with understanding who are the uninsured and how we can reach them.

Guess how many uninsured Americas know about the expanded coverage options under health reform (ACA, Obama Care)?

22%. 78% of uninsured Americans have no idea of their expanded coverage options under health reform. They have no clue. We have to change that.

Graphic from Enroll America Presentation Materials.

Who are the uninsured?

Minorities in America are more likely to be uninsured than are Whites/Caucasians. Men are more likely to be uninsured than women. People living in poverty are more likely to be uninsured than those with more income, with an exception being those working but earning low income, who earn too much for safety net programs and not enough to make health insurance affordable. These low income workers also often work jobs part time or their employers do not offer health insurance. Most people who are uninsured are not uninsured by choice. They do not health insurance either because they can't afford it or because they are excluded because of a previously diagnosed health condition (diabetes, heart disease, HIV, cancer, etc.). Many have been uninsured for more than 2 years (67%).

How do people feel about insurance?

Almost all the people surveyed by Enroll America thought health insurance is important (91%). Cost and affordability are the biggest barriers to health insurance for people. Many of the uninsured have shopped for insurance in the individual insurance markets, outside employer offered insurance (44%). They found this experience stressful, confusing and frustrating. They want health insurance, for financial and health security, but have no real options under the current system.

How do we reach the uninsured?

People have some misconceptions about the uninsured, one might be that they are not online because of affordability or access to technology. We can see by the graph below, that the uninsured are using the internet and smart phones just like other Americans. We can use social media and technology to reach different segments of the uninsured to get the word out about enrollment and insurance coverage options. 

But even well-connected and savvy internet users prefer to do somethings offline. Shopping for and enrolling in insurance is one thing many prefer to have in-person assistance with, rather than to go it alone online. According to Enroll America's survey, 75% of uninsured people who are newly eligible for coverage would prefer in-person assistance for enrollment.  So this is where Certified Application Counselors, Navigators and other in-person assisters are going to be key to getting all eligible Americans enrolled in health insurance.

In our next installment we will explore the messages that will work best to help people get informed and enrolled. 

 

Town Hall Survey Now Online!

This is an exciting time of year around the Office. Our yearly town halls are underway! We'll be visiting Morton and Solebury in the PA Counties, Camden and Bellmawr in New Jersey, and two different agencies in Philadelphia. (Our first town hall, at Action AIDS in Philly, is starting in just an hour and a half!) This is the time for people living with HIV/AIDS in the Philadelphia area to speak out about their HIV services. The Planning Council uses this information in setting priorities for the entire Philadelphia EMA.

This year, the Needs Assessment Committee and the Office of HIV Planning are working on a brand new way to gather data from PLWHA in the area. Our online consumer feedback survey was just launched! This new tool will provide PLWHA that are unable to attend the town hall meetings a way to let their voices be heard. If you are a provider of HIV services in the Philadelphia area, please get this link to your clients. The more positive people we hear from, the better we can plan services!