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in+care Newsletter

Issue 22

National Campaign to Improve Retention in HIV Care
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In This Issue
Consumer Engagement
Provider Spotlight
Journal Spotlight

14 days

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Data - National Averages*

(as of 10/10/13)

Gap Measure
(158 sites, 118,885 patients)


Visit Frequency Measure
(149 sites, 100,413 patients)


New Patient Measure
(150 sites, 5,654 patients)


Viral Load Suppression
(155 sites, 139,066 patients)


*data not unduplicated
Website Updated!

 The in+care Campaign has recently updated its website to make searching for Retention Strategies and Tools easier for you! Visit the website today to explore the new area!

Quick Links

Campaign Headquarters

National Quality Center (NQC)

New York State Department of Health AIDS Institute


90 Church Street, 13th floor
New York, NY 10007


Work: 212-417-4730
Fax: 212-417-4684


New Patient Retention in+care


This newsletter issue examines how to improve linkage to care for newly diagnosed patients. Literature has shown that persons not immediately connected to care are a vulnerable population: they are more likely to suffer from morbidity and mortality, partially because they are less likely to be consistently engaged in care, even after entry into the system.  Campaign webinars focusing on linkage to care that explored some of these considerations can be accessed here.
If you have implemented retention improvement strategies focusing on linkage to care and you would like to share with the Campaign, please spend five minutes to report them at this link.
Upcoming Events
+ in+care Campaign Webinar | The Transgender Experience and Retention in HIV Care
Wednesday, November 20, 2013 | 1pm ET
Agenda: Join us as Cyndee Clay of HIPS in Washington, DC discusses issues at play for the transgender community regarding the HIV care continuum. In addition, Clay will share strategies the HIV service provider community can try to improve retention in care for people of transgender experience.
Please note that no prior registration is needed to participate in this webinar. Just click the webinar link to join and enter the room as a guest. Type your name when prompted to enter the webinar room. If you have any questions, comments or concerns you would like addressed during the presentation, please send them to Michael Hager in advance (Michael@NationalQualityCenter.org).
Dial-in Number: 866.394.2346
Participant Code: 394 154 6368 #
Webinar URL:


+ in+care Campaign Webinar | State-Level Efforts to Link New Patients to HIV Care
Wednesday, December 4, 2013 | 2pm ET
Agenda: Linking people with HIV into care takes a village. There is a great deal that individual provider agencies can do to link and retain people with HIV to medical care, but even more can be accomplished when the providers work together and especially when state and city networks implement strategies across their funded providers. The state of Ohio will share its state-level efforts to link new patients into HIV care in this call.
Please note that no prior registration is needed to participate in this webinar. Just click the webinar link to join and enter the room as a guest. Type your name when promoted to enter the webinar room. If you have any questions, comments or concerns you would like addressed during the presentation, please send them to Michael Hager in advance (Michael@NationalQualityCenter.org).
Dial-in Number: 866.394.2346
Participant Code: 394 154 6368 #
Webinar URL:
+ Partners in+care Webinar | SPNS Projects Examine Retention in+care for HIV-Infected Transgender Individuals
Tuesday, December 10, 2013 | 2pm ET
Agenda: In 2012, HRSA funded a new SPNS project examining retention in HIV care among transgender women of color. During this webinar, JoAnne Keatley from the Center of Excellence for Transgender Health at the University of California at San Francisco will provide an overview of the issues faced by this community with regard to their retention in HIV care. In addition, Dr. Freddy Molano from Community Health Network of New York, NY will discuss specific interventions medical providers can try to improve their transgender patient retention in care. The webinar will conclude with a panel discussion on this topic involving both consumers and providers.
Please note that no prior registration is needed to participate in this webinar. Just click the webinar link to join and enter the room as a guest. Type your name when prompted to enter the webinar room. If you have any questions, comments or concerns you would like addressed during the presentation, please send them to Michael Hager in advance (Michael@NationalQualityCenter.org).
Dial-in Number: 866.394.2346
Participant Code: 397 154 6368 #
Webinar URL:

+Next Retention Measures Submission Date
December 2, 2013



+ Next Improvement Update Form Submission
December 15, 2013
Keep up-to-date with the latest in+care events through our webpage: http://incarecampaign.org/index.cfm/75283


What's Next for the in+care Campaign?

The Campaign's active phase will be transitioning to a sustaining phase as of January 1, 2014. Even though the Campaign's newsletters and webinars will slow down, the Campaign is here to stay! You'll still be able to submit your retention performance data online and receive benchmarking reports for the years to come. News and important content related to the in+care Campaign will be shared and disseminated through the NQC eNewsletter and the ongoing monthly NQC TA Calls. Starting in January 2014, focus will shift to highlight the results of all your hard work and to feature community providers that have shared retention improvement strategies they have put in place at their agencies. 

Consumer Involvement Spotlight - Consumer Involvement at the Network Level
Consumer involvement is an important component of quality-related activities. At the agency level, there are many opportunities for involving consumers. However, it can be a bit more challenging - but no less rewarding - to support active consumer involvement at the network level.

Jane Caruso, an NQC coach and the former Ryan White Part D Director in New Jersey, has worked with various networks of providers. As part of this work, she has identified ways to support consumers as they engage in quality activities at the network level.
To participate effectively at the network level, consumers need prior experience, which they get at the agency level. Working within an agency, they can learn how to effectively provide input and have an opportunity to build other skills, such as how to use data to measure performance. Of course, experiences can vary depending on the staff within the agency and the agency's resources. Based on Jane's experience, it is often a single person within an agency who really drives consumer involvement, devotes time to support consumers' efforts, and makes sure resources are also available to cover things like transportation to meetings.

Even after they have honed their skills at the agency level, participating at the network level can be a big step for consumers. Contributing at the network level can take the consumer outside his/her comfort zone.
While consumers may have felt empowered at the agency level, they may need additional support to encourage their full participation on a network-level quality management team.

The hard part is identifying which consumers should participate. Those that are most eager to participate or the perennial "squeaky wheel" may not provide the best input. They need to understand how to be an effective member of a group and be able to look at the big picture.
"If you have one strong consumer to lead, others will follow," advises Jane. "Consumer involvement is absolutely contagious. But there has to be a spark-a leader for them to follow."

Consumers also need to have a certain level of understanding in health numeracy to make the move to the network level. According to Jane, the first step is having a good grasp of their personal data and what it means: they need to understand a run chart of their viral load and what it means if it is overlaid with their medications. Next, working at the network level may require that the consumer looks at that same data through a different lens. For example, they now need to understand lab values on a community level and what it tells them about areas for improvement.

Based on her work with networks, Jane emphasizes that when looking at initial engagement and subsequent retention in care, consumer participation on network-level quality management teams has proven critical.

"When consumers have input on a quality management project that seeks to improve ongoing retention, their personal experiences contribute to the successful design and implementation of strategies used at their own clinic or in other clinics within their network," says Jane. "The best part of consumer participation at the network level is the sharing of personal stories, successes, and challenges that can all lead to improvement for the rest of the patient population. Their perspective complements what the data tell us." 
Provider Spotlight - Newly Diagnosed Patients | Linkage to and Retention in HIV Care

Depending on the nature of their services, Ryan White grantees are taking a variety of approaches to linking newly diagnosed individuals to care, supporting retention, and re-engaging patients that are lost to care. A critical element to the success of these services is that they are tailored both to the organization and to the needs of the patient populations. Below are examples of how to grantees are working to support linkage, retention, and re-engagement. Both have used quality improvement activities to guide their efforts.

Cooper University Health Care Early Intervention Program (Cooper EIP), Camden, New Jersey
Cooper EIP provides multidisciplinary services to approximately 800 patients per year. Offering a comprehensive array of services, including HIV testing, all at one site plays an important role in supporting linkage and retention. Currently, for established patients the retention rate is 85 percent.
Patient navigation for new patients and those lost to care is an important component of the program. The on-site testing services, which include a rapid test to confirm infection, allow the navigator to link patients to care quickly, within 24-72 hours. To support ongoing retention, the program provides transportation support, which is one of the greatest barriers to patients returning to care. Reminder phone calls are made three days before appointments and letters are mailed to patients that miss appointments.  New patients and those lost to care are provided immediate access to services-no appointment necessary. The centralization of services is also an important aspect of the program. For example, phlebotomy services are provided on site.  Patients do not have to go to another facility, where they might face additional barriers to care such as co-payments and may once again face the challenge of transportation.

The program has also conducted quality improvement activities to assess patient satisfaction and make services more user-friendly.  These activities are coordinated by the full-time performance improvement outcomes manager.  "Workouts" are conducted, which involve staff dialogs about barriers related to specific services. Based on findings, workflows are developed to improve the patient experience. For example, staff explored the clinic's reception area. Given the large number of services offered, the reception area was extremely congested. A more streamlined process was developed to ease in take.  The process of scheduling appointments was separated from the front office to remove the bottleneck that often occurred at the front desk,

A challenge recently faced by the program was major staff turnover over the course of a year.  It took time for new employees to adjust to the new work environment and co-workers.  It also took time for patients to develop a comfort level with new employees. Filling vacancies as quickly as possible helped to address this challenge.

Ohio Department of Health
Ohio has long recognized the critical role of engaging, retaining and re-engaging Ohioans with HIV in appropriate care services. While counseling and testing services sites have referred people who test positive to Ryan White case management and HIV care providers, an increasing number of newly diagnosed individuals needed more assistance to transition into care.

Efforts to connect newly diagnosed individuals to HIV care revolve around linkage to care (LTC) coordinators. There are eight full-time and one half-time LTCs based in local health departments and hospital emergency departments. The LTC positions were initially funded in January 2013 but the Ryan White Part B program has funded several Early Intervention case managers for several years. While the Ohio Department of Health (ODH) has a standard linkage protocol, local health departments tailor their activities to address needs within the community.

An annual needs assessment required by the Ryan White grant found that HIV data are stored in many databases in Ohio. The databases did not align with one another. Durther, it is not easy to use the databases in real time to identify people who are lost to care. ODH recognized the need to provide easy access to a single data system that would allow linkage to care coordinators to identify people who needed to be linked or re-engaged in HIV care and store information about the services provided to these individuals. 

In 2013, ODH's was approved but not funded by CDC to build a bridge among its data systems. Despite this setback, ODH committed funding to develop a solution to link information from CAREWare, HIV surveillance, and partner notification service databases.  The new system is called the Linkage and Re-engagement in HIV Care (LARHC) database.  HIV care, prevention, surveillance, and care subject matter experts worked closely with IT staff in developing the LARHC database. A collaborative contribution of both in-kind and real funding is supporting to the implementation of the LARHC database. 

ODH expects that the LARHC database will be available to staff providing linkage to care assistance or case management in 2014. Performance measures and assignment details of retention and re-engagement activities have not been finalized. In particular, ODH is still looking at which staff will primarily be used to reach out to patients that have been lost to care (e.g. Ryan White case managers, surveillance, disease intervention specialists). Most likely, the LTC coordinators will play a significant role since the skills they use to link newly diagnosed individuals to care can also be effective in re-engaging patients. In the new system, each patient will be given a unique identifier to facilitate tracking.

Journal Spotlight - Linking HIV-Positive Adolescents to Care in 15 Different Clinics Across the United States: Creating Solutions to Address Structural Barriers for Linkage to Care


Morgan M. Philbin, Amanda E. Tanner, Anna DuVal, Jonathan Ellen, Bill Kapogiannis, J. Dennis Fortenberry , AIDS Care (2013): Linking HIV-positive adolescents to care in 15 different clinics across the United States: Creating solutions to address structural barriers for linkage to care, AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV, DOI: 10.1080/09540121.2013.808730


The Centers for Disease Control and Prevention (CDC) estimates that 26 percent of HIV infections occur among youth ages 13-24 and there are currently over 100,000 adolescents living with HIV in the United States. Research indicates that young people have lower rates of retention in care-which is associated with higher mortality.


While all people living with HIV may face barriers to care, barriers may be more daunting for young people. Typically, young people have less experience with the health care system, which makes navigating fragmented care systems extremely difficult. They also may face legal or regulatory issues that require disclosure of their status to parents.  In addition, few HIV services are specifically designed to address the unique needs of young people who may have ongoing dependence on families for resources, health insurance, transportation, and access to clinics and pharmacies


The National Institutes of Child Health and Human Development, CDC, and the Adolescent Medicine Trials Network for HIV/AIDS Interventions (ATN) developed an initiative designed to improve linkage to care (LTC) for HIV-positive adolescents.  The initiative focuses on improving collaboration with local health departments and community partners.  The key feature of the LTC intervention is outreach workers solely dedicated to facilitating adolescent LTC.


As part of the initiative, researchers conducted a study to explore the barriers to HIV care experienced by young people. They analyzed data from 124 semi-structured qualitative interviews collected between February2010 and October 2011 from 15 ATN clinics across 13 cities.  The researchers interviewed physicians, nurses, linkage to care outreach workers, social workers, case managers, and program staff.


The researchers identified barriers to care, which can occur at various levels throughout the health care delivery system-the macro-, meso-, and micro-levels. These different categories are identified by the Dynamic Social Systems model, which emphasizes the social and dynamic quality of structural factors that influence HIV programs.


Within this model, macro-level barriers relate to the sociopolitical, economic, and cultural context, as well as larger social institutions that shape linkage to care. The macro-level barriers identified include: health insurance access and coverage, transportation to appointments, and the sharing of client-level contact information between testing agencies, local health departments and clinics.


Meso-level barriers relate to systems within organizations that are directly involved with patients such as lack of youth friendliness within a clinic and duplication of linkage services.  Micro-level barriers relate to the immediate social and physical context (i.e., direct interactions between individuals).  These included readiness for care and adolescent developmental capacity.


The researchers identified solutions to some of the barriers identified. For example, ATN sites began providing transportation for appointments, establishing space specifically designated for young people within the clinic, and funding clinic visits and test costs with other sources (e.g., grant funds) while waiting for insurance approval. Staff also stressed the importance of maintaining contact with young people through texting or other methods and providing incentives for ongoing contact. Providing staff training to raise awareness and sensitivity to young people is also important.


"Youth friendliness is a key component for care linkage and engagement for HIV+ adolescents. It includes a variety of factors, such as improving communication and data sharing between organizations to facilitate the 'seamless' transition between diagnosis and treatment," says Dr. Amanda Tanner of the University of North Carolina Greensboro, Department of Public Health Education. "Once adolescents get into care, ensuring that clinic staff are trained around adolescent development and behavioral issues and creating a space that isn't pediatric focused so that adolescents and young adults feel comfortable can support their ongoing engagement."


The researchers noted, however, that solutions are often informal, using micro-level solutions to address macro-level barriers. Comprehensive initiatives to improve linkage to, and engagement in, care and designed to address the unique needs of young people are essential. These initiatives should focus on solutions matched to the level of the structural barriers.



Connect. With patients.
Collaborate. With a community of learners.
Change. The course of HIV. 

incareCampaign.org  |  212-417-4730