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in+care Newsletter   Dec 2011  


National Campaign to Improve Retention in HIV Care
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In This Issue
Monthly Update
Upcoming Events
Journal Spotlight
Lessons Learned from the Cross-Part Collaborative
Campaign Updates
Number of providers and sub-providers that have joined the Campaign:


Number of HIV patients served by participating providers (not unduplicated):
Number of providers who submitted Campaign indicator performance data in Dec 2011:
Number of patients who were entered in the Campaign database in Dec 2011:

Next data submission deadline:

February 1, 2012

Enter your data at: incarecampaign.org/database

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


Monthly Update

We are now two months into the Campaign and the National Quality Center (NQC) is thrilled to report that new providers continue to join with each passing week. The Campaign has registered 383 participants, representing 318 individual providers from 193 cities in 44 states and territories impacting the lives of up to 416,138 people living with HIV. This truly is a national initiative and we are proud to have you as part of this ambitious HIV public health campaign.


If you had an opportunity to participate in the Kick-Off Webinar, we learned that roughly 1 in 8 people living with HIV who were seen in the first half of 2010 at participating sites were lost to follow-up and unreachable by the beginning of 2011. These data are based on close to 50 submissions of the Retention Follow-up Tool by fellow Campaign participants, representing close to 31,000 patients. Luckily, we also learned about strategies that have been successfully employed by a range of sites. You can read about the Retention Pool Follow-up and Lessons Learned at www.incarecampaign.org under Resources.


We have received the first round of Campaign performance data submissions, and we are looking forward to contacting sites that submitted data and improvement updates in the coming weeks.  Additionally, the HRSA HIV/AIDS Bureau and NQC are looking forward to beginning local conversations with Campaign participants by convening local groups. Many peer providers across the country have stepped forward to volunteer as Quality Champions to convene these local Campaign meetings. We are still seeking Quality Champions, specifically in the Central Plains and West Coast regions. Take a leadership role in this important national initiative today by signing up to become a Quality Champion! Learn more at www.incarecampaign.org or email incare@nationalqualitycenter.org.


Upcoming Events  

+ in+care Campaign Office Hours | Every Mon & Wed

We are happy to introduce regularly scheduled Office Hours for in+care Campaign participants to directly communicate with NQC staff and consultants. Callers can ask general questions, request technical assistance or engage in dialogue about the Campaign.


Office Hours will be held from 4-5pm ET on:

  • Wednesday, January 4th
  • Monday, January 9th
  • Wednesday, January 11th

Dial-in#: 866.394.2346
Participant Code: 4182576142#


+ Meet the Author: Dr. Thomas Giordano
Thursday, January 12, 2012 at 12:00pm ET

Dr. Giordano will summarize this recent retention article and answer questions by webinar participants.

Giordano, TP. "Retention in HIV care: what the clinician needs to know." Top Antivir Med. 2011;19(1):12-16. http://www.ncbi.nlm.nih.gov/pubmed/21852711


Dial-in#: 866.394.2346
Participant Code: 3971546368#

To register:



+ January in+care Webinar

Wednesday, January 18, 2012 at 12pm ET


Agenda: Peer Success Story from the Field, Review of December Data and Improvement Update Submissions, Improving Communication Between Medical Case Managers and Medical Providers


Dial-in#: 866.394.2346
Participant Code: 3971546368#
To register:



Keep up-to-date with the latest in+care events through our webpage: http://incarecampaign.org/index.cfm/75283

Journal Spotlight: Retaining HIV-Infected Patients in Care: Where are We? Where Do We Go From Here?

Horstmann, E., J. Brown, F. Islam, J. Buck, & B. Agins. "Retaining HIV-Infected Patients in Care: Where Are We? Where Do We Go from Here?" Clinical Infectious Diseases (2010); 50: 752-761.


This article published in 2010 reviews current literature and research regarding retention and engagement in HIV medical care. The authors provide a framework for defining retention and discuss the issues that need further research to fully understand its role.


Horstmann et al. reflect on the many ways retention is measured in the literature, identifying three distinct areas: missed appointments; medical visits at regularly defined intervals; and a combination of these methods. However, the authors cite inconsistency in what kinds of visits (e.g., primary care, specialty care, phlebotomy) are included or excluded in determining retention.


Further, an alternative approach to retention explores categorical classification of people living with HIV into 3 user groups. These include:

  1. Regular Users - complete medical appointments at least every 6 months; are not "no shows" for any scheduled primary care appointments.
  2. Sporadic Users - complete at least 1 appointment per year; are "no shows" for at least 2 primary care appointments and use an HIV urgent care clinic at least once a year.
  3. Nonengagers - complete initial visits but do not return.

Horstmann et al. point to the usefulness of such classification because it allows a targeted approach based on client engagement and helps to identify the best measures to determine retention in care.


Using these classifications in a September 2003 presentation on AIDS in New Orleans, Dekker et al. reported on the distribution of a clinic population and found that 25% were regular users, 32% were sporadic users, and 43% were nonenagers. Multiple sources have found that missed appointments and, thus, nonengagement in care include common demographic and clinical characteristics in these patients:


  • Race (specifically African-American)
  • Younger age
  • Heterosexual orientation
  • Less education
  • Lack of health insurance
  • Lower household income  


  • Higher CD4 cell count
  • Absence of an AIDS diagnosis
  • Detectable viral load
  • AIDS-defining CD4 cell count 

Although the clinical characteristics seem contrasting, the authors point to the fact that patients generally do not seek medical care when feeling well and patients who are very ill do not attend medical appointments because they feel too sick. Horstmann et al. also reference studies indicating the most common reasons for missing appointments were forgetting, conflicting appointments, or feeling too sick to attend. In a qualitative study, Mallinson et al. also found that becoming a Regular User required decreasing structural and practical barriers to care (i.e., stigma, transportation, food, housing, health literacy).

The review highlights models within the HIV field and other diseases to retain persons in medical care. Successful strategies are those that have a multipronged approach such as reminder calls before an appointment, updating patients' contact information, phone calls by peer educators after 3 consecutive missed appointments, patient navigation team, case management, social support, and connection to mental health services. Improving the retention of persons living with HIV will reduce costs, impact the health of the individual, and improve public health outcomes.

Lessons Learned from the Cross-Part Collaborative

The in+care Campaign has an amazing nationwide representation of HIV providers across 44 States and U.S. Territories. However, you might be wondering, how do I connect with these providers, who are the providers participating in my own community and how do we work together to achieve more.


From October 2008 through April 2010, five State teams (CT, NJ, PA, TX and VA) with representatives from all Ryan White HIV/AIDS Program Parts worked on the HIV/AIDS Quality Management (QM) Cross-Part Collaborative. Together they created a model that can provide key innovations-and answers-on quality improvement initiatives across provider sites and States. In particular, they found three keys to success: 1) supporting alignment; 2) joint capacity building; and 3) sustainability.


Supporting Alignment

  • Form subcommittees with statewide representation to jointly tackle work
  • Create online space for sharing statewide quality management resources
  • Distribute Cross-Part newsletters to share performance data and improvement activities
  • Celebrate successes and obtain buy-in through a "signing ceremony" of the jointly developed statewide quality management plan

Joint Capacity Building

  • Establish a buddy system for providing peer technical assistance to each other
  • Offer trainings/technical assistance to improve data quality
  • Create joint statewide provider and consumer trainings
  • Share successful improvement strategies and innovations related to statewide quality improvement project that focuses on specific aspects of HIV care
  • Take advantage of already existing training offerings (e.g., TOT, TQL, regional trainings)


  • Schedule meetings well in advance
  • Create Cross-Part staff positions that are jointly funded
  • Ensure a process is in place to update the Cross-Part plan, performance measurement strategies, and quality improvement projects
  • Engage agency senior executives and stakeholders and keep them routinely informed
  • Bring in consumers at the beginning of cross-agency improvement activities

The lessons learned through this Cross-Part Collaborative have helped inform the way NQC is launching the in+care Campaign. We've learned that patience and perseverance are important-and integral-to reaping the best results. Involving stakeholders in the planning process is invaluable. Sharing data and providing individualized feedback on QM activities whenever possible increases effectiveness as does successful sharing of peer practices. Planning ahead helps sustain momentum and overcome barriers. As a community of learners, we're so excited to apply what we've learned as we move ahead on this Campaign and to continue to learn more as we work together to improve patient care and patient health outcomes.

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

incareCampaign.org  |  212-417-4730