SummaryThe Prevention and Access to Care and Treatment (PACT) Project was a community-based program committed to improving health outcomes for marginalized and underserved human immunodeficiency virus (HIV)-positive individuals in Greater Boston. Specially trained community health workers delivered culturally competent, home-based support services to help patients prioritize their health care concerns, adhere to medication schedules and medical appointments, communicate with providers, and negotiate complex social issues such as poverty and substance abuse that negatively affect their ability to manage their disease. Program participants significantly reduced their HIV viral load and inpatient utilization and costs. Most patients stayed in the program, and clinicians reported high levels of satisfaction with the services provided by the community health workers. As of December 2013, the PACT program was discontinued due to lack of funding.Moderate: The evidence consists of pre- and postimplementation comparisons of viral loads and inpatient utilization and costs, along with postimplementation data on retention and anecdotal reports on provider satisfaction.
Developing OrganizationsBrigham and Women's Hospital; Partners In Health
Date First Implemented1998
Race and Ethnicity > Black or african american; Hispanic/latino-latina; Vulnerable Populations > Impoverished; Racial minorities; Urban populations
Problem AddressedDespite significant advances in treatment for HIV/AIDS (including the growing availability of highly effective medications), the impact of the disease continues to rise within low-income and urban communities. Black and Latino communities are disproportionately affected.
- Higher rates of illness and death: Blacks represent about 13 percent of the U.S. population but account for almost one-half (49 percent) of the people who get HIV and AIDS, making it a leading cause of death among blacks.1 In Roxbury, MA, one of the communities within PACT's service area, an HIV-positive black woman was 15 times more likely to die from AIDS than an HIV-positive white man in 2004.2
- Barriers to care that lead to premature death: Urban blacks and Latinos with AIDS often do not live as long as people of other races and ethnicities with AIDS, due in part to societal barriers that make it difficult for them to navigate the health care system and adhere to complex drug regimens. These barriers include poverty, mental illness, substance abuse, domestic violence, homelessness, and the social stigma associated with HIV/AIDS. Traditional approaches to treatment of HIV-positive individuals often do not take these factors into consideration, resulting in a system of care that routinely fails to reach these vulnerable populations.
Description of the Innovative ActivityPACT's team of community health workers delivered culturally competent, home-based care and support services to low-income individuals living with HIV/AIDS in inner-city Boston. The program aimed to improve health outcomes and quality of life by helping these individuals navigate the complex network of social and medical issues that negatively affect their ability to manage the disease. Key elements of the program included the following:
- Patient eligibility and referrals: Medical providers referred HIV-positive patients to PACT if the patients were considered to be failing under standard health care practices. Referred patients had to have CD4 counts (a measure of immune system strength that is usually above 1,000 cells/microliter [uL]) of less than 500 cells/uL on their most recent blood draw and viral loads (VLs) (a measure of HIV strength in the body, with a target measurement of less than 50 copies/uL) of more than 1,000 copies/uL on at least two blood draws in the past year. They also had to have a history of nonadherence to antiretroviral therapy.
- Culturally competent services, delivered by community health workers: Ethnically and linguistically diverse community health workers who lived within the program service area in Greater Boston provided culturally competent services to participants. These individuals were familiar with the social issues faced by participants and thus were often better able to establish the trusting relationships that were key to the program's success. Because the threat of intense social stigma was a major barrier to seeking and maintaining HIV/AIDS treatment within black and Latino communities, the encouragement and support of someone with shared cultural knowledge often proved useful in empowering patients to manage their disease, including adhering to medication regimens.
- Initial and ongoing training: PACT provided newly-hired community health workers with 64 hours of didactic, curriculum-based education and skills-based training, including how to work with clients, communicate with health care providers, navigate and arrange social services, and encourage adherence to prescribed treatment regimens. Various local agencies, including the Boston Public Health Commission's Community Health Education Consortium, AIDS Action, AdCare Hospital, Bureau of Substance Abuse and Services at the Massachusetts Department of Public Health, and the New England AIDS Education and Training Center, supplemented the training through additional sessions. New community health workers also completed 3 weeks of field-based training, shadowing seasoned staff members on home visits. After this initial training, staff continued to receive clinical and programmatic training and supervision on a regular basis.
- Community health worker service model, based on need: Community health workers delivered home-based care and support services on a monthly, weekly, or daily basis, depending on the needs of each patient. For all program participants, community health workers provided education on adherence to prescribed treatment regimens, emotional support and counseling, accompaniment to health care and social service appointments, assistance in communicating with caregivers, and general help navigating the health care and social service systems. These services were personalized to address the individual goals of each patient, as well as the goals of referring physicians or providers.
- Educational curriculum and materials: Community health workers used PACT's health promotion and harm reduction curriculum, a module resource delivered to participants over an ongoing period. The curriculum was designed to build patient knowledge and skills and to address issues of social support, self-efficacy, and harm reduction. Program participants tracked their progress and record reflections in a corresponding patient workbook, which is theirs to keep.
- Directly observed therapy: In addition to regular visits from community health workers, directly observed therapy specialists were assigned to patients who require daily visits due to more serious health problems or greater difficulty in adhering to their antiretroviral medication schedule. Directly observed therapy specialists visited patients once a day to provide direct assistance with medication compliance, including intensive support to help overcome common barriers, such as depression, substance abuse, and social isolation.
Context of the InnovationThe PACT program was sponsored by the Division of Global Health Equity at Brigham and Women's Hospital, a teaching affiliate of Harvard Medical School located in Boston's Longwood Medical Area, and Partners In Health, a Boston-based, nonprofit organization working internationally on global health issues. In 1997, the Boston Public Health Commission reported data suggesting rising incidence and mortality for HIV/AIDS among low-income blacks in Boston. After years of successfully using a community health worker model at sites worldwide, Partners In Health responded to these data by launching PACT as a grassroots case management initiative directed at underserved individuals in inner-city Boston. The project became affiliated with Brigham and Women's Hospital in 2001. Information provided in December 2013 indicates that the PACT program was discontinued due to lack of funding.
ResultsAs of November 2012, the PACT project served approximately 390 patients. Pre- and postimplementation comparisons of a sample of these show that participants had significantly reduced their HIV viral load and inpatient utilization and costs. Postimplementation data suggest that most patients stay in the program, while anecdotal reports suggest high levels of clinician satisfaction with community health workers.
Moderate: The evidence consists of pre- and postimplementation comparisons of viral loads and inpatient utilization and costs, along with postimplementation data on retention and anecdotal reports on provider satisfaction.
- Sustained improvements in immune system: A 2009 analysis of 118 PACT patients showed a median increase in CD4 count from 154 to 255 cells/uL after 1 year of participation. Because only patients with CD4 counts less than 200 are considered to have AIDS, this rise represents a reversal of the AIDS diagnosis for the average participant. In addition, 51 percent of participants achieved a sustained undetectable viral load 1 year after initiation of PACT services. In the 2012 analysis of 148 PACT patients, median CD4 rose from 148 cells/uL at baseline to 268 cells/uL after 1 year of participation. In addition, 56 percent of participants achieved or sustained undetectable viral load (<75 VL) 1 year after participation in PACT. (Updated November 2012.)
- Fewer hospitalizations and lower costs: A 2006 analysis of hospital billing records shows that inpatient days fell by 35 percent, while hospital costs were cut in half after enrollment in the program.3 An analysis revealed that 2 years after enrollment in PACT, regardless of the dose of the intervention received, total medical expenditures dropped at least 35 percent in a cohort of 68 HIV/AIDS patients referred to the program as high risk and failing standard care. This decrease in cost is attributable to a significant decrease (61.9 percent) in hospitalization spending.
- Increased use of appropriate pharmaceuticals: Patients' increased adherence to antiretroviral treatment is supported by the increase in overall pharmaceutical costs and the specific drug class costs.
- High levels of participant retention: Since July 2003, 58 percent of PACT participants remained in the program for at least 1 year, with a median length of participation of 16 months (updated November 2012).
- Satisfied providers: Physicians and clinic staff who worked with PACT community health workers anecdotally report high levels of satisfaction with their services. Many reported gratitude for the role community health workers play in helping their patients maintain medication schedules and improve health outcomes. They also commented on the importance of community health workers in modeling effective communication skills and appropriate provider/patient relationships.
Planning and Development ProcessKey steps in the planning and development process include the following:
- Utilizing experience of parent agencies: PACT benefited in its early stages from the expertise of Partners In Health, which piloted successful community health worker models in Haiti and Peru. PACT developers took applicable elements from these existing models and adapted them for use in an urban American setting.
- Recruiting staff: PACT's initial team of community health workers were local activists recruited as a result of their involvement in another Partners In Health–sponsored community action initiative known as Soldiers of Health. Focused on violence prevention and health care access in inner-city Boston, Soldiers of Health engaged local residents in meetings and activities designed to improve the community's health and safety. A group of these local activists who were particularly interested in the rising impact of HIV/AIDS on their community stepped forward to serve as PACT's first community health workers. Initially volunteers, they worked for a small stipend until PACT was able to secure funding for salaries.
- Obtaining initial funding: In February of 1998, the Office of Minority Health provided seed money that allowed PACT to begin serving patients.
- Refining the model over time: In 2001, PACT staff realized that the majority of their patients were already receiving services from multiple case managers and, as such, were in need of more integrated services and health care navigation. PACT refined the initial model, transitioning it from case management to a more medically focused approach, using community health workers to deliver home-based services supporting health promotion and harm reduction. In 2003 to 2004, in response to the requirements of some persistently ill participants who did not seem to be benefiting from the program, PACT made further refinements by developing the existing three-tiered model of service.
- Creating educational and training materials: Using knowledge gained by community health workers in the field, PACT staff designed a 20-module health promotion and harm reduction patient curriculum. Community health workers met regularly to share best practices in an effort to make the curriculum as user-friendly and interactive as possible. In addition, PACT developed a staff training manual, drawing on the expertise of medical students, PACT program managers, and community health workers. Recently, PACT received an National Institutes of Health grant to review and revise both the curriculum and the training manual using a community-based participatory research process involving community health workers, patients, and medical experts.
- Previous activities: In June 2011, PACT staff completed the training and technical assistance engagement with Network Health (a Massachusetts Medicaid managed-care organization) in which community health workers were integrated to enhance primary care for their 10- to 15-percent highest cost and most medically complex patients at Cambridge Health Alliance. In 2010, PACT completed its contract with Codman Square Health Center in Dorchester, MA, where community health workers were integrated for the care of their highest-risk diabetic patients. Following the trial, Codman has incorporated the diabetes community health workers into ongoing work with their patients. PACT also assisted the University of Miami's Jay Weiss Center to recruit and train community health workers for two National Institutes of Health–funded randomized, controlled trials focused on HIV/AIDS and diabetes.
- Starting a new pilot project: Information provided in November 2012 indicates that in 2013, PACT will assist two community-based organizations in integrating community health workers toward the creation of “health homes” as well as help incorporate community health workers into a new integrated care organization care management initiative for high-risk, dual-eligibles in Massachusetts.
- Other activities at existing sites: As of November 2012, PACT continues its ongoing training relationships with the New York City Department of Health and Mental Hygiene and Navajo Nation in Shiprock, New Mexico. In New York City, PACT is supporting the city's HIV/AIDS Bureau to implement and support the PACT community health worker model across 28 Ryan White–funded hospitals, clinics, and community based-organizations. In New Mexico, PACT is collaborating with the Navajo Nation and the Indian Health Services' Project COPE to train their existing community health representatives to provide advanced medical accompaniment across the reservation. In Massachusetts, PACT provided training and technical assistance to the Department of Public Health. It helped implement six adherence forums for medical case management programs around Massachusetts and New Hampshire. Moreover, PACT provided mentorship of an HIV case management-funded housing program for an intensive 10-topic medical case manager training and technical assistance for their clinical program manager to enhance skills in adherence to medications and medical care. In Lynn, PACT provided 14-topic core community health worker training; this involves nurses and a social work supervisor who will spearhead Lynn’s development of a complex care management program that includes community health workers. Lastly, PACT worked with the Massachusetts General Hospital Care Management Program as they piloted the community health worker role this year to complement their nurse/social worker care management model for Medicare patients. PACT also provided a 14-topic core community health worker training to Mass General's newly-hired community health worker and community health worker supervisor who serve one of the hospitals' high-risk community health center cohorts.
Resources Used and Skills Needed
- Staffing: Six full-time community health workers each carried a case load of 20 to 25 patients, with 1 to 5 patients receiving directly observed therapy. The program also employed a program manager, clinical supervisor, program assistant, and research assistant.
- Costs: Data on the upfront development costs (e.g., to develop the education and training materials) are not available. As of December 2010, the program cost approximately $6,000 per HIV/AIDS patient per year. Despite this cost, there remained a net savings of at least 15.73 percent following enrollment in PACT due to lowered hospitalization and other medical costs.
Funding SourcesNational Institutes of Health; Office of Minority Health; Brigham and Women's Hospital; RX Foundation; Blue Cross Blue Shield Foundation; Lynch Foundation; Yawkey Foundation; Broadway Cares/Equity Fights AIDS; Hyams Foundation; Ittleson Foundation; Sunfield Foundation; Partners In Health; Tufts Foundation
Getting Started with This Innovation
- Seek out and cultivate partnerships: Relationships are needed with established and, if possible, locally based health care and community organizations that can provide funding or resources or share lessons from prior initiatives.
- Recruit local, knowledgeable, dedicated community health workers: Individuals who live within the community are better able to provide culturally competent service to patients. Select staff who are knowledgeable about the social and medical barriers facing HIV-positive community members and who are passionate about helping improve their health outcomes.
- Search broadly for funding: Identify and seek funding from both national and local stakeholders, including foundations that support the reduction of health disparities among people living with HIV/AIDS or other chronic conditions.
Sustaining This Innovation
- Seek sustainable funding sources: Sustainable sources of funding, such as payer reimbursement for program services, are critical to the long-term viability of the program. Without them, community health workers will always be vulnerable to salary reductions, job reassignments, or cuts.
- Maintain strong management: Managerial staff should be clinically and programmatically sophisticated enough to address the needs of a marginalized and medically complicated patient population.
- Continually seek "buy in" from staff and affiliated providers: Periodically educate staff and coordinating physicians and caregivers on the program to ensure that they understand and support the community health worker model. To ensure long-term success, all involved must accept community health workers as a core component of the care team and engage them respectfully and professionally.
- Monitor program outcomes: Measuring and documenting activities and results help to stimulate continuous improvement until desired health outcomes are achieved.
Spreading This InnovationThe New York City Department of Health and Mental Hygiene relied heavily on PACT training and technical assistance in its development of a new care coordination and adherence intervention for patients with HIV rolled out to health centers and hospitals. In Miami, the University of Miami at Jackson Memorial Hospital-Jay Weiss Center's Infectious Diseases/HIV Clinic adapted PACT's HIV Health Promotion community health worker model for their marginalized HIV patients with the poorest health outcomes. PACT has also partnered with Codman Square Health Center in Dorchester, MA, to extend its model to the care of people with diabetes.
Contact the InnovatorHeidi Behforouz, MD
Division of Global Health Equity
622 Washington Street, 3rd floor
Dorchester, MA 02124
Phone: (617) 474-8500
Fax: (617) 474-8535
Innovator DisclosuresDr. Behforouz reported having no financial interests or business/professional affiliations relevant to the work described in the profile, other than the funders listed in the Funding Sources section.
References/Related ArticlesPACT Project Web site. Available at: http://www.brighamandwomens.org/Departments_and_Services/medicine/services/socialmedicine/pact.aspx.
Partners In Health USA/PACT Project Web site. Available at: http://www.pih.org/where/USA/USA.html.
Onie R, Farmer P, Behforouz HL. Realigning health with care. Stanford Social Innovation Review. 2012; 10(3). Available at: http://www.ssireview.org/articles/entry/realigning_health_with_care.
Arya M, Williams LT, Stone VE, et al. A key strategy for reducing HIV in African American communities: promoting HIV testing. J Natl Med Assoc. 2010;102(12):1264-6. [PubMed]
Arya M, Behforouz HL, Viswanath K. African American women and HIV/AIDS: a national call for targeted health communication strategies to address a disparity. AIDS Read. 2009;19(2):79-84, C3. [PubMed]
Behforouz HL, Chung J. Poor, black, and female: the growing face of AIDS in the United States. In: Murthy P, editor. Women's global health and human rights. Sudbury, MA: Jones & Bartlett Publishers; 2009.
Hart JE, Jeon CY, Ivers LC, et al. Effect of directly observed therapy for highly active antiretroviral therapy on virologic, immunologic, and adherence outcomes: a meta-analysis and systematic review. J Acquir Immune Defic Syndr. 2010;54(2):167-79. [PubMed]
Mukherjee JS, Ivers L, Leandre F, et al. Antiretroviral therapy in resource-poor settings. Decreasing barriers to access and promoting adherence. J Acquir Immune Defic Syndr. 2006;43 Suppl 1:S123-6. [PubMed]
Original publication: November 24, 2008.
Original publication indicates the date the profile was first posted to the Innovations Exchange.
Last updated: January 15, 2014.
Last updated indicates the date the most recent changes to the profile were posted to the Innovations Exchange.
Date verified by innovator: December 09, 2013.
Date verified by innovator indicates the most recent date the innovator provided feedback during the annual review process. The innovator is invited to review, update, and verify the profile annually.