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Current Projects
IWP Process Evaluation
2008-2010: NY State Health Foundation/Bronx Lebanon Hospital Center/Martin Luther King Jr. Health Center
The Intensive Wellness Program (IWP) is an enhanced primary care program designed specifically to serve Medicaid patients who are at the greatest risk of repetitive, high cost utilization of medical care. The Bronx-Lebanon Hospital Center (BLHC) and the Martin Luther King Jr. Health Center, (MLK), a federally qualified primary care clinic affiliated with BLHC, jointly run the IWP. In the IWP, primary care and mental health care are offered conjointly, through a co-located team of clinicians including Family Medicine, Psychiatry, Social Work, Advance Practice Nursing, and Community Health Workers. In addition to primary care and behavioral health services, the IWP provides: (1) comprehensive multidisciplinary assessment; (2) community outreach; and (3) intensive patient tracking and case management. The IWP program, housed in its own building, provides an easily accessible and comfortable physical space uniquely for the targeted patients. The IWP is located in the South Bronx New York. EDC will carry out a process evaluation to describe the core elements of the IWP and patient perceptions about the program. The process evaluation will draw on program and patient records as well as in-depth interviews with IWP patients. A summary of the findings from the process evaluation will be useful to the IWP program planners to help them to improve the provider training and program implementation. Additionally, the process data will help to describe and explain the impact of the IWP on the care of Medicaid patients from the perspective of the patients.
Promoting Self-Management: CF as a Model Case
2007-2010 National Institutes of Health/National Institute of Child Health and Human Development
This project will conduct qualitative research with adolescents with CF and their parents to discover and document barriers to and facilitators of self-management, use this knowledge to complete development of an innovative intervention to promote self-management, and then conduct a formative evaluation of the intervention. The Peer Group Intervention will incorporate the crucial element of personal meaning, which we hypothesize will lead to more robust effects than prior interventions based solely on constructs from social cognitive theory. Adolescents with CF will be asked to actively express their experiences with their disease and treatment regimen through the creation and sharing of illness and self-management narratives. Adolescents will participate in an online virtual community, which will “meet” monthly for six months to exchange and discuss video portraits which the teenagers will create in-between the scheduled online community meetings. Through these videos and online meetings, the teens will show and tell how they carry out various time-consuming and complex CF self-management tasks and reflect on the meaning and impact of the disease and its treatment regimen on their personal goals, quality of life and sense of self. Intervention Mapping, a systematic planning process for intervention development that specifies procedures for integrating theoretical constructs and empirical evidence, will guide development of the intervention.
Toward Optimal End-of-Life Care in the PICU
2005-2009: National Institutes of Health/National Institute of Nursing Research
The overall goal of this multi-site study is to gain insights into how dying and death are experienced in the pediatric intensive care setting and to advance research methods in pediatric palliative care. The study will take place in the PICUs of Nationwide Children’s Hospital of Columbus, the Children’s Hospital of Philadelphia, Lucile Packard Children’s Hospital of Stanford Medical Center, Vanderbilt University Children’s Hospital, Children’s Mercy Hospital of Kansas City, and the University of California, San Francisco Children’s Hospital. In addition, during the first phase of the project, Children’s Hospital Boston and Johns Hopkins Children’s Center are serving as sites for the reliability and validity testing of a new measure of the quality of dying and death in the PICU setting.
Initiative for Pediatric Palliative Care: Creating a Lasting Institutional Infrastructure
2006-2009: Aetna Foundation, Inc.
The Initiative for Pediatric Palliative Care (IPPC) has conducted research, provided technical assistance to facilitate quality improvements, and designed a 25-hour instructional curriculum and six-part award-winning video series. Four national partner organizations (the New York Academy of Medicine, the National Association of Children’s Hospitals and Related Institutions, the Society of Pediatric Nurses, and the Association of Medical School Pediatric Department Chairpersons) have reviewed the curriculum and provided program planning guidance. Seven leading children’s hospitals piloted the curriculum and undertook major quality improvement projects in pediatric palliative care. IPPC has been conducted 19 educational retreats for 2,000+ families and caregivers throughout the United States. Our goal is to equip hundreds of interdisciplinary leadership teams from pediatric hospice and palliative care programs with the knowledge, skills and attitudes they will need to be palliative care leaders and teachers in their home institutions and communities.
Informing Participants in the National Children’s Study
2005-2009: National Institute of Child Health and Development (Subcontract from Booz Allen Hamilton)
The National Institute of Child Health and Development (NICHD) is launching a landmark study that will approach 400,000 women to seek their interest in participating in the National Children’s Study. Ultimately, the NCS hopes that 100,000 women and their children will be enrolled and followed until the children are 21 years of age. This will be an historic study, akin to – and far larger than – the Framingham Heart Study. Booz Allen Hamilton and the NICHD have turned to CAE for innovative ideas about how best to ensure that women understand the roles, obligations, risks, and benefits of participation. CAE is building an innovative, interactive electronic tool to provide prospective participants with the information necessary to make an informed decision regarding participation.
Project on Adult Care in Cystic Fibrosis (PAC-CF)
2003-2010: National Institutes of Health/National Institute of Heart, Lung, and Blood
EDC is collaborating with ten Cystic Fibrosis Centers across the country on a study whose purpose is to improve the quality of life and care of adults with cystic fibrosis (CF) by gathering empirical data on the quality of life, the symptom experience, the patterns of care, and the needs of adults with CF and their families as their illness progresses. This longitudinal panel study of adult with CF employs three methods of data collection: (1) self-administered mail-out, mail-back surveys of adults with CF and a family member or friend closely involved in their care, (2) telephone interviews with adults with advanced CF, family members of adults with CF who die, and physicians, and (3) medical record abstraction. Recruitment of adults with CF to participate in the study was completed in May, 2005 with 333 adults enrolled.
Program to Enhance Relational and Communication Skills (PERCS)
2002-2009: The Argosy Foundation (Subcontract from Children’s Hospital Boston)
Initiated in collaboration with Children’s Hospital Boston, PERCS is an educational program for house staff, medical residents, nurses, and allied health professionals focused on improving communication and relationship-building skills with children and families. The one-day workshop includes interviewing of simulated patients, video feedback, personal and professional debriefing, and didactic presentations in pediatric palliative care and communication principles. This workshop continues to be offered on a monthly basis, and has been attended by over 150 practitioners. The educational philosophy and teaching strategies are highlighted in a videotape being disseminated nationally as part of the Initiative for Pediatric Palliative Care curriculum. The program is currently being expanded and adapted for use in neonatal intensive care units.
NIH Bioethics Science Curriculum Supplement for High School Biology
2006-2008: National Institutes of Health
The National Institutes of Health awarded CAE a grant to develop a Bioethics Curriculum Supplement for High School Biology. The overall purpose of this Supplement and teacher guide is to introduce students to bioethics as a field of inquiry, to introduce key ethics concepts (such as the principles of justice and truthtelling) and to enable students to develop ethical reasoning skills, so they are capable of moving beyond “gut reactions” to more nuanced arguments. These ethics concepts and skills will be the ones to which they will return in each of the six lessons developed, applying and practicing the concepts and skills across the curriculum.
Is Primary Care Ready to Utilize the Promise of Genetics? A Vignette Study
2006-2009: Oregon Health & Science University
One of the promises of genomic research is that information about a genetic disease or risk will increasingly provide the basis for screening and prevention to reduce morbidity and mortality. As a result, much of the meaningful medical action stemming from genetic information will take place under the auspices of primary care providers, underscoring the similarities rather than differences between genetic and other medical information. However, there is a crucial way in which genetically based management is different from other medical interventions: The identification of a genetic disorder or risk raises the question of risk for family members and with it concerns about rights and obligations in regard to disclosure of genetic risk information. From the viewpoint of bioethics, there is an implicit tension between rights of privacy and a putative moral obligation to disclose genetic risk information. A similar tension is found in the law between concerted efforts to preserve genetic privacy, with genetic privacy laws passed or proposed in most states and on a national level, and concurrently, a small, but potentially seminal, number of legal cases that suggest a health care provider may have a legal duty to share genetic risk information. This project considers these questions using a vignette survey method administered to health care providers (general internists, nurse practitioners, genetic counselors) and health care consumers ("naive" consumers and consumers "experienced" with a genetic disorder in their family). The research will identify barriers, both ethical and pragmatic, to the ethical and efficient deployment of genetic information to improve health outcomes.
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