Boote, J., Telford, R., & Cooper, C. (2002). Consumer involvement in health research: A review and research agenda. Health Policy, 61(2), 213-216.
The Department of Health in the United Kingdom now explicitly requires that consumers be involved in health research. This article presents a review of the current state of involving patients and families in research. It also sets out a research agenda for the systematic study of the conceptual framework, outcomes, measurements, and best practices related to consumer involvement.
Browne, J. V., Sanchez, E., Langlois, A., & Smith, S. (2004). From visitation policies to family participation guidelines in the NICU: The experience of the Colorado Consortium of Intensive Care Nurseries. Neonatal, Paediatric and Child Health Nursing, 7(2), 16-23.
Fourteen NICUs in Colorado worked collaboratively with each other and with families to revise their policies regarding family presence in the NICU. Over a six year period of collaboration and education, the policies changed in a number of ways including decreased use of authoritative language, changed concept of families as visitors to that of participant's in their infant's care, and increased in amount of time families can be present in the NICU.
Crawford, M. J., Rutter, D., Manley, C., et al. (2002). Systematic review of involving patients in the planning and development of health care. BMJ, 325, 1263.
This study investigated the outcomes of involving patients and families in the planning and development of health care. They conclude that involving patients has resulted in changes in the way services are delivered across a range of settings but more research should be conducted to determine effects on quality, health status, and satisfaction.
Giachello, A. L., Arrom, J. O., Davis, M., et al. (2003). Reducing diabetes health disparities through community-based participatory action research: The Chicago Southeast Diabetes Community Action Coalition. Public Health Report, 118(4), 309-323.
The Chicago Southeast Diabetes Community Action Coalition consisted of community residents, community providers, and a local university who teamed up to combat the high rate of diabetes morbidity and mortality in Chicago's underserved minority neighborhoods. Using a participatory action research model, all coalition members were prepared and supported to be involved in planning, implementing, and evaluating the work. This article describes the project from beginning to end including outcomes and next steps.
Hibbard, J. H. (2003). Engaging health care consumers to improve the quality of care. Medical Care, 41(1): I61-70.
Hibbard has developed a conceptual framework for evaluating the manner in which patients and families are involved in improving the quality of care. The framework consists of three roles informed choice; coproducer; and evaluator. This article provides a review of the outcomes related to health care quality for each of these consumer roles. Hibbard argues that all three are key to enhancing quality, yet currently patients and families are being given opportunities to serve in the informed choice role significantly more than either the coproducer or evaluator role.
Sodomka, P. (2005, May). Leadership for Family-Centered Care. Presented at the Institute of Family-Centered Care's educational program for the Leadership Team, Womack Army Medical Center, Fort Bragg, NC.
The MCG Health System in Augusta, Georgia has positive outcomes in clinical areas where they have made an explicit commitment to patient- and family-centered care and involved patients and families in planning, implementation, and evaluation of policies, programs, professional education, and facility design. For example:
The MCG Neuroscience Center of Excellence, reported positive outcomes over two to three years including:
- Patient satisfaction increased from the 10th to the 95th percentile.
- Length of stay decreased by 50%.
- Discharge rate (volume) increased by 15.5%.
- Medical errors reduced by 62%.
- Staff vacancy rate dropped from 7.5% to 0%.
- A waiting list of staff wanting to work on the unit.
- Positive change in perceptions reported by physicians, staff, and house staff.
The Breast Health Center's patient satisfaction scores went from the 40th percentile to the 74th in the first year of operations, and are now over the 90th percentile.
Vander Stoep. A., Williams, M., Jones, R., Green, L., & Trupin, E. (1999). Families as full research partners: What's in it for us? The Journal of Behavioral Health Services and Research, 26(3), 329-344.
The authors describe their experiences with using a participatory action research framework to design and conduct evaluation of children's mental health services in one county in Washington State. The challenges and benefits of including all stakeholders, particularly families, in the evaluation process are discussed. They propose guidelines for those interested in involving families in evaluation and research efforts.
Williams, M., Vander Stoep, A., Green, L., Jones, R., Trupin, E. (1999, February). King County Blended Funding Project Pilot Evaluation Results. Presented at the 12th Annual Research Conference. A System of Care for Children's Mental Health: Expanding the Research Base; University of South Florida; February 22, 1999; Tampa, FL
This presentation summarized the results of the Children's Mental Health Program King County Blended Funding Project. Results after year one included an increase in community connections and peer support for children and families. After year two, the proportion of children living in a community home setting increased from 24 to 64%. Children attending a school in the community increased from 48% to 84%, and the average cost of care decreased by $1,166 per child per month.