A wave of consumer-driven initiatives over the last decade has shattered a long tradition of treating people who are currently or formerly homeless merely as passive objects of research, policy, and services.
Susan Barrow, PhD, from the NY State Psychiatric Institute in New York, NY and several colleagues reviewed these initiatives and their implications in the article “Consumer Integration and Self-Determination in Homelessness Research, Policy, Planning, and Services” (Barrow, McMullin, Tripp & Tsemberis, 2007). Though the article encompasses consumer integration broadly, the authors include concrete strategies for consumer integration in research.
Meaningful consumer integration in research has implications that are three-fold. On an individual level, consumers can experience personal growth and self-confidence as well as practical skills. When carried out with organizational support, integration of consumers “adds to the relevance, validity, and sensitivity of homelessness research” (Barrow, McMullin, Tripp & Tsemberis, 2007, p. 37).
These initiatives have emerged during an era of reduced social spending and ever-widening disparities in wealth, health, and housing. At the same time, market principles have penetrated healthcare and public services. These principles have demanded increased attention to cost saving, outcomes-based management, and evidence-based practices. As the authors point out, however, consumers have reframed demands for personal responsibility into an emphasis on agency and choice. The mental health recovery paradigm is also challenging assumptions about consumers’ capabilities, and consumer-run program models are being developed and tested.
With all of these changes taking place, the homelessness field is well-suited for genuine consumer integration, which is “both the right thing and the smart thing to do (Barrow, McMullin, Trip & Tsemberis, p. 6).” Smart because it has positive effects on service outcomes, consumer wellbeing, and cost effectiveness, and right because it advances equity and social justice.
Consumer integration in research is distinguished from consumer “tokenism” or “involvement.” For example, consumer tokenism in research might be characterized by including one or two consumers who are expected to represent all consumer perspectives. Consumer integration, on the other hand, would have consumers assigned to key positions including management, research staff, or membership on steering committees or oversight boards. While consumer integration in research is a relatively new concept, some promising models are being developed.
The Substance Abuse and Mental Health Services Administration (SAMHSA) offers one such model. SAMHSA’s mandate emphasizes consumer involvement in all aspects of programmatic and research activities. A few years ago, SAMHSA made consumer involvement a condition of funding for its multi-site study of the Homeless Families Program. One outcome of this policy was a detailed guide for consumer participation in local research projects. The box below contains the summary of concrete strategies from that guide.
Strategies and Mechanisms Used to Foster Consumer Integration in the SAMHSA Homeless Families Program
(Reprinted from Barrow, McMullin, Tripp & Tsemberis, 2007, p. 9)
Federally mandated consumer participation and support
* Coordinating Center consumer staff
* Consumer included in all aspects of programs
* Federal project officers address integration barriers
Financial support to cover consumers’ expenses
* Payments for time and expertise
* Travel advances covering travel and childcare costs
* Coordinate work of consumer panel
* Consumer liaison for researchers and consumers
* Study recruiters, interviewers, trackers, and data entry
* Identify and address travel barriers
* Hotel check-in without credit cards
* Alcohol free rooms and receptions
Consumer panel meetings
* Share strategies to overcome integration barriers
* Develop recommendations for steering committee
* Small group discussions with federal project officers
Steering committee meeting logistics
* Define research jargon as used
* Allowing time for consumer questions and input
Bridge communication and cultural gaps
* Trainings by consumers on study topics
* Continually addressing integration barriers
* Forum on hiring consumers as research staff
Communication between meetings
* Staff identified to address consumer integration
* Hard copies of emails and materials sent to consumers
* Monthly conference calls to review study materials
Reducing turnover and increasing retention of consumers
* Mentoring of new consumers
* Development of consumer advisory boards
* Cross trainings on study topics
* Research methods and how to read and interpret data charts
Reference: Barrow, S., McMulllin, L., Tripp, J., and Tsemberis, S. (2007). Consumer integration and self-determination in homelessness research, policy, planning, and services. Paper presented during Toward Understanding Homelessness: The 2007 National Symposium on Homelessness Research, March 1-2, 2007. Available by clicking here.