What is a good way to include people who use services in service planning?

van Draanen J, Jeyaratnam J, O’Campo P, Hwang S, Harriott D, Koo M, Stergiopoulos V. Meaningful inclusion of consumers in research and service delivery. Psychiatric Rehabilitation Journal 2013; 36 (3): 180-6. 

Issue: People who use mental health and homelessness services are generally excluded from related service planning and research project design.

What we did: At Home/Chez Soi was a national research project exploring the effectiveness of Housing First programs* for people facing both homelessness and mental illness. The Toronto site of At Home created a People with Lived Experience Caucus as a project advisory body to guide the work of the management team, as well as the service and research teams. We worked with Caucus members to review related documents and interview Caucus members, service providers, and researchers about their experiences working with/in the Caucus.

Findings:

Our study and experiences generated lessons around the Caucus model, including the need to:

  • Establish the Caucus at the beginning of a project, before big decisions have been made.
  • Consider a directly representative model in which the Caucus is made up of current study and/or program participants. While the Toronto At Home Caucus consisted of people who, at one time, could have qualified for the study, they were not study participants, and did not always feel they could speak for study participants.
  • Create a transparent selection process for Caucus members.
  • Clearly define roles of Caucus members, including attendance and participation.
  • Establish a common language that all parties can relate to and understand.
  • Offer additional facilitation supports during the group development phase.
  • Include skilled facilitation at each meeting, and ensure people with lived experience are given equal opportunity to voice opinions.
  • Consider paying Caucus members for their time and expertise.
  • Create multiple opportunities for researchers and providers to hear from people with lived experience.

The study also identified strengths of the Toronto At Home Caucus, which included:

  • Caucus advocacy resulting in changes like raising honoraria for Treatment as Usual research participants and media training for research participants.
  • Caucus resources like transit fare, food at meetings, cell phones, computers, internet and phone bills and training on topics like teamwork, communication and diversity.

* Housing First is a program approach that offers people facing both homelessness and mental health problems access to stable housing and supports. While treatment is offered, housing does not come with conditions around treatment or substance use.

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