We are pleased to announce that the August 2007 features were written expressly for Data Matters! These original pieces authored by the Washington State Mental Health Transformation Evaluation Team highlight the state’s efforts to truly partner with consumers, family members and youth in the evaluation process, to cultivate family leaders, to improve the lives of children and families, and to promote mental health transformation. If you are interested in contributing to a future edition of Data Matters, please contact Lan Le at ltl5@georgetown.edu. Enjoy the special features! We look forward to your comments!
Partnering with Consumers and Family Members in Evaluation Research Experiences from Washington State’s Mental Health Transformation Project
Eric J. Bruns, University of Washington
Cindy Willey, Washington Institute for Mental Illness Research and Training
Ken Stark, Washington State Mental Health Transformation Project
Ron Jemelka, Washington State Mental Health Transformation Project
Read
Comments | Post Your Own Comment
 Slowly but dramatically, principles of mental health service delivery are shifting. In the past decade, statements from the World Health Organization, U.S. Surgeon General, Institute on Medicine, and President’s New Freedom Commission on Mental Health have all supported the once-radical idea that consumers, youth, and families should exert control over their own health and mental health care. Consumer perspectives on recovery are now widely accepted in policy, and recovery principles increasingly are being used in practice. In children’s mental health, the notion of families as active partners and drivers of their child’s service delivery is now accepted as a central characteristic of service delivery.
| |
Resources: |
Complementary Articles:
Washington State’s Consumer and Family Evaluation Mini-Grant Program: A New More Active Frontier in Participatory Evaluation
by Maria Monroe-DeVita, Cynthia Willey, Jill M. SanJule, Ken Stark & Ron Jemelka
While active partnership between researchers and mental health consumers and families hasn’t always been as collaborative as it could be, Washington State has recently risen to this challenge in several pioneering ways. One specific approach has been the initiation of an innovative pilot program as part of the Washington State Mental Health Transformation Project’s evaluation efforts. This initiative – the Consumer and Family Evaluation Mini-Grant Program – originated out of the urgent need to meaningfully engage consumers and families in evaluation research. As part of their Transformation Project Evaluation, Washington State wanted to go beyond simply convening a group of consumers and families to vet evaluation questions or take an advisory approach. We wanted to establish roles for consumers and family members with significant decision making authority and ensure that evaluation projects were completed on topics and in areas that were perhaps not addressed by the main Transformation Evaluation design. Each of the seven Mini-Grant grantees is now in the process of completing their funded evaluation project with the assistance of TA coaches.
Consumer Input into the Washington State Resource Inventory & Needs Assessment
The evaluation workgroup for the Washington State mental health transformation grant consisted of professional researchers and consumers. Mental health consumers who have real life experience with the state-funded mental health system were deeply involved in carrying out the research underlying this report. They carried out most of the consumer interviews. They used their networks and personal knowledge to create the snowball samples for the underserved consumers. At a different level – the consumers are an integral part of the research workgroup. They helped to 1.) develop the concept of multiple voices; 2.) design the sampling plans; 3.) design the interview formats; 4.) critically evaluated and pushed the team as a whole towards clarity and realistic interpretations of the findings. Without the consumer presence on the workgroup, the entire report would have been different. It is difficult for any of us on the evaluation workgroup to imagine any mental health transformation evaluation team working well, without the experience and knowledge of people who know the system from the inside out.
The Voices: 2006 Washington State Mental Health Resource & Needs Assessment Study
Additional Resources:
Consumer, Youth, and Family Member Partnership in Evaluation
This document presents a sample invitation to consumers and family members to join the Washington State Mental Health Transformation evaluation team. It presents background on the importance of such partnerships, the type of work that is conducted, and what participation would require.
Youth Partnership in the Transformation Evaluation Team: An initial plan
This document presents an example of a plan developed by the Washington State Mental Health Transformation evaluation team and a group of youth leaders to begin to better partner with youth in evaluation activities.
In-Depth Youth, Family Member, and Consumer Interview Project
by Beverly Miller, Cindy Willey, Eric J. Bruns, Phoebe Mulligan, April Sather, Ken Stark & Ron Jemelka
The In-Depth Youth, Family Member, and Consumer Interview Project aimed to complement the collection of data received via consumer phone interviews and agency administrator and Regional Support Network interviews by gaining perspectives from consumers of mental health services about the current state of the mental health system and needed improvements. The project also served as a means for Washington State’s mental health transformation grant to live up to its goal of meaningful involvement of consumers in research and data collection, as all interviewers employed in the project were current and former consumers of mental health services. The intent of the project was also to get perspectives from persons who experience mental health problems who either (1) do not access supports from the formal mental health system, or (2) were likely to be underrepresented in other data collection. The goal for data collection was to inform planning and program development and ultimately to improve the quality of mental health services delivered in the state.
Building and Maintaining Consumer Organizations: Using Evaluation to Support Consumer Delivered Services
by Cindy Willey & Eric J. Bruns
This Power Point provides an overview of research and evaluation methodology, touches on why research and evaluation are relevant for consumers and families, gives a historical context to consumer-led evaluation, and offers examples of consumer-led evaluation. |
|
| |
|
But what about active partnership in research and evaluation? Certainly, this is a logical extension of the philosophical shift to services that are youth-guided and consumer- and family-driven. And it is not a new concept. For many years, advocacy movements have consistently reinforced the importance of consumer, youth, and family input in all aspects of research, evaluation and policy. Nearly 30 years ago, Prager and Tanaka (1979) offered this conclusion to a report on involving consumers and families in evaluation:
Representing the consumer’s perspective on the meaning of mental illness and the correlates of ‘getting better,’ the process of client involvement in evaluation design and implementation is not only realistic and feasible; it is, we feel, a professional necessity whose time is overdue (p. 51).
Unfortunately, the research and evaluation field has not consistently taken up this challenge. Though many researchers (and those who employ them) would certainly give lip service to the idea of “participatory evaluation” that involves all stakeholders from the design of the project to its reporting and application, this is more the exception than the norm. In the real world, the costs (whether it is loss of control, expenditure of resources, or the extra time involved) are apparently not viewed as being outweighed by the benefits. This is unfortunate, because the benefits of full partnership of consumers, youth, and families in research and evaluation are significant:
- The range and relevance of topics selected for research and evaluation projects will be increased when consumers, youth, and family members participate in setting the research agenda.
- There will be a greater development of the research base on consumer- and family-driven services and other programs of interest to consumers and families.
- The technical merit of evaluation protocols will be improved when consumers, youths, and families help determine the variables of interest, design interview tools and measures, and participate in “test driving” the protocols from the outset.
- Criteria for success in evaluations will be outcomes that are important to actual consumers, youth, and families.
- Conclusions and interpretations will be more valid when individuals who are grounded in the experiences being studied are partners in the process.
- The likelihood that results and findings will be used is enhanced when important stakeholders such as families, youth, and consumers participate throughout the process, and help determine how to disseminate and use the findings.
In Washington State, actively promoting consumers, youth, and family members as evaluators (as part of a team or as independent researchers) is also viewed as a mechanism for achieving the goal of strengthening the consumer and family member infrastructure in the state. Facilitating consumer- and family-driven research will increase their level of expertise, and help transform the mental health system to one in which consumers, youth, and families can partner more fully with administrators, policy makers, and researchers.
Putting the principles to practice:
Washington State’s Mental Health Transformation Evaluation
From the outset, Washington State’s Mental Health Transformation State Infrastructure Grant (MHT-SIG) project has referenced the potential power and benefits of consumer and family partnerships in research and evaluation. Among other things, Washington’s initial grant proposal to SAMHSA included the following components:
- That the Comprehensive Mental Health State Plan would be informed by focus groups and in-depth face-to-face interviews with consumers, youth, and family members that were conducted by and interpreted by consumers, youth, and family members.
- That a consumer and family evaluation “mini-grant” program would be implemented that afforded consumer and family organizations resources to do research on topics of interest to them.
- That a “Family and Consumer Evaluation Team” (FACET) would oversee the success of Mental Health Transformation and an overall research and evaluation agenda regarding Washington’s Transformation effort.
We invite you to read the in-depth articles and to examine resources related to all three of these components of Washington’s mental health transformation initiative. Through these efforts and several others, the state is attempting to conduct and promote evaluation that lives up to the principle of full consumer and family partnership, and to ensure the MHT-SIG project will benefit in the ways described above. Perhaps most importantly, it is recognized that this commitment is first and foremost about adhering to the principle of consumer, youth, and family partnership in all aspects of service delivery, policy, and research.
Prager, E. & Tanaka, H. (1979). New research in mental health. Columbus, OH: Ohio
Department of Mental Health.
If you would like to learn more, please contact Ron Jemelka, jemelrp@dshs.wa.gov, from the Washington State Mental Health Transformation Project or Cindy Willey, ckw4@u.washington.edu, from the Self Help Empowerment and Evaluation Alliance (SHEEA).
What
are your thoughts (submit comments below)?
|
