Science-Based Service User Input, PLEASE?

If you want to avoid doing business as usual,
you actually have to hear service users’ input

An article found in Anthropology & Education Quarterly explains the core problem with good service user input. It explains how even projects and people that may have the best intentions of listening still block people out. Basically, it says that coalitions are based on mainstream funding sources and mainstream moderators, and that tend to override the ability to hear challenges to the status quo. They called this “centering forces,”  that pull people back to their viewpoints and silence their critics.

The Anthropology research article says, “[Our] process that was explicitly committed to undoing an approach to community change that, in the perspective of all participants, had done little good for the community and in fact had done much harm. These efforts to undo “business as usual” had resulted in serious attempts to be not only inclusive of residents in the planning and implementation of the CCL intervention but also in fact give them majority voice in major decisions.”

In this article, the researchers found that despite everyone’s best intentions, the service user input advocates still weren’t heard. They said, “[We could] account for loss of voice in terms of….processes that are often tacit and effectively invisible to participants as they act. Specifically, we suggest that orientation to the centering practices of particular institutions—in this case, bureaucratic institutions that are tied up with obtaining and providing funding—resulted in the recontextualization of contributions that might threaten the norms and values that are privileged by those centering institutions.”

So this article points out that

1. Even a project does include recovery movement advocates in the planning process
2. Even if they give advocates a majority voice for decision making
3. And even if they had given medical harm aware advocates a full share of implementation planning

THEN even still ‘business as usual” might happen. Because of structural forces related to service user input projects. If the funding source and the project management is mainstream, the project will draft back to the status quo no matter how well people intend to follow good service user input processes. And very, very few projects actually include the three steps above.

This is something very important to consider. Even if peers, and all types of peers, were fully and evenly and intentionally included, the research says that even then the mainstream view of mental health could well have prevailed. Simply because of the institutions that were in charge of funding and conducting the process. Even with full peer engagement, professional domination can derail the service user input that people are trying to create.

So what is to be done about this?

A call for the using the academic literature on effective service user input:

“[Many mental health funders and mental health care providers] are willing to invest millions of dollars in product development, clinical training, design and building of facilities, ect. But often leave vital processes of community engagement to trial and error. Rigorous qualitative research methods, including focus groups and key informant interviews, and ethnographic investigations could provide an empirical basis for theory-based interventions. [We could look at] diffusion of innovations and social marketing strategies to support successful fieldwork and preparation on the part of trial investigators and to develop best practices in engagement with local communities.

“Do such measures guarantee success? No more than a product’s reaching a phase III clinical trial guarantees success. But it would be unheard of – moreover unethical and illegal – to launch a candidate for [mental health care intervention] in a phase III trial without rigorous science, including phase I and phase II trials behind it. We might similarly aspire to evidence and rigor in designing and initiating strategies for community engagement.”

Adapted from Peter Newman, The Lancet: vol. 367 p. 302, “Towards a Science of Community

Dr. Larry Davidson, a professor of Psychiatry and Director of the Yale Program for Recovery and Community Health at Yale School of Medicine says “Most innovation is done by peers. That is where everything in mental health is advancing right now, the programs related to peer run services. An agency’s ability to innovate directly correlates with their ability to gather peer input.” But to be effective, peer input needs to be gathered in a different and intentional structure. Dr Davidson offers the following suggested structure:

Standards for Individual Consumer and Youth Involvement (excerpt)

1. You are informed about what you might expect and possible outcomes of the services and/or supports available to you or your loved one. This includes effects and side effects of treatments being considered.
2. You are informed about all alternatives and options of treatment including those available through other agencies or organizations.
3. You are involved in all decisions about you, your treatment goals, and your recovery plan including the services and/or supports you will use.

Agency Level (excerpt)

1. Agencies inform consumers about what they can expect and possible outcomes of the services and/or supports available to them. This includes effects and side effects of treatments being considered.
2. Consumers and family members/fiends involved in the person’s care (to the extent that the consumer is comfortable) are informed about all alternatives and options of treatment including those available through other agencies or organizations.
3. Consumers are involved in all decisions about their care, treatment goals, and recovery plan including the services and/or supports being proposed for use.

System Level (excerpt)

1. Systems establish and hold to standards for the active and meaningful involvement of consumers, youth and families in quality improvement activities at all levels of the system.
2. Systems ensure that consumers, youth and families comprise at least 51% of representatives on all boards, steering and advisory councils, and workgroups making decisions about evaluations of the quality of care provided by the system.
3. Systems ensure that consumers, youth and families are partners in the development and review of new policies and legislative initiatives.

And there are many more recommendations as well:

SAMHSA’s 2010 guidebook: Building Bridges: Mental Health Consumers in Intergenerational Dialogue Says, “”Work to reduce stigma and discrimination. Educate people on wellness. Use arts to empower and engage. Mentor, engage, and include youth advocates for mental health alternatives. Create history and archive of youth and adult advocacy efforts. Make youth mental health care available. Reframe illness as wellness and use public health approach. Promote mental health as part of overall health. Include youth in conferences.”

The Alliance for Justice’s 2004 guidebook, “Investing in Change: A Funder’s Guide to Supporting Advocacy” says, “Funders should expect advocates to push them. Permission: Give grantees permission to bug them. Engagement: Ask advocates for input and support them. Education: Teach social service agencies to do advocacy. Strategy: Increase agencies’ effectiveness. Action: Look at larger systemic issues. Evaluate of Effectiveness.”

SAMHSA’s 2011 Pharmacology Dialogue had an internal report not released about Primary care and Peer input. This is important since primary care docs prescribe 70% of psych meds in US but are less aware of dangers and research limitations. A sample of their 40 or so recommendation is, “Deal with issues for psychiatrists working in primary care. Have primary care docs (PCP) look at diets and obesity. Have primary care docs look at damage caused by meds. More access to primary care for mental health people. Look at smoking. Account for trauma histories. Monitor life situations and stressors. Be creative with interventions. Don’t get too focused on psych label. Encourage healthy lifestyles. Be good at coordinating all the care modalities.”

A previous version of SAMHSA’s 2006 “Building Bridges: Mental Health Care Consumers and Primary Care Representatives in Dialogue,” says, “Clarify database and confidentiality stuff. Put peer specialists in primary care. Have peers teach providers. Have Peers in national provider curriculum and professional guilds. Use stories about what works. Improve minority care discrepancies. Educate dentists. Teach peers how to deal with their medical trauma issues. Educate first responders. Track quality improvement. Make insurance companies accountable. More research on primary care with MH and peers. Do workplace initiatives with unions.”

Service user input must be included in the mental health services process, from beginning research to final implementation. Peers represent a perspective and voice that is often missed by the professional environment, which is at times harmful, peers have a broader ability to interact and educate the public on best practices, and peers represent a broader base of manpower to enact better health models and interventions. The inclusion of peers is crucial in order to reach the goal of improved mental health services. With an intentional process designed this might actually work. But it’s not going to happen by magic.