Can “Patient-Centered Care” Enhance the Quality of Behavioral Health Care? Judith A. Cook, Ph.D. Professor and Director Center on Mental Health Services Research & Policy Department of Psychiatry University of Illinois at Chicago Presented at the The Twenty-First Annual Rosalynn Carter Symposium on Mental Health Policy Atlanta, GA, November2, 2005

What is Patient-Centered Medical Care as Defined in the 2001 IOM Quality Chasm Report?  Respecting pt’s values, beliefs, preferences  Customizing care to the individual pt  Providing patient education  Coordinating & integrating care  Expert management of symptoms  Provision of emotional support to pts  Accommodation of pt’s supporters

What Does Patient-Centered Behavioral Health Care Look Like?  Self-help/mutual support groups (Recovery, GROW, Depression & Bipolar Support Alliance)  Peer-to-peer services (Georgia Certified Peer Specialists)  Peer-to-peer education (Bridges, Vision for Tomorrow)  Mental illness self-management (WRAP, Taking Charge)  Self-directed care/$ follows the person models  Person-centered planning  Peer addiction recovery services (AA, Double Trouble)  Advance directives for mental health care (ADMaker)  Employment of people in recovery in traditional programs  Seclusion & restraint reduction/elimination

How to Accomplish Pt-Centered Care? From Quality Chasm Report: View the patient as the source of control… “… [by providing patients with] the necessary information and the opportunity to exercise the degree of control they choose over health care decisions…” (2001, p. 61, emphasis added)

Have We Accomplished this Aspect of Patient-Centered Care in U.S Mental Health System? From Presidents’ New Freedom Commission on Mental Health Achieving the Promise Report… (2003, p )  “Currently, adults with serious mental illnesses…have limited influence over the care they receive…”  “The extreme fragmentation of the system of care means that many consumers of behavioral health services are…unable to fully participate in their own plans for recovery.”  “…consumers and their families do not control their own care.” (emphasis added)

What Does the 2005 IOM Report Recommend? “Recommendation 4-1. Build and disseminate the evidence base better…strengthen, coordinate, and consolidate the synthesis and dissemination of evidence on effective M/SU treatments and services…” IOM Report on Improving the Quality of Health Care for Mental and Substance Use Conditions, 2005, p.12

What Is the Evidence Base for Patient-Centered Care In Behavioral Health Care?

U.S. Agency for Healthcare Policy & Research 1992 Evidence Rating Guidelines Level Iaevidence from meta-analysis of multiple randomized controlled trials Level Ibevidence from at least 1 randomized controlled trial Level IIaat least one well-designed controlled study without randomization Level IIbevidence obtained from at least one other type of non-controlled, well-designed quasi-experimental study Level III evidence obtained from well-designed non-experimental descriptive studies, such as comparative studies, correlation studies, and case studies Level IVexpert committee reports or opinions &/or clinical experiences of respected authorities

Consumer-Operated Mental Health Services: Evidence Base  4 Randomized Controlled Trials (Paulson et al., 1999; Solomon & Draine, 1999; Kaufmann, 1995; Edmunson et al., 1982)  Multi-site (N=8) COSP Study (Campbell et al., 2005) All found COSP services equivalent or superior to control services COSP Evidence Base - Level Ib* * Level Ib - evidence from at least 1 randomized controlled trial, U.S. Agency for Healthcare Research & Quality 1992 Evidence Rating Guidelines

Mental Illness Self-Management: Evidence Base  Illness Self-Management: Wellness Recovery Action Planning (WRAP) (Vermont Recovery Education Project, nd; Buffington, 2003) Significant changes in knowledge of symptoms, symptom management, use of natural supports, hopefulness, development of crisis plan Self-Management Evidence Base - Level IIb* * Level IIb - evidence obtained from at least one other type of non-controlled, well-designed quasi-experimental study, U.S. Agency for Healthcare Research & Quality 1992 Evidence Rating Guidelines

Seclusion & Restraint Reduction: Evidence Base  Seclusion & Restraint Reduction (Jonikas et al., 2004; McCue et al., 2004) Significant pre-post-reductions in rates of seclusion &/or restraint following staff/patient training & ACM planning Seclusion & Restraint Reduction Evidence Base - Level IIb* * Level IIb - evidence obtained from at least one other type of non- controlled, well-designed quasi-experimental study, U.S. Agency for Healthcare Research & Quality 1992 Evidence Rating Guidelines

Advance Directives for Psychiatric Care: Evidence Base  Psychiatric Advance Directives: (AD-Maker) – (Backlar, 2000; Southerby et al., 1999; Srebnik et al., 2004, 2005) Significant increases in perceived control over mental health problems, involvement in care, and ability to express treatment preferences Advance Directives Evidence Base - Level IIb* * Level IIb - evidence obtained from at least one other type of non-controlled, well-designed quasi-experimental study, U.S. Agency for Healthcare Research & Quality 1992 Evidence Rating Guidelines

Self-Directed Care: Evidence Base  Self-Directed Care for Mental Health Recovery: Significantly greater satisfaction than comparison group with ability to obtain needed services & with progress toward goal attainment; significant increases in level of functioning & days in the community compared to pre-program levels (Teague & Boaz, 2003; Cook & Russell, 2005) Advance Directives Evidence Base - Level III* * L evel III-evidence obtained from well-designed non-experimental descriptive studies, such as comparative studies, correlation studies, and case studies, U.S. Agency for Healthcare Research & Quality 1992 Evidence Rating Guidelines

Other reasons to expect quality enhancement from consumer- centered care

The Use of Consumer-Directed Mental Health Care Appears to be Growing ECA study (early 1980s) - 4.1% of individuals with a mental disorder used voluntary support in past year MIDUS study (1996) - 18% of ppl with severe mental illness used formal mental health self-help/mutual aid group in past year In a national survey of states, 40 funded consumer- operated peer/mutual support programs, 38 funded consumer advocacy programs, 32 states reported offering self-help programs in state hospitals, & 32 funded drop-in centers (Shaw, 2004).

While Consumer-Centered Care is Growing the Amount of State Funding is Fairly Minimal In , most states spent less than one percent of their total annual mental health budgets on COSP. Of 41 states reporting, 1/3 provided less than $500,000/year and 1/4 spent $200,000 or less/ year. (NASMHPD, 2004).

Is Consumer-Centered Care a Good Investment for Federal Policy? President’s Commission Report (2003) noted the need to increase opportunities for consumer-run services and consumer- providers, enhance access to peer support, and increase treatment choice and the full partnership of consumer and providers.

A “Modest Proposal” for Enhancing Behavioral Health Quality Increase level of funding for consumer-centered and consumer-operated services Encourage development of new models of consumer- centered care Encourage & fund more and more rigorous research on the effectiveness of consumer-directed care Train professionals in these models & require that they collaborate effectively with consumers & consumer- providers Increase consumers’ involvement in all levels of behavioral health care “transformation”

Is This the Dawning of a New Day for Quality Behavioral Healthcare?