1. 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

2. 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

3. 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

4. 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)

5. 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. 28-29)  “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)

6. 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

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

8. 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

9. 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

10. 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

11. 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

12. 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

13. 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

14. Other reasons to expect quality enhancement from consumer- centered care

15. 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).

16. While Consumer-Centered Care is Growing the Amount of State Funding is Fairly Minimal In 2002-2003, 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).

17. 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.

18. 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”

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