Patricia E. Deegan is an American disability-rights advocate, psychologist and researcher. She has been described as a "national spokesperson for the mental health consumer/survivor movement in the United States." Deegan is known as an advocate of the mental health recovery movement (a cofounder of the National Empowerment Center) and is an international speaker and trainer in the field of mental health.
Deegan co-founded M-POWER (Massachusetts People/Patients Organized for Wellness, Empowerment and Rights) and created CommonGround, "a web application to support shared decision making in the psychopharmacology consultation."
Personal life Deegan was diagnosed with schizophrenia as a teenager. She credits her grandmother with putting her on the road to recovery. Together with her partner of 30 years, Deborah Anderson, they have raised a daughter, Chianne.
Academia
Deegan received her B.S. from Fitchburg State College in 1977 and her PhD in clinical psychology from Duquesne University in 1984. Her dissertation titled "The use of diazepam in an effort to transform being anxious: An empirical phenomenological investigation" was conducted under the supervision of William F. Fischer. Deegan is a phenomenological psychologist, whose writings include rich autobiographical accounts of her experience living with schizophrenia, and emphasize that recovery from serious mental illness is possible.
She also served as an adjunct professor at the Dartmouth College Medical School, Department of Community and Family Medicine and the Boston University, Sargent College of Health and Rehabilitation Sciences.
Honors and recognition
1983 Dissertation Fellowship from the American Association of University Women 1986 Excellence Award from the Massachusetts Alliance for the Mentally Ill 2001 The David E. Ray Award, Northeast Independent Living Program 2009 The Brendan Nugent Leadership Award, NYAPRS 2010 Agency for Healthcare Research and Quality recognition as a practice innovation 2010 Patient Empowerment by the Ashoka Changemakers Foundation finalist in the international competition 2011 Clifford Beers Award, Mental Health America 2013 New York Association of Psychiatric Rehabilitation Services (NYAPRS) Lifetime Achievement Award 2013 Scattergood Foundation Innovation Award 2013 APA Gold Award in partnership with Community Care Behavioral Health 2015 Wayne Fenton Award for Exceptional Clinical Care 2017 International Association of Peer Supporters Steve Harrington Award 2018 New York Association of Psychiatric Rehabilitation Services Lifetime Achievement Award
Research and professional interests Electronic decision support and shared decision making. Specialist in qualitative research focusing on recovery from mental illness, the effectiveness of self-help and mutual-support, mental health systems change and research on ex-patient perspectives on the history of mental health services.
2013 – present Consultant OnTrackNY: Coordinated Specialty Care Team for first episode psychosis: team development, materials development and consultation. 2014 – 2018 Co-Principal Investigator PCORI: Amplifying the Patient's Voice: Person-Centered vs. Measurement-Based Approaches in Mental Health 2011 – 2015 Consultant Bringing Recovery to Scale (BRSSTACS) SAMHSA Grant. 2009 – 2013 Consultant Recovery After Initial Schizophrenia Episode (RAISE). NIMH funded national study of best practice for the treatment of first episode psychosis. Executive Committee and Intervention Committee. 2008 – 2011 Consultant SAMHSA Shared Decision Making Project. Assist with development of decision aid for choice of antipsychotic medications. 2005-2007 Principal Investigator Using medications as part of the recovery process: A peer-2-peer, videotaped workshop with supporting materials, New York State Office of Mental Health, Bureau of Recipient Affairs. 2002-2009 Principal Investigator A recovery based approach to using psychiatric medications. University of Kansas, School of Social Welfare. 2002- 2005 Principal Investigato Self-directed recovery from psychiatric disorders. New York State Office of Mental Health, Bureau of Recipient Affairs. 2002- 2004 Principal Investigator Direct national effort to organize mental health consumers to combat stigma through state hospital cemetery restoration. 1999 - 2001 Principal Investigator, for a supplemental grant from the Center for Mental Health Services titled "It's About Time: Recovering, Discovering and Celebrating Consumer/Survivor History": To organize ex-patients in various states to restore state hospital cemeteries and to research the perspective of ex-patients including special profiles on African American, Hispanic and Native American perspectives. 1998 - 2000 Principal Investigator Office of Consumer and Ex-patient Relations through a grant from the Massachusetts Department of Mental Health: To organize ex-patients in Massachusetts to restore cemeteries at state hospitals and to research the history of mental health services in Massachusetts from the perspective of ex-patients. 1996-1999 Co-Principal Investigator with D. Fisher. Recovery Narratives and the recovery process funded by SAMSHA Center for Mental Health Services. Interviews and analysis of recovery narratives. The study identified principles and themes of the recovery process from serious mental disorders as part of a $1 million core grant to National Empowerment Center. 1994 Principal Investigator Employee Performance Standard that Support Recovery and Empowerment for People with Major Psychiatric Disorders. Advocates, Inc. of Framingham MA. Developed a methodology to collect data and work with mental health supervisors to develop performance based standards. Recruited 5 national field sites to pilot the performance standards. On-going, web-based follow-up and refinement of method and outcomes. 1993-1996 Principal Investigator. Interviewed 40 subjects on strategies for coping with auditory hallucinations, conducted analyses and published the findings. Funded by the Center for Mental Health Services/SAMHSA as part of another $1 million core grant to the National Empowerment Center Lawrence, MA. 1982 Principal Investigator Empirical phenomenological study of failing to learn. Lab research at Duquesne University.
Publications Deegan, P. E., Stiles, A., Rufo, M., & Zisman-Ilani, Y. (2024). Awakening on antipsychotic medication: A call to action.. Psychiatric Rehabilitation Journal. Advance online publication. https://dx.doi.org/10.1037/prj0000608 Zisman-Ilani Y, Parker M, Thomas EC, Suarez J, Hurford I, Bowen A, Calkins M, Deegan PE, Nossel I, Dixon LB (2024). Usability and Feasibility of Antipsychotic Medication Decision Aid (APM-DA) in a First Episode Psychosis Community Program, Psychiatric Services, 75:8, 807–811. Fortuna, K. L., Lebby, S., Geiger, P., Johnson, D., MacDonald, S., Chefetz, I., Ferron, J. C., St George, L., Rossom, R., Kalisa, J., Mestrovic, T., Nicholson, J., Pringle, W., Rotondi, A. J., Sippel, L. M., Sica, A., Solesio, M. E., Wright, M., Zisman-Ilani, Y., Gambee, D., ... Walker, R. (2023). Lived Experience-Led Research Agenda to Address Early Death in People With a Diagnosis of a Serious Mental Illness: A Consensus Statement. JAMA network open, 6(5), e2315479. https://doi.org/10.1001/jamanetworkopen.2023.15479 Deegan, PE (2022). I am a person, not an illness, Schizophrenia Research, 244, 74. MacDonald-Wilson, K. L., Williams, K., Nikolajski, C. E., McHugo, G., Kang., C., Deegan, P., Carpenter-Song, E., & Kogan, J. N. (2021). Promoting collaborative decision making in community mental health centers: Insights from a patient-centered comparative effectiveness trial. Psychiatric Rehabilitation Journal, 44(1), 11–21. https://doi.org/10.1037/prj0000455 Deegan, PE (2020). Guarigione, riabilitazione e la Cospirazione della Speranza. In La Practica Quotidiana Della Speranza, Giuseppe Tibaldi (Ed.), Mimesis. Deegan, PE (2020). Prescribing hope for recovery. Psychiatric Times, 37:6, 12–13. Deegan, PE (2020). The journey to use medication optimally to support recovery. Psychiatric Services, 71:4, 401–402. Fortuna, KL, Naslund, JA, LaCroix, JM, Bianco, CL, Brooks, JM, Zisman-Ilani, Y, PhD, Muralidharan, A, Deegan, PE. (2020). Systematic Review of Peer-Supported Digital Mental Health Interventions for People with a Lived Experience of a Serious Mental Illness. JMIR: Mental Health, 7 (3): doi: 10:2196/16460. Deegan, PE (2019). The Owl and Me: Recovery Across My Lifespan (Die Eule und ich oder Recovery al sein lebenslanger prozess). In G Zuaboni, C Burr, A Winter, M Schulz (Eds), Recovery und psychische Gesundheit: Grundlagen und Praxisprojekte, Psychiatrie Verlag GmbH, Koln, 14–25. Fortuna, KL, Walker, R, Fisher, D, Mois, G, Allan, S, & Deegan, PE (2019). Enhancing Digital Mental Health Standards and Principles with Recovery-Focused Guidelines for Mobile, Online, and Remote Monitoring Technologies. Psychiatric Services, 70:12, 1080–1081. Fortuna, KL, Ferron, J, Pratt, SI, Muralidharan, A, Williams, AM, Aschbrenner, KA, Deegan, PE, & Salzer, M. (2019). Unmet needs of people with serious mental illness: Perspectives from certified peer specialists. Psychiatric Quarterly, 90(2). Yaara Zisman-Ilani, David Shern, Patricia Deegan, JulieKreyenbuhl, Lisa Dixon, Robert Drake, William Torrey, Manish Mishra, Ksenia Gorbenko, Glyn Elwyn (2018). Continue, adjust, or stop antipsychotic medication: developing and user testing an encounter decision aid for people with first-episode and long-term psychosis. BMC Psychiatry, 18:142, https://doi.org/10.1186/s12888-018-1707-x. Deegan, PE (2018). L’expérience vécue du rétablissement. In Nicolas Franck (Ed), Traité de rehabilitation psychosociale. Elsevier Masson, France, 9–15. Deegan PE, Carpenter-Song E, Drake RE, Naslund JA, Luciano A, Hutchison SL (2017). Enhancing Clients’ Communication Regarding Goals for Using Psychiatric Medications. Psychiatric Services, 68:8, 771–775. Kim L. MacDonald-Wilson, Shari L. Hutchison, Irina Karpov, Paul Wittman, Patricia E. Deegan (2016). A successful implementation strategy to support adoption of decision making in mental health services. Community Mental Health Journal, June 4. Drake RE, Noel VA, Deegan PE (2015). Measuring recovery as an outcome. Die Psychiatrie, 12 3: 174–179. Hutchison, S.L., Karpov, I., Deegan, P.E., MacDonald-Wilson, K.L., & Schuster, J.M. Adoption of strategies to improve decision support in community mental health centers. (2015). Implementation Science, 10(Suppl 1), A27, Deegan PE (2014). Commentary: Shared decision making must be adopted, not adapted. Psychiatric Services, 65(12): 1487–1487. MacDonald-Willson KL, Deegan PE, Hutchison HL, Parrotta N, Schuster JM (2013). Integrating Self-Management Strategies into Mental Health Service Delivery: Empowering People in Recovery. Psychiatric Rehabilitation Journal, 36,4 258–263. Stein BD, Kogan JN, Mihalyo MJ, Schuster J, Deegan PE, Sobero MJ, Drake RE. (2012). Use of computerized medication shared decision-making tool in community mental health settings: Impact on psychotropic medication adherence. Community Mental Health Journal, July,1-8. Deegan, P.E. (2010). A description of a web application to support shared decision making. Psychiatric Rehabilitation Journal,34(1):23-8. Drake, R.E., Deegan P.E., & Rapp, C. (2010). The promise of shared decision making in mental health. Psychiatric Rehabilitation Journal, 34(1):7-13. Drake, R.E., Deegan, P.E., Woltmann, E., Haslett, W., Drake, T., & Rapp, C. (2010). Comprehensive electronic decision support systems. Psychiatric Services, 61:714-717. Drake, R.E. & Deegan, P.E. (2009). Shared decision making: Whose decision? (In Reply) Psychiatric Services, 60,1555-1556. Drake, R.E. & Deegan, P.E. (2009). Shared decision making is an ethical imperative: (Taking Issue). Psychiatric Services, 60, 1007.