Building and Sustaining Authentic Partnerships: One Patient’s Experience with PCORI-Funded, Patient- Centered Trauma Research Peter W. Thomas, J.D. Principal, Powers Law Firm, Washington, DC Peter.Thomas@powerslaw.com; 202-872-6730 September 19, 2019
Peter W. Thomas, J.D. • Has nothing to disclose. 2
Patient Experience and Research Participation Matters • Personal story with rehabilitation and disability -Automobile accident in 1974 -Peer support experience -Transition into Trauma Survivors Network -American Trauma Society engagement -Patient experience helped guide career as an attorney and advocate, including in rehab and disability research -NIH rehabilitation research center was a pioneer with this concept -Disability community: “Nothing about us without us.” 3
Summary of Stakeholder Engagement • My PCORI involvement as a patient stakeholder: • Study 1: PCORI co-investigator experience, 2013- 2016 • Study 2: PCORI co-principal investigator experience, 2018 to present 4
Study 1: “A Comparative Effectiveness Trial of Optimal Patient-Centered Care for US Trauma Care Systems.” • Comparative Effectiveness Trial • 171 Patients randomized to: - Usual care control (n=86) - Social care transition intervention (n=85) -What are your principal concerns post-injury? Follow up. • My role as a patient co-investigator - Participate in research activities (e.g., review protocol, participate in PCORI annual meetings, helped author journal article) - Policy voice and the need for peer-integrated interventions 5
Study 2: "A Comparative Effectiveness Trial of an Information Technology Enhanced Peer-Integrated Collaborative Care Intervention for US Trauma Care Systems." • Comparative Effectiveness Trial • 424 Patients Randomized • Two Arms Arm 1: Trauma team notification of patients’ distress mental health consult Arm 2: Peer-integrated collaborative care intervention / IT enhanced o Peer meets injured patients by bedside & provides care transition o IT enhancements include care plans and alerts in EHR linked emergency department records • Outcomes we are measuring: - Emergency department utilization (subsequent to injury) - Patient concern severity - PTSD symptoms & functional recovery 6
Monthly Expert Stakeholder Calls (Peter Thomas, Stella Sieber, Pete Anziano, Kristina Anderson, Mary Lou Walen) • Patient Co-PI leads stakeholder group monthly calls (Began 1/1/2018) • Phase 1: Stakeholder input on consent form, baseline & 12 month follow-up interviews • Phase 2: Generation of peer intervention model - American Trauma Society peer program - Study team innovations such as peer recruitment after intervention completion Phase 3: Peer case presentations from Patient Co-PI & other patient stakeholders 7
Anticipated Next Steps and Goals for the Future • Ensuring a successful study where trauma patients demonstrate better outcomes as a result of our interventions • Policy Summit next year to translate research findings into trauma center practice to the maximum extent possible • Develop further research activities to build a better, patient-centric trauma system, such as greater demonstration of the value of peer support post-injury 8
TSOS Study Team • Douglas Zatzick • Ron Maier • Joan Russo • Eileen Bulger • Hannah Scheuer • Lauren Whiteside • Allison Engstrom • Mark Taylor • Rddhi Moodliar • Peyton Johnson • Kathleen Maloney • Sara Seo • Natalie Vaziri 9
Acknowledgement Thank You to Doug Zatzick, M.D., and his entire research team at the University of Washington/Harborview Medical Center, as well as Patient Stakeholder Advisory Board members Stella Sieber, Pete Anziano, Kristina Anderson, and Mary Lou Walen. Peter W. Thomas, J.D. Principal, Powers Law Firm Peter.Thomas@powerslaw.com September 19, 2019 10
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