Building and Sustaining Authentic Partnerships: One Patients - - PowerPoint PPT Presentation

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

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Peter W. Thomas, J.D.

• Has nothing to disclose.

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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.”

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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

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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

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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

• Peer meets injured patients by bedside & provides care transition
• 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

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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

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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

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TSOS Study Team

• Douglas Zatzick
• Joan Russo
• Hannah Scheuer
• Allison Engstrom
• Rddhi Moodliar
• Peyton Johnson
• Kathleen Maloney
• Sara Seo
• Natalie Vaziri
• Ron Maier
• Eileen Bulger
• Lauren Whiteside
• Mark Taylor

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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