Patient-Centered Outcomes Research Institute (PCORI) Lurie Children’s Hospital Surgical Outcomes Research Group

What is PCORI? Independent nonprofit, nongovernmental organization – not NIH! Mission – PCORI helps people make informed healthcare decisions, and improves healthcare delivery and outcomes, by producing and promoting high-integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader healthcare community. Translation – As investigators, we need to engage patients and clinicians to address questions that are important to them. At IPSG – we have started the process of engaging our patients Fund projects on Comparative Effectiveness Research: assess the benefits and harms of interventions related to preventive, diagnostic, therapeutic, or palliative care or the healthcare delivery system

What is Patient Engagement? Strong emphasis on engaging patients and the broader healthcare community Patient-centeredness/feedback crucial to proposal IPSG parent group – engage a parent(s) to be an investigator at the START of the proposal process Note – PCORI has tools to teach parents how to do this type of research

What is comparative effectiveness research? Definition: direct comparison of existing health care interventions to determine which work best for which patients and which pose the greatest benefits and harms. Outcomes based, not limited to basic science or RCTs Example for IPSG: nonsurgical vs surgical management of Perthes for 6-8 age group with outcomes decided by parents, patients and clinicians.

Types of Submissions: “Pragmatic Clinical Studies” on CER (between $350,000 to several million in direct costs over many years) Broad Call for proposals Funded topic examples: Comparing Medicines that Prevent Blood Clots for Emergency Room Patients with Serious Fractures High Intense Periodic vs. Every Week Therapy in Children with Cerebral Palsy Multi-Institutional Trial of Non-Operative Management of Uncomplicated Pediatric Appendicitis Lurie Dept of Surgery has received funding for a Child Life based study looking at pain and anxiety management strategies around surgery.

Types of Submissions: Eugene Washington Awards ($250,000 for 2 years) The Eugene Washington PCORI Engagement Award program: Intended to bring more patients, caregivers, clinicians, healthcare stakeholders into the research process Supports projects that will build a community better able to participate in: Patient-centered research (PCOR) Comparative clinical effectiveness research (CER) Supports projects to disseminate study results Use this award to help strengthen or build a Parent/Patient/Family Advisory Board for IPSG

Other PCORI Award Types Dissemination and Implementation of PCORI Funded Patient- Centered Outcomes Research Results and Products in Real World Settings Pragmatic Clinical Studies to Evaluate Patient-Centered Outcomes Engagement Award (EAIN): Research Meeting and Conference Support Engagement Award: Knowledge, Training and Development, and Dissemination Awards This is not an exclusive list – check out www.pcori.org for more information

Important things to know about PCORI: Application process is tiered: Submit LOI, if accepted (accept rate of 50%), then submit full proposal Anyone can be an Investigator: Patient/Family partners, clinical research staff, allied health clinicians Patient stakeholders get $$ for their contributions PCORI proposals require a shift in thinking about how to do research I.E – Research is not strictly investigator driven but a partnership with patients, clinicians, researchers PCORI offers training for both clinicians, patients, and caregivers through webinars and scholarships for conferences In first 6 years, PCORI has spent $1.90 Billion to fund more than 600 projects PCORI (and NIH) need clinicians to join review panels (and study sections)