Grand Rounds September 29, 2023: Navigating the Use of Patient-Reported Outcomes in Research and Practice: The PROTEUS Consortium (Claire Snyder, PhD; Norah Crossnohere, PhD; Anne Schuster, PhD)

Posted on by Elizabeth Mccamic

Speakers

Claire Snyder, PhD
Professor
Johns Hopkins Schools of Medicine and Public Health

Norah Crossnohere, PhD
Assistant Professor
Ohio State University College of Medicine

Anne Schuster, PhD
Research Scientist
Ohio State University College of Medicine

Keywords

Patient-Reported Outcomes, PROs, PROTEUS Consortium

Key Points

  • The Patient-Reported Outcomes Tools: Engaging Users & Stakeholders (PROTEUS) Consortium initially focused on PROs in clinical trials and then expanded to use in clinical practice. The PROTEUS Consortium’s objective is to ensure that patients, clinicians, and other decision-makers have high-quality PRO data from clinical trials and clinical practice to make the best decisions they can about treatment options.
  • The PROTEUS Consortium partners with key stakeholder groups to disseminate and implement tools that have been developed to optimize the use of PROs in clinical trials and practice.
  • There are more than 50 organizations with participating in PROTEUS, including clinicians and patient advocates, research and methods organizations, clinical trials groups, funding and government agencies, and universities and health systems.
  • Over the last decade, collection of guidance documents and resources have been developed to develop each of the steps in the clinical trial directory. The PROTEUS website has web tutorials, checklists, and a handbook on topics such as displaying data for patients and clinicians and researchers.
  • The PROTEUS-Practice Guide offers support for designing, implementing, and managing PRO systems in clinical care. It collates and synthesizes foundational resources to create a unified, comprehensive resource. For each consideration, the Guide provides a range of options rather than one “right” way. In almost all cases, the options are not mutually exclusive, and it is advisable to adopt multiple approaches. The Guide is applicable to a broad range of health systems.
  • The PROTEUS-Practice Learning Health Network includes 10 funded projects who come together with members across the PROTEUS Consortium for monthly meetings hosted by PROTEUS that provide a forum to share experiences and lessons learned.
  • Building off the request for proposals process for the Learning Health Network, PROTEUS recognized that institutions caring for vulnerable and underserved populations may face unique challenges when aiming to implement PROs in routine care.
  • PROTEUS and Pfizer partnered to form an Advisory Group that aimed to improve understanding of the facilitators and barriers of implementing routine PRO assessments in vulnerable and underserved populations and build capacity for PRO implementation to improve care for cancer patients who are vulnerable or underserved.
  • The Advisory Group identified 47 different potential solutions to address the top barriers. PROTEUS leaders reviewed and categorized the solutions into 4 categories: education and engagement, information technology or technological resources, incentives, mandates, and marketing, and research.

 

Learn more

Visit the PROTEUS Consortium

Discussion Themes

-Can you explain why the error bars and P values are not on some of the graphs in the presentation? This question gets at the importance of tailoring presentations for the intended audience. In our research, we learned that patients actively do not want to see error bars and P values on graphs. They didn’t know what they meant and found them confusing, and it strongly interfered with their ability to engage with the information. For clinicians and researchers, there was value in showing them.

-Can you elaborate on the incentives and marketing recommendation from the Underserved Advisory Group? Some of the discussion included insurance coverage where PRO monitoring is included with a prescribed treatment plan. There was discussion about paying patients and patient advocates for the time they spend advocating for PROs. In terms of marketing, including patient preferences in marketing throughout.

–How is PROTEUS following up on the recommendations regarding underserved populations? With current funding, PROTEUS can address recommendations specifically regarding education materials. We are pursuing funding. We are an implementation and dissemination project so not all traditional funding sources are available to us

Tags

#pctGR, @Collaboratory1