Newswise — New Orleans, LA, USA—May 21, 2019—ISPOR, the professional society for health economics and outcomes research (HEOR), examined how real-world evidence can be improved with patient-provided information this afternoon at its ISPOR 2019 annual conference with the session [W13], “Leveraging Patient-Provided Information to Improve Real-World Evidence: Getting to Good Practices on How.” 

Despite agreement that patient experiences should inform real-world study designs, best practices are lacking on exactly how patient-provided information (PPI) translates into improved real-world evidence (RWE) studies. Discussion leaders for the session included:

  • Cristina Masseria, MSc PhD; Pfizer; New York, NY, USA
  • Elisabeth Oehrlein, PhD, MS; National Health Council; Washington, DC, USA
  • Chris L. Pashos, PhD; AbbVie US LLC; North Chicago, IL, USA
  • Richard J. Willke, PhD; ISPOR; Lawrenceville, NJ, USA 

ISPOR partnered with the International Society for Pharmacoepidemiology (ISPE) to form a Joint Special Task Force on Real-World Evidence in Healthcare Decision Making. ISPOR and ISPE held a Summit in October 2017 on this issue and the Special Task Force produced and published 2 papers and an editorial in this area. 

As part of their objective to improve the rigor of RWE, the Joint ISPOR-ISPE Special Task Force recommended that stakeholder engagement be included for good procedural practices when designing, conducting, and disseminating RWE. Good practices exist on how to collect patient input, but do not exist on translating the input into specific study-design and/or methods considerations. To accomplish patient centricity in RWE, an urgent need exists to explore how to best translate PPI into specific study considerations. 

Dr Willke reviewed the intent of the ISPOR/ISPE Special Task Force’s recommendations for researchers and perspectives on moving the field forward. Dr Oehrlein provided an overview of the topic with a case study on incorporating atrial fibrillation patient experiences into an RWE study design. Drs Masseria and Pashos built on their experiences to offer suggestions for incorporating PPI into RWE study designs using different types of datasets for different markets. The discussion leaders then facilitated a group discussion based on specific examples of how RWE study designs can benefit from patient-provided input. Dr Willke stated, “Employing patient insights into the disease and treatment situation is invaluable for designing a meaningful, impactful real-world study.” 

ISPOR is recognized globally as the leading professional society for health economics and outcomes research and its role in improving healthcare decisions. ISPOR 2019 is the leading global HEOR conference and draws nearly 4000 healthcare thought leaders and stakeholders, including researchers and academicians, assessors and regulators, payers and policy makers, the life sciences industry, healthcare providers, and patient engagement organizations. 

Additional information on the conference can be found at: Conference Information | Program | Registration | Short Course Program | Sponsors | Exhibitors | Press



ISPOR, the professional society for health economics and outcomes research (HEOR), is an international, multistakeholder, nonprofit dedicated to advancing HEOR excellence to improve decision making for health globally. The Society is the leading source for scientific conferences, peer-reviewed and MEDLINE®-indexed publications, good practices guidance, education, collaboration, and tools/resources in the field.

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Meeting Link: ISPOR 2019, May-2019