Online Program

Oral

Patient and stakeholder involvement in research marks a paradigmatic shift away from assumptions that scientists and funders are the sole sources of research questions and priorities. The research community increasingly seeks to involve patients and other stakeholders in health research due to a combination of political mandate, accountability and a desire for better quality research, including increased validity, relevance, acceptance and sustainability. Recent emphasis on patient-centered outcomes research provides opportunities to develop research in which questions, interventions, and outcomes are meaningful to patients and other stakeholders. The Patient Centered Outcome Research Institute (PCORI) has been in the forefront of efforts in the U.S. to foster research that is patient centered and involves stakeholders throughout the process. A preliminary phase of patient-centered research addresses the question ‘What should we study?’ In this phase, stakeholders can participate in identifying topics and questions that are important to them and decide on the importance and priority of these questions. Because evidence-based methods for involving stakeholders in identifying and prioritizing research questions are lacking, PCORI has funded a range of methodological studies to advance this area of research. This presentation will be introduced and moderated by a PCORI staff member from the Comparative Effectiveness Research (CER) Methods and Infrastructure team. Presenters will describe three studies funded by PCORI that recommend, compare or create modes of stakeholder engagement in the process of identifying and prioritizing health research questions. The projects highlighted focus on: 1. Comparing the strengths and limitations of patient engagement via diverse methods (mailed questionnaires, focus groups, and online crowd-voting) among older individuals participating in a back pain patient registry; 2. Identifying current methods used by investigators, focusing on longitudinal engagement between researchers and existing patient- and community-based organizations and use of value of information calculations; 3. Demonstrating a new method that combines collaborative, participatory and consultative engagement in a process that takes stakeholders from conceptualization of causal models to development and prioritization of research questions.

Session Objectives: 1. Describe rationale for patient and stakeholder engagement in the research process 2. Describe and compare current methods and opportunities for patient and stakeholder engagement and how these relate to patient-centered research objectives 3. Discuss current and emerging methods of stakeholder engagement and recommendations for ways to improve engagement