What Should PCORI Study? A Call for Topics from Patients and Stakeholders
As a part of its effort to develop and refine a patient-focused research agenda, the Patient-Centered Outcomes Research Institute (PCORI) hosted a workshop entitled, “What Should PCORI Study? A Call for Topics from Patients and Stakeholders,” on December 4, 2012, in Alexandria, Va. The event was designed to bring together the broad range of healthcare stakeholders to share and discuss important future topics of patient-centered outcomes research.
The workshop was an inclusive, interactive multi-stakeholder event. PCORI staff and attendees discussed the institute’s patient-centered approach to research, its plans for engaging stakeholders in the research process, and a method for prioritizing potential research topics. Participants engaged in interactive small-group sessions to solicit their ideas for research in a variety of topic areas, including assessment of screening, diagnosis and treatment options; clinical trials; improving health care systems; addressing disparities; communications and dissemination research; and rare diseases.
Through this workshop, PCORI hoped to learn:
- The top patient-focused issues that stakeholders believe should be studied;
- How stakeholders generate research questions;
- How patient-centered outcomes research will be useful to stakeholders;
- Examples of patient-focused care improvement;
- Promising practices for patient and stakeholder engagement; and,
- Promising practices for dissemination of clinical research, (e.g., health literacy, clinical decision aids).
Workshop attendance was limited to 100 individuals; 25% of invitations were reserved for patients, caregivers and the organizations that represent them. Participants were selected by PCORI staff following an open statement of interest application process conducted through the PCORI website between August 29, 2012, and October 10, 2012.
Participants were able to:
- Watch the workshop via a free webcast.
- Join the conversation via Twitter using the #PCORI hashtag.
- "Suggest a Question" that PCORI could consider as it develops targeted research funding announcements.
- Submit additional feedback via email.