Blended Engagement Conferences
- 2014: Since the launch and success of patient-engagement conferences in the United States and Europe in 2014, stakeholders in search of information to help improve collaboration efforts has surged. However, most include sessions that merge various disease groups, who utilize different Concepts of Patient Involvement (CoPI) Concepts of Patient Involvement (CoPI) define methods of engagement that involve patients in the research process. Some CoPIs have published guidance associated with them, which is recommended to follow by others planning to use the same term. and whose communities have disease-specific engagement barriers that are not considered. For those new to the patient engagement in the research space, this can cause confusion and the adaptation of terms and processes that were established in one community may not translate to the next. This can lead to issues with value measurements, particularly if the same term is used with different collaborative methods.
- This problem was demonstrated in 2014, during a US Patients as Partners meeting, when audience members requested clarification of the term Patient Research Partner (PRP)Patient Research Partner (PRP) is defined as a person with a relevant disease who participates or has participated as an active research team member on an equal basis with professional researchers, thus adding the value of experiential knowledge to a research project., which was used by several presenters but the method of engagement varied. This moment contributed to the realization that a rheumatology-specific Council may be necessary (See ACTion Council, 2018).
“Patients Included” Events
- 2015: PCORI’s first Annual Meeting in 2015 brought together more than 1,100 members of the Patient-Centered Outcomes Research Institute (PCORI)PCORI is an independent nonprofit, nongovernmental organization and was authorized by Congress in 2010. PCORI is the largest funder of comparative effectiveness research (CER) in the United States with the mandate to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policymakers make better-informed health decisions.
www.pcori.org community, including patients, researchers, and other health care stakeholders. PCORI has had meetings every year since 2015 and all have been designated as a “Patients Included” event, meaning, patients and caregivers are involved as full participants in the event’s planning and delivery, and necessary accommodations are provided for patients and caregivers to facilitate their participation.
CoPI: Patient Research Partner (PRP), Patient-Centered Outcomes Research (PCOR), conference participant