Patient and caregiver engagement in the Patient-Centered Outcomes Research Institute (PCORI) Health Care Horizon Scanning System (HCHSS) process

Abstract

Objective The Patient-Centered Outcomes Research Institute (PCORI) horizon scanning system is an early warning system for healthcare interventions in development that could disrupt standard care. We report preliminary findings from the patient engagement process. Methods The system involves broadly scanning many resources to identify and monitor interventions up to 3 years before anticipated entry into U.S. health care. Topic profiles are written on included interventions with late-phase trial data and circulated with a structured review form for stakeholder comment to determine disruption potential. Stakeholders include patients and caregivers recruited from credible community sources. They view an orientation video, comment on topic profiles, and take a survey about their experience. Results As of March 2020, 312 monitored topics (some of which were archived) were derived from 3,500 information leads; 121 met the criteria for topic profile development and stakeholder comment. We invited fifty-four patients and caregivers to participate; thirty-nine reviewed at least one report. Their perspectives informed analyst nominations for fourteen topics in two 2019 High Potential Disruption Reports. Thirty-four patient stakeholders completed the user-experience survey. Most agreed (68 percent) or somewhat agreed (26 percent) that they were confident they could provide useful comments. Ninety-four percent would recommend others to participate. Conclusions The system has successfully engaged patients and caregivers, who contributed unique and important perspectives that informed the selection of topics deemed to have high potential to disrupt clinical care. Most participants would recommend others to participate in this process. More research is needed to inform optimal patient and caregiver stakeholder recruitment and engagement methods and reduce barriers to participation.

Obstacles to and opportunities for care collaboration through the utilization of an effective preventive care process for frail older adults: A study protocol for a mixed methods study design.

“…In medical and nursing sciences the concept of collaboration has been highlighted as valuable and might contribute to building trust in the relationships between patients and relatives and the healthcare professions (12,13). Positive outcomes of collaboration are quality of care, patient safety, and making it easier for the patient to gain an overview of his/her care process (14,15). Previous studies indicate that care collaboration in healthcare seems to be considered highly valuable in principle, and that older adults and caregiver's want to be actively engaged in a dialogue regarding care (16), but that collaboration is di cult to achieve in all situations in everyday care (17).…”

Emerging healthcare interventions: Patient-Centered Outcomes Research Institute’s programmatic initiative

“…To inform future research investments in CER, from December 2018 to early 2019, PCORI launched two initiatives to monitor new and emerging interventions which may impact health care in the near term in the United States. The first initiative, PCORI’s Health Care Horizon Scanning System (HCHSS), surveils new interventions and closely monitors evidence of those with high potential for disruption in healthcare (i.e., to the current standard of care) in terms of patient outcomes, health disparities, care delivery, infrastructure, access, and/or cost (2;3). The second initiative, PCORI’s Emerging Technologies and Therapeutics Reports, is an extended application of horizon scanning, which provides broad summaries of evidence and identifies contextual issues arising from the use of new drugs, devices, and other healthcare technologies in the United States (4).…”