Patient and caregiver engagement in the Patient-Centered Outcomes Research Institute (PCORI) Health Care Horizon Scanning System (HCHSS) process
| Autor: | Karen M Schoelles, Marcus Lynch, Andrea Druga, Randy Hulshizer, Kelley Tipton, Eileen Erinoff, Eloise DeHaan, Brian Wilkinson, Damian Carlson, Donna Beales, Diane C. Robertson, Christian Cuevas, Jennifer De Lurio, Misha Mehta, Maria Middleton |
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| Rok vydání: | 2020 |
| Předmět: |
medicine.medical_specialty
Process (engineering) Psychological intervention 03 medical and health sciences 0302 clinical medicine Nursing United States Agency for Healthcare Research and Quality Stakeholder Participation Health care medicine Humans 030212 general & internal medicine Patient participation Personnel Selection business.industry 030503 health policy & services Health Policy Patient-centered outcomes Stakeholder Community Participation United States Patient Outcome Assessment Caregivers Early warning system Outcomes research Patient Participation 0305 other medical science business Psychology |
| Zdroj: | International journal of technology assessment in health care. 37 |
| ISSN: | 1471-6348 0266-4623 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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