Engaging patients in health care epidemiology research: A case example. 2019

Nicole Brys, and Julie A Keating, and Mary Jo Knobloch, and Nasia Safdar
Department of Medicine, Division of Infectious Disease, University of Wisconsin School of Medicine & Public Health, Madison, WI. Electronic address: nabrys@wisc.edu.

We describe stakeholder engagement from a Patient-Centered Outcomes Research Institute-funded project to identify patients' research priorities for health care-associated infections (HAI). We summarize insights from these activities to highlight feasibility and benefits of stakeholder engagement in health care epidemiology research.Patients and caregivers who had an HAI experience were involved in a patient and caregiver stakeholder group. We engaged clinicians, infection prevention experts, state public health professionals, and quality improvement experts in an institutional stakeholder (IS) group in an academic tertiary care medical center. Through individual and combined group activities, we identified stakeholders' HAI research priorities. Existing engagement resources from the Wisconsin Network for Research Support (WINRS) guided the process. Given the patients' and caregivers' experiences with HAIs, their perspectives broadened IS understanding of the impact of HAIs and the relevance of proposed research topics. After introductory activities described here, the patient and caregiver stakeholder group actively engaged with researchers and the IS group in discussing complex systems-level topics to reduce HAIs. We have sustained this engagement through continued collaboration. Our engagement experience provides one example of how patients can be engaged in health care epidemiology research. Our experiences and lessons learned may be helpful to others interested in stakeholder engagement.

UI MeSH Term Description Entries
D010358 Patient Participation Patient involvement in the decision-making process in matters pertaining to health. Patient Activation,Patient Empowerment,Patient Engagement,Patient Involvement,Patient Participation Rates,Activation, Patient,Empowerment, Patient,Engagement, Patient,Involvement, Patient,Participation Rate, Patient,Participation Rates, Patient,Participation, Patient,Patient Participation Rate
D003428 Cross Infection Any infection which a patient contracts in a health-care institution. Hospital Infections,Nosocomial Infections,Health Care Associated Infection,Health Care Associated Infections,Healthcare Associated Infections,Infection, Cross,Infections, Hospital,Infections, Nosocomial,Cross Infections,Healthcare Associated Infection,Hospital Infection,Infection, Healthcare Associated,Infection, Hospital,Infection, Nosocomial,Infections, Cross,Infections, Healthcare Associated,Nosocomial Infection
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D014922 Wisconsin State bounded on the north by Lake Superior and Michigan, on the east by Lake Michigan, on the south by Illinois and Iowa, and on the west by Minnesota and Iowa.
D062606 Tertiary Care Centers A medical facility which provides a high degree of subspecialty expertise for patients from centers where they received SECONDARY CARE. Tertiary Hospital,Tertiary Referral Center,Tertiary Referral Hospital,Care Center, Tertiary,Care Centers, Tertiary,Center, Tertiary Care,Center, Tertiary Referral,Centers, Tertiary Care,Centers, Tertiary Referral,Hospital, Tertiary,Hospital, Tertiary Referral,Hospitals, Tertiary,Hospitals, Tertiary Referral,Referral Center, Tertiary,Referral Centers, Tertiary,Referral Hospital, Tertiary,Referral Hospitals, Tertiary,Tertiary Care Center,Tertiary Hospitals,Tertiary Referral Centers,Tertiary Referral Hospitals
D018562 Disease Transmission, Infectious The transmission of infectious disease or pathogens. When transmission is within the same species, the mode can be horizontal or vertical (INFECTIOUS DISEASE TRANSMISSION, VERTICAL). Close-Contact Infectious Disease Transmission,Close-Contact Transmission,Community Spread,Community Transmission,Disease Superspreader Event,Disease Superspreading,Droplet Transmission of Infectious Disease,Droplet Transmission, Infectious Disease,Infectious Disease Droplet Transmission,Person-to-Person Transmission,Autochthonous Transmission,Communicable Disease Transmission,Horizontal Transmission of Infection,Horizontal Transmission of Infectious Disease,Infection Transmission,Infection Transmission, Horizontal,Infectious Disease Transmission,Infectious Disease Transmission, Horizontal,Pathogen Transmission,Pathogen Transmission, Horizontal,Transmission of Infectious Disease,Transmission, Infectious Disease,Autochthonous Transmissions,Close Contact Infectious Disease Transmission,Close Contact Transmission,Close-Contact Transmissions,Community Transmissions,Disease Superspreader Events,Disease Superspreadings,Disease Transmission, Communicable,Event, Disease Superspreader,Events, Disease Superspreader,Infection Horizontal Transmission,Person to Person Transmission,Superspreader Event, Disease,Superspreader Events, Disease,Superspreading, Disease,Superspreadings, Disease,Transmission, Autochthonous,Transmission, Close-Contact,Transmission, Communicable Disease,Transmission, Infection,Transmission, Pathogen,Transmission, Person-to-Person,Transmissions, Autochthonous,Transmissions, Community
D035843 Biomedical Research Research that involves the application of the natural sciences, especially biology and physiology, to medicine. Medical Research,Experimental Medicine,Investigational Medicine,Investigative Medicine,Research, Biomedical,Research, Medical,Medicine, Experimental,Medicine, Investigational,Medicine, Investigative

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