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Improving Outcomes for Hospitalized Children-Include the Voice of the Patient and Caregiver When Prioritizing for Implementation.

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Prioritization within research is not a new concept. Federal funders and various entities within the Departments of Health and Human Services, including the National Institutes of Health, have used prioritization… Click to show full abstract

Prioritization within research is not a new concept. Federal funders and various entities within the Departments of Health and Human Services, including the National Institutes of Health, have used prioritization as an initial step to let clinicians and researchers know the most important research questions that need answering, thus helping promote research funding, research training, and research methods for these areas—all with the goal of improving patient outcomes.1 In 2012, the Pediatric Research in Inpatient Settings Network conducted a study to define research priorities for the field of Pediatric Hospital Medicine (PHM) based on identifying conditions with high volume, high costs of care (using research methods to relate charges back to costs), and high interhospital variation in care.2 This study was recently repeated using similar methods to identify what had changed in the interval.3 Health care systems are arguably the most experienced at using prioritization as an annual practice to determine their areas of focus. Senior leadership of each health care system prioritizes what they are going to focus on the subsequent year based on their organizational strategy, and then aligns their resources to improve that outcome. They then implement and use data to track and assess whether they met their medical/health, service, or financial outcome goal (some priorities may include more than 1 outcome). The idea is that the tighter the connection between health system leaders’ priorities with the front-line professionals—including physicians, nurses, and other allied health care workers—the more successful they are in implementing the priorities. When health care systems, clinicians, and researchers align in their priorities, this connection is strengthened. However, we have neglected an important constituency in the prioritization of PHM: the voice of the patient and parent/caregiver. The study of Gill et al4 provides the patient and caregiver voice to prioritization for questions around hospitalized children. The Canadian Pediatric Inpatient Research Network (PIRN) used a modified Delphi approach with nominal group techniques to broadly survey participants across Canada. Through an iterative process of refining the list of questions, the investigators found that there were very few (4 of 495) questions already answered, a longer list of 71 questions that identify other important clinical areas needing more research, and a top 10 list of prioritized research questions that need answering within PHM. This list includes focusing on issues such as optimizing the care of children with medical complexity, improving communication, supporting Indigenous families, providing mental health supports, promoting shared decisionmaking, and mitigating time spent in the hospital. What do we do now that we know what young people and parents/caregivers in addition to health care professionals think are the most important questions to answer for PHM? To answer this question, let’s first quickly review what PHM researchers have added to this American Board of Pediatrics specialty (established in 2019) thus far to improve the outcomes of children who are hospitalized. The PHM researchers initially focused their efforts on describing substantial variation in care in the hospital setting for children. Some of that variation is expected, for example, when sufficient evidence does not exist. The variation often is unnecessary when the evidence base is sufficient but hospitalists are not practicing using the evidence-based best standard. For the lack of evidence, PHM research networks have responded by generating answers based on high-quality research for what to do in those clinical situations. For example, the Pediatric Research in Inpatient Settings Network has published the optimal route of antibiotics (oral or intravenous) for use in + Related article

Keywords: health; voice; prioritization; health care; research

Journal Title: JAMA network open
Year Published: 2022

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