Patient and doctor discussion

Patients' roles in governance of learning: Results from a qualitative study of 16 learning healthcare systems

Patients' roles in governance of learning: Results from a qualitative study of 16 learning healthcare systems

Patient and family engagement has been identified as key to fulfilling Learning Healthcare Systems (LHS) promise as a model for improving clinical care, catalyzing research, and controlling costs. Little is known, however, about the state of patient engagement in the learning mission of these systems or about what governance structures and processes facilitate such engagement.

In this publication, authors including HIP Investigator, Dr. Rachel Grob conducted a qualitative analysis of how patients and family members are engaged in the governance of systematic learning at 16 purposively sampled LHSs based on telephone interviews with 20 patient/family leaders and 79 employee leaders.

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Little girl sleeping hospital bed

Considerations to Support Use of Patient-Reported Outcomes Measurement Information System Pediatric Measures in Ambulatory Clinics

Considerations to Support Use of Patient-Reported Outcomes Measurement Information System Pediatric Measures in Ambulatory Clinics

Patient-reported outcome (PRO) measures quantify patient health and health-related experiences directly from the patient perspective, which is important for patient-centered care. PROs can be used to monitor trends in patients’ symptoms, function, or well-being; to inform decision-making; and to prompt additional patient education or referrals. Use of PRO scores in clinical practice has improved recall of patient concerns by clinicians, increased shared decision-making, and enhanced care processes and treatment planning.

The National Institutes of Health Patient-Reported Outcomes Measurement Information System (PROMIS) provides standardized PRO measures for use in clinical practice, with specific measures available for adults, children from 8 to 17 years of age, and parent proxies for children 5-17 years old. In this publication, HIP Investigator Dr. Elizabeth Cox et al. sought to find the benefits of using PROMIS measures in pediatric clinical settings, and found that health system and clinician leaders must attend to how the measures are implemented and used, as well as the support required to achieve this goal.

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Female doctor smiling

Practice Guidelines for Ocular Telehealth-Diabetic Retinopathy, Third Edition

Practice Guidelines for Ocular Telehealth-Diabetic Retinopathy, Third Edition

The third edition of the Practice Guidelines for Ocular Telehealth-Diabetic Retinopathy includes fundamental requirements to be followed when providing medical and other health care services using telecommunication technologies, and any other electronic communications between patients, practitioners, and other health care providers, as well as “best practice” recommendations. These guidelines were co-authored by HIP Investigator, Dr. Yao Liu and aim to assist providers in pursuing a sound course of action in providing safe and effective medical care using telehealth tools based on current scientific knowledge, technological requirements, and patient needs.

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Girl with Diabetes

Factors associated with health psychology use in pediatric type 1 diabetes

Factors associated with health psychology use in pediatric type 1 diabetes

For children with type 1 diabetes (T1D), self-management is complex and requires coordination between a child and his or her family multiple times every day to test blood sugars, determine and administer insulin doses, and adjust as needed. The consequences of suboptimal self-management are a combination of short- and long-term complications, some of which are life-threatening.

In this publication, HIP Investigator Dr. Elizabeth Cox et al. evaluated the prevalence of health psychology use in children with T1D and the association of this use with individual and contextual characteristics.

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Doctor checking sugar level

Impact of family‐centered tailoring of pediatric diabetes self‐management resources

Impact of family‐centered tailoring of pediatric diabetes self‐management resources

Behavioral interventions to improve self‐management, glycemic control, or quality of life (QOL) for children with type 1 diabetes have small to moderate positive effects, but a host of challenges diminishes their effectiveness in practice. A group of authors including HIP Investigator, Dr. Elizabeth Cox evaluated the hypothesis that delivering self‐management resources in a family‐centered manner, using PRISM to guide resource selection, will result in better glycemic control and quality of life for children and their parents.

Authors found that tailored self‐management resources may improve outcomes among specific populations, suggesting the need to consider families' self‐management barriers and patient characteristics before implementing self‐management resources.

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FCR

System Factors Influencing the Use of a Family-Centered Rounds Checklist

System Factors Influencing the Use of a Family-Centered Rounds Checklist

Checklists are used to operationalize care processes and enhance patient safety; however, checklist implementation is difficult within complex health systems. A family-centered rounds (FCR) checklist increased physician performance of key rounding activities, which were associated with improved parent engagement, safety perceptions, and behaviors. To inform FCR checklist implementation and dissemination, a team of authors including HIP Investigator, Dr. Elizabeth Cox assessed physician compliance with this checklist and factors influencing its use.

Authors found that multiple factors within hospital systems may influence FCR checklist use. Strategies, such as providing rounding schedules and mobile computers, may promote optimal engagement of families during rounds and promote pediatric patient safety.

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Pregnant woman with doctor

Qualitative Research on Expanded Prenatal and Newborn Screening: Robust but Marginalized

Qualitative Research on Expanded Prenatal and Newborn Screening: Robust but Marginalized

Screening technologies are iteratively transforming how people experience pregnancy and early parenting. A new class of newborn patients are being created and particular forms of parental vigilance are emerging. HIP Investigator Dr. Rachel Grob wrote extensive qualitative literature that documents all of these social phenomena, and more, in connection with the spread of prenatal and newborn screening.

This essay uses qualitative research on prenatal and newborn screening as a case study for illustrating the broad methodological, ideological, and dialogical issues at stake.

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Medical team meeting

What Are We Measuring? Evaluating Physician-Specific Satisfaction Scores Between Emergency Departments

What Are We Measuring? Evaluating Physician-Specific Satisfaction Scores Between Emergency Departments

Most emergency departments (ED) use patient experience surveys (i.e., Press Ganey) that include specific physician assessment fields. A team of authors including HIP Investigator, Dr. Brian Patterson determined whether Press Ganey ED satisfaction scores for emergency physicians working at two different sites were consistent between sites, and to identify factors contributing to any variation.

The group found that Press Ganey satisfaction scores for the same group of emergency physicians varied significantly between sites suggesting that these scores are more dependent on site-specific factors, such as wait times, than a true representation of the quality of care provided by the physician.

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Mother and daughter with staff

Evaluating Integrated Care for Children: A Clarion Call or a Call for Clarity?

Evaluating Integrated Care for Children: A Clarion Call or a Call for Clarity?

“Integrated care” is often used to describe concepts such as coordinated and seamless care instead of the often fragmented and episodic care that patients receive. Integrated care reflects the aspirations of modern health care systems and receives significant academic attention. Authors Dr. Eyal Cohen and HIP Investigator, Dr. Ryan Coller conducted a broad search strategy to identify randomized controlled trials comparing integrated care with usual care.

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Big Data Word Scramble

The Importance of Health Insurance Claims Data in Creating Learning Health Systems: Evaluating Care for High-Need High-Cost Patients Using the National Patient-Centered Clinical Research Network (PCORNet)

The Importance of Health Insurance Claims Data in Creating Learning Health Systems: Evaluating Care for High-Need High-Cost Patients Using the National Patient-Centered Clinical Research Network (PCORNet)

Case management programs for high-need high-cost patients are spreading rapidly among health systems. PCORNet has substantial potential to support learning health systems in rapidly evaluating these programs, but access to complete patient data on health care utilization is limited as PCORNet is based on electronic health records not health insurance claims data. Because matching cases to comparison patients on baseline utilization is often a critical component of high-quality observational comparative effectiveness research for high-need high-cost patients, limited access to claims may negatively affect the quality of the matching process. A team of authors including HIP Investigators Dr. Maureen Smith and Dr. Menggang Yu sought to determine whether the evaluation of programs for high-need high-cost patients required claims data to match cases to comparison patients.

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