ParentLink: Better and Safer Emergency Care for Children (Massachusetts)

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ParentLink: Better and Safer Emergency Care for Children - Final Report

Porter, S. ParentLink: Better and Safer Emergency Care for Children - Final Report. (Prepared by Children's Hospital Boston under Grant No. R01 HS014947). Rockville, MD: Agency for Healthcare Research and Quality, 2007. (PDF, 84.92 KB)

The findings and conclusions in this document are those of the author(s), who are responsible for its content, and do not necessarily represent the views of AHRQ. No statement in this report should be construed as an official position of AHRQ or of the U.S. Department of Health and Human Services.
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AHRQ-Funded ParentLink Project Aims to Make Pediatric Emergency Care More Patient-Centered

Stephen Porter, M.D.Can information technology (IT) actually make health care more patient-centered?

Stephen Porter, M.D., a pediatric emergency medical physician at Children's Hospital in Boston, believes that it can. With a grant from the Agency for Healthcare Research and Quality (AHRQ), he and his colleagues are finding that, even in the frenetic setting of a pediatric emergency department, IT can help engage parents actively - and productively - in their children's medical treatment.

"What motivated us to do this project, and what motivates everything about it, is really the mantra of pediatrics: The parent knows best," says Porter, the project's principal investigator. "Parents provide an integral link that helps clinicians treat a child in the emergency department. The question we want to answer is: How do we effectively bring that knowledge together--using information technology--to aid in decision support?"

Having accurate, complete medical information is critical to providing safe and effective emergency care, Porter says. And yet, due to the nature of that care, information errors and gaps are common in the ED. For example, based on an inaccurate allergy history, a physician may order a second-line antibiotic with a higher risk of side effects.Or, not knowing that a child suffers from persistent asthma, a physician may fail to prescribe a controller.

The key, Porter and his colleagues say, is to bring parents - and their unique knowledge of their children's medical history - more immediately and fully into the equation when a child arrives for care in the ED.

Using a technology called ParentLink, Porter and his co-investigators installed kiosks in emergency departments at Boston's Children's and South Shore hospitals that parents used to enter information about their children's symptoms, disease conditions, medications, and allergies.

Recognizing that an emergency room visit can be a frightening experience for a parent, the study investigators designed their research project carefully.

"No one comes to the ER hoping to be a research subject," Porter notes. "They come for care, and they don't see computers as care. So they have to see this as something that will help their child and respect the care process."

The project focused on four common conditions:  ear infections, head trauma, asthma, and urinary tract infections. The goal of the study was to evaluate the completeness and accuracy of information on symptoms, disease condition, medications, and allergies generated by parents using ParentLink versus information documented by clinicians, using structured telephone interviews as a gold standard.

"Take the example of a child who arrives in the ED with head trauma," Porter says. "The parent is able to input information like what happened, how and why it happened, the child's age, whether or not they have allergies--and have the information right there for the doctor or nurse to look it. For young children, we can even generate a 'scalp score,' which can feed into the decision making, and help a doctor in an urgent care setting or a pediatrics office asking, 'Should I really be sending the patient for a CT scan?'"

Porter says he is encouraged by parents' reactions to the technology. "We have found throughout the trial that parents feel that their time and effort are worthwhile, and that it's not a frustrating process." ParentLink, he notes, was designed to be easy to use and "neutral" to the user's technological experience.

He acknowledges, however, that ParentLink will not be appropriate for every emergency situation; nor will it be perceived as useful by every emergency provider. The parents who participated in the study were all interviewed and screened at the ED prior to enrollment. "At the end of the day, not everyone will be able to use this," Porter says. "But we're hoping that enough people will use it so that it makes a difference."

ParentLink is a stand-alone local application that runs off of any PC, using very basic applications. The rules-based functions map parents' data to national guidelines and current evidencefor treatment of common pediatric conditions. And the hospitals use barcode technology so that the computer will recognize the parent as a data enterer.

The software itself is available for download and review at

The output--what this data tracking system provides to decision support--is a symptom history, a preliminary list of allergies to medications, a list of current medications, and recommended medications or actions for diagnostic testing and treatment.

Porter and his colleagues are taking the data entered by parents and comparing it to data gathered by clinicians to see where information gaps occur most frequently, and to address what Porter calls "the human-based and environmental constraints of the emergency department setting." The clinical trial enrolled over 1,400 parents across the two sites. Preliminary data from the trial indicate that, more than 90 percent of the time, parents who started using ParentLink were able to generate information for use by ED providers. The impact of these data on the quality of ED decisions for testing and treatment, medication errors, and overall satisfaction is currently under analysis.

Porter and his colleagues are enthusiastic about what the results of this pilot could yield, and where the technology--and the collaboration between parents and clinicians--could take the future of pediatric emergency medicine.

"Medical school does not necessarily teach doctors to play well with others," jokes Porter. "But we know from practice that collaboration among physicians, nurses, patients, and their families are critical to good care, and that bringing patient safety and technology together can make a difference in quality. AHRQ is already there, and through its funding of projects like this, AHRQ is demonstrating viable and tangible ways we canuse collaboration and use these tools to provide better care." 

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Project Details - Ended


The ParentLink project developed and tested a parent-driven health information technology (health IT) with the goal of linking knowledge parents of children possess to a base of evidence in support of safe and effective care in the emergency department (ED). Optimal care begins with a complete patient history. ED-based health IT must support a data-intensive workflow and address problems of missing or inaccurate information. A quasi-experimental intervention study at two ED sites evaluated the effect of a patient-centered health IT. Three month control periods alternated with three month intervention periods when a parent-driven health IT application, ParentLink, generated a shared action plan. Primary outcomes included: 1) data quality of the history, current medication list, and allergies to medicines; 2) medication errors; and 3) incorrect actions (correct actions not initiated or incorrect actions taken) across four common disease states. A novel parent-centered health IT was developed and tested. 2002 parents were screened, and 1410 of 2002 were enrolled. 1097 subjects had a total of 2234 orders or prescriptions written. Preliminary analysis demonstrated improvements in data quality achieved with ParentLink for symptom documentation and the allergy history. Minimal impact on medication errors and incorrect actions was found during the intervention.