A quick search for the term “shared decision making” on PubMed shows an interesting progression. The term first appears in the title of a 1968 paper on education, and then in five papers in the 1970s. Likewise, it appears in only two papers in the 1980s. Fast forward to 2012, and “shared decision making” is included in the titles of 104 papers; in 2013 it appears in 126 studies; in 2014, 173 papers; and through March 2015, it has already been the focus of 37 studies.
Clearly then, the concept of shared decision-making (SDM) — in which patients and clinicians work together to make choices — has gained steam since it was first used. The Children’s Hospital of Philadelphia’s Alexander G. Fiks, MD, MSCE, has been on the leading edge of SDM-related research, contributing to a total of 10 SDM papers since 2010.
His latest is a Pediatrics study of an SDM Internet portal focused on asthma. Known as MyAsthma, the portal is a modification of Children’s Hospital’s MyCHOP site, which allows patients and families to request appointments, view medications, and see their child’s growth charts, among other things.
Much of Dr. Fiks’ research has been focused on using technology — such as electronic health records (EHRs) — to improve outcomes for pediatric patients. In addition to the SDM study in Pediatrics, he recently published an editorial in the same journal noting health departments and outside groups should collaborate to effectively use electronic data.
“With nearly 80 percent of pediatric practices now capturing data in EHRs, a remarkable opportunity exists to use these data to improve health outcomes,” Dr. Fiks wrote.
For the last several years, Dr. Fiks has been working with other CHOP investigators — including the Department of Biomedical and Health Informatics’ (DBHi) Robert Grundmeier, MD as well as DBHi’s Dean Karavite, MS, and PolicyLab’s Stephanie Maybe, MHS — on the MyAsthma portal.
Portal Proved Feasible, Improving Outcomes
In the current study, Dr. Fiks and colleagues studied the acceptability, feasibility, and impact of MyAsthma. The researchers conducted a six-month trial in which they enrolled 60 families, 30 of whom were randomized to an intervention group who had access to the MyAsthma portal and received training on its use, as well as periodic reminders to use it.
The portal, which is linked to patients’ EHRs, features tools to track symptoms; a timeline of asthma control assessments; asthma educational information; and details on each patient’s care plan and team. Families who used the portal were sent e-mail reminders to complete surveys.
Based on surveys of both groups of patients, the researchers found that not only was the portal feasible — with more than 77 percent of the intervention group completing more than one survey — but also that it was acceptable to the majority of families. Many reported that the portal “made it easier to care for their child’s asthma, and that they were satisfied with the portal,” the researchers write.
“It made me more aware of how serious his asthma could get if he did not maintain his medication administration,” one parent reported in the Pediatrics study. Another parent noted communication “with our providers has been much more convenient this way. I think it may have even cut out some unnecessary visits.”
In addition, families randomized to use the portal reported fewer visits to the emergency department, and saw a slight decrease in the number of school days missed for asthma.
In all, the study’s results “underscore the value of providing decision support to families at home,” the investigators write. The study’s results, they say, “demonstrate the additional value of decision support systems that engage families as well as the clinical team and justify the continued development and evaluation of decision support systems to foster shared, as opposed to simply clinician-focused, decision-making.”