Patient Engagement Study Set to Inform National Policy


Clinicians tapping on computers during patient visits has become routine in the era of electronic health records (EHRs). Now families are increasingly encouraged to spend some screen time on their own entering health-related preferences and goals.

“Incorporating these patient-generated reports systematically into the electronic data we collect can help healthcare providers to tailor treatment and respond to patients’ and families’ most important concerns,” said Alexander G.  Fiks, MD, MSCE, assistant professor of pediatrics and co-medical director of the Pediatric Research Consortium (PeRC) at CHOP.

Patients’ ability to submit health information and actively participate in their healthcare is a main focus of Meaningful Use Stage 3 (MU3) criteria. The federal government allocated $27 billion to fund a staged program to boost the meaningful use of EHRs. A phased approach to participation helps eligible providers move from creating information in Stage 1, to exchanging health information in Stage 2, to focusing on improved outcomes in Stage 3.

Yet a knowledge gap remains one of the best ways to accomplish MU3’s objectives, so the Agency for Healthcare Research and Quality funded 12 research projects to provide real-world evidence to inform MU3 policy development and implementation. Dr. Fiks is the principal investigator of one of those studies underway at The Children’s Hospital of Philadelphia. It aims to help policymakers understand the feasibility of using patient portals linked to EHRs to foster patient engagement in pediatrics.

“Data is lacking on which Meaningful Use goals can be reasonably achieved in pediatric primary care settings,” Dr. Fiks said. “We are on track to potentially shape what the expectations should be about using patient portals and these types of tools to collect patient reported outcome data as Stage 3 is rolled out.”

Patient portals are online healthcare applications that allow patients to communicate with their healthcare providers, such as by transferring information about upcoming appointments and test results. The study will use “MyAsthma,” a patient portal created and tested at CHOP that offers advanced functionality to increase shared decision making among parents and clinicians.

MyAsthma provides asthma education, collects patient-reported outcomes, evaluates medication use and side effects, and tracks parent’s preferences and goals. The portal transmits information entered by parents to the clinician’s office, which allows the medical team to address immediate problems and adjust treatment if needed. Dr. Fiks and colleagues recently described the portal’s development in the April issue of The Journal of Ambulatory Care Management.

Asthma an Ideal Model

Asthma is well-suited to the study of patient portals because it has a high prevalence, affecting more than 7 million children in the U.S., especially in socioeconomically disadvantaged communities. It requires symptoms to be tracked over time, and it poses a significant burden on patients’ and families’ quality of life. Patients with persistent asthma regularly use controller medications, so patient portals also may help in medication management for this population.

“On a monthly basis, families check in,” Dr. Fiks said, “so their healthcare isn’t just tied to office visits. There is ongoing monitoring of how kids with this condition are doing.”

A unique aspect of the study is its approach to primary care research across two networks. The American Academy of Pediatrics electronic subnetwork of Pediatric Research in Office Settings (ePROS) is collaborating with PeRC. This is enabling the researchers to evaluate two types of patient portals used across multiple EHR vendors in varied pediatric primary care settings with at least 20 percent Medicaid patients.

“Little is known about the effectiveness of meaningful use policy, and even less is known about how it applies to pediatrics,” Dr. Fiks said. “Most meaningful use research has primarily been structured within adult health care settings. Being able to inform how the process works within pediatric settings is important because the needs of children are different.”

Dr. Fiks anticipates a rapid turnaround time for study results. The majority of data from parent surveys will be collected by the end of summer, followed by individual interviews of parents and practitioners to describe any factors that facilitated or posed barriers to patient portal adoption.  He expects to identify strategies that will directly inform national healthcare priorities for MU3, which are scheduled to take effect in 2017.

“There’s a lot of satisfaction for me as a pediatrician in thinking about ways to transform primary care using technology so that we can more effectively help kids with chronic conditions who need the most attention,” Dr. Fiks said.

CHOP’s Center for Biomedical Informatics, Center for Pediatric Clinical Effectiveness, and PolicyLab also are contributing to the study.

“It is really a great collaboration among groups that brings together CHOP’s health service research expertise, policy expertise, and technological expertise,” Dr. Fiks said.

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