Making Families "Active Partners" in Care

Let’s face it: we live in the future. At no point in human history has so much information been so accessible to so many people. The rise of the personal computer, then the internet, and then smartphones that (in addition to functioning as phones) can browse the internet from anywhere, means that more people than ever have access to more information than they could ever need.

It also means that patients and families have access to more detailed health information than ever before. Alexander G. Fiks, MD, MSCE, co-medical director of The Children’s Hospital of Philadelphia’s Pediatric Research Consortium and a PolicyLab faculty member, works to best make sense of, and use, the wealth of health information available clinicians, researchers, and families.

Dr. Fiks has been focused on developing and testing shared decision making (SDM) tools to help families make informed, engaged care choices. SDM is a method of making treatment decisions wherein doctors and families make choices together by actively communicating and contributing their knowledge and preferences to the decision-making process.

An approach to healthcare that is being used increasingly in adults, SDM “has been shown to lead to more successful treatment outcomes for patients and increased satisfaction among physicians,” said Dr. Fiks.

He has been leading the development of an interactive SDM “portal” that patients can use at home. The portal, known as the “Shared Decision Making Portal for Pediatric Chronic Illness,” works with CHOP’s new MyChart patient site. By providing access to portions of medical records remotely, MyChart allows families to request appointments, view test results, and access health summaries and growth charts.

The SDM portal is a modification of MyChart that greatly expands MyChart’s capabilities. While the pilot version of the portal is focused solely on asthma, Dr. Fiks and his team hope to eventually introduce versions geared toward other diseases.

The portal contains a number of interactive features. For example, the portal allows parents to fill out monthly symptom and care surveys, which can help free up time in the examination room. The system will send families regular reminders to fill out these care surveys, and through the portal doctors will be able to see detailed timelines of how their patients are progressing.

“Research shows that patients adhere much better to the treatment options that they are comfortable with and that are the most practical for them,” Dr. Fiks said, pointing out that “choosing a treatment that doesn’t “fit” can lead to unsuccessful results.” Overall, projects like the new portal, which use the wealth of information available to doctors and patients, make families “active partners in care,” he noted.

To learn more about the innovative work being done by Dr. Fiks and his colleagues, see the Research Annual Report.