Developing principles of patient engagement with children

Sept. 3, 2019

At NCATS (National Center for Advancing Translational Sciences), we measure the effectiveness of what we do at every stage of the translational odyssey, from basic discovery to public health. At every juncture, we ask a hard question: What impact has this work had on patients? Without that impact, the NCATS mission—translation to health—has not been truly advanced.

Patient engagement is at the core of everything NCATS does. Our motivation is simple: We believe that partnership with the people we hope will benefit from our science will make the translational process more efficient, more relevant and more successful.

Like most things in translation, however, such engagement and the measurement of its impact (or lack thereof) is easier said than done. This is because the science of patient engagement is in its infancy—that is, the general principles of how, with whom, when and on what topics engagement is most effective in making the translational process more effective are still being defined.

NCATS’ approach to solving this knotty problem is the same as in other areas, including training and therapeutic development to “walk in the shoes” of those we wish to understand and thus better collaborate with.

The Children’s Inn at NIH is one of NCATS’ most valued collaborators in patient engagement. The Inn is a residential “Place Like Home’’ for families with children participating in research studies at the NIH Clinical Center. While NIH takes care of the child’s medical needs, The Inn tends to the child’s heart, soul and spirit and assists families as they manage the stress of having a child with a serious illness.

NCATS collaborates with The Children’s Inn in many ways. Our annual Rare Disease Day event is a partnership with the Inn. NCATS volunteers serve dinner to the children and their families at the Inn every year, something my wife and I always look forward to. I have taken part in multiple Children’s Inn Board events and have hosted board members at our labs so they can understand the process of intervention development, and we can understand the challenges they face. Through our interactions, we gain insights that can help researchers design more effective research protocols and clinical trials and help ensure the outcomes are relevant to and directly address their needs. It is life changing for our researchers to meet and interact firsthand with the people they are trying to help.

Collaborations like this manifest NCATS’ beliefs and what we strive to do: place patients at the center of all our efforts and demonstrate the important role they play in helping us break through scientific and operational barriers so more patients have the treatments and therapies they need.

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