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Consumer Health Technology and Children with Complex Needs

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Recently, we’ve been asked a number of times about how NexJ Connected Wellness might apply to the unique challenges faced by families of children with complex needs. Consumer health technology has already been shown to help adults, but how could they help with complex health issues their families?

First, let’s consider how much families of children with complex needs must to learn about caring for their children. To name just a few subjects, they need to become experts in the biology of their child’s condition, the pharmacology of medicine regimes and the technology of any relevant assistive devices. The precious minutes in conversation with their healthcare professionals are often the most important time for families to acquire the salient pieces of information. These teachable moments are when providers share their more important information to help families make critical decisions concerning treatments.  Not only do families need to learn and retain this information individually; they often need to share their learned knowledge with their extended network of caregivers –nannies, grandparents, aunts, uncles and neighbors. Yet 40-80% of the information provided by healthcare practitioners is forgotten immediately and patients accurately retain only about 15 percent of spoken information.  NexJ Connected Wellness enables healthcare professionals to give families an audio-visual record of the teaching session during the  visit including the educational presentation that translates complex concepts into easy to understand infographics that can include personalized annotation, photos of relevant documents, and the audio of the discussion.  And, critical for parents and caregivers of children, this record can be shared with any of the people trusted with caring for the child.

Second, achieving the best outcomes for children requires families to become active partners with their healthcare providers. NexJ Connected Wellness has essential tools to enable providers and families to collaborate more effectively. Patient-/Family-friendly care plans give families a quick and easy to understand reference about their child’s condition, treatment plans and what to do in case of adverse or expected events.  The results of using patient-friendly care plans have been dramatic. A pioneering study supported by NexJ Health at Harvard Medical School affiliate Beth Israel Deaconess Medical Center (BIDMC) showed that: 96 percent of patients were satisfied with their physician when patient-friendly care plans were used versus 38 percent satisfaction with their prior doctor visit; an 80 percent reduction in patient follow-up phone calls to their physician; and, 69 percent of patients reported that they shared the plan with their families and friends. Notably, one of the Principal Investigators in this study was a Neo-natal physician.

In addition to patient-friendly care plans, secure messaging allows families to conveniently communicate with their healthcare providers as they move through the plan, and enables providers to respond efficiently. Scheduling and Assessments offer convenience for families in executing the plan, and administrative efficiency for providers. The Health Library enables providers and families to maintain a personalized collection of the trusted content they find most useful. Finally, the Circle of Care allows anyone entrusted with caring for a child – school teachers, specialists, or siblings – to inform and coordinate their support.

Finally, families of children with complex needs are typically tired and need help beyond the point of care and into their daily lives. Children often begin their therapies at a hospital, rehabilitation centre or a specialist clinic and continue their progress at home and in their communities. NexJ Connected Wellness offers a unique solution for delivering personal health coaching to families.  Health Coach enables families to track therapy metrics, monitor consumer devices that the family might be using (such as a Fitbit or Withings) and enables healthcare professionals to provide virtual guidance and support to families as children transition across all of the locations where the children are being supported and monitoried – from the hospital to ambulatory clinics to schools and home.

Often we hear that patient portals that enable access to health information are the next logical information technology solution being considered by providers of healthcare. We think essential elements of a portal that truly supports families of these children include: tools to learn, remember and share complex information; tools to collaborate as active partners in their child’s healthcare journey; and support beyond the point of care and into their daily lives.