A patient-centric model of care may be just what the doctor ordered
Nothing can prepare a parent for the shock that their child has autism. As we observed the sixth annual World Autism Awareness Day on April 2, one in 88 U.S. children has been identified with an autism spectrum disorder (ASD), according to the Centers for Disease Control and Prevention.
For parents and family members, the news is instantly life-changing as they embark on a journey to understand and care for their loved one’s special needs. It’s a journey they know will likely never end. All too often, this journey requires family caregivers to:
In the end, every waking moment is spent reading, learning, talking, and caring for their loved one’s illness. It’s a vicious cycle that inevitably results in isolation, depression, and burnout. Families already struggling to cope with illness end up additionally burdened with the emotional and psychological fallout.
Children with autism and their families should be surrounded by medical experts through mobile and cloud technologies.
The industry traditionally spends significant IT investment on healthcare payers and providers, empowering them in a way that only residually trickles down to patient outcome improvement. If patient outcomes and behavioral changes are key to reducing healthcare costs and improving lives, it only makes sense to build a model around patients. However, ASD is among a group of conditions in which patients cannot fully articulate themselves and rely on caregivers (particularly family members) to advocate on their behalf.
Since family caregivers are the foot soldiers laboring in the trenches, they deserve the technology to support them in their daily struggles. At the same time, the healthcare industry needs the data associated with those daily efforts and interactions to win the war over the long term.
Caregivers of autistic children and research institutions each face their own challenges. For caregivers whose day-to-day circumstances can change at a moment’s notice, access to credible medical information in real time is essential. According to a 2009 study by the National Alliance for Caregiving, 78 percent of caregivers report needing more help and information related to at least 14 specific topics. Medical professionals in this community could help stem information overload by providing medical information, health improvement plans, and interventions compiled by reputable top-tier healthcare partners.
Research institutions, meanwhile, struggle to obtain meaningful amounts of patient data other than through expensive studies. Patients and their caregivers should be able to securely record and privately transmit data such as prescription adherence, behavioral observations, and other metrics.
The benefit to society is threefold. First, it provides family caregivers with the information, community, and relief they so desperately need. Secondly, it increases patient engagement in managing their condition by providing them with cutting-edge technology and the support network to cheer them on. Lastly, it provides researchers with the quantity and quality of data they need to make a long-term difference.
No longer theoretical, this marriage of technology and a patient-centered care model could represent one more step in a global journey to help people live better.
For more information, see my colleague Layla Sabourian's blog post on how the new Care Circles consumer health application leads the way for SAP's first Autism Awareness Panel. |
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