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Three Ways Technology Can Make a Dent in Autism Research Today

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:

  • Physically move their home closer to adequate services
  • Constantly fight for time with school support staff, speech therapists, and social workers
  • Build a community-based support network
  • Navigate through an ocean of uncategorized and unproven information

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. 

  1. Create a patient-centered model of care.  Mobile, cloud, and in-memory analytics technologies have evolved to a point where they stand to make a huge difference together.  However, they will only likely succeed if put to work within an alternative healthcare engagement model.  Patients and their family caregivers must reside at the nucleus of this model, acting as both the primary beneficiaries and catalysts for change.  We could surround them in this model with a closed, private network of experts who share a common goal in improving the patient’s outcome and relieving the caregiver’s stress: medical professionals, social workers, family, and friends. 

  2. Equip patients and caregivers with tools to use on the go. Families with autistic children follow regular daily routines of work, play, and rest.  During these times, caregivers and therapists are asked to monitor and gauge a number of metrics ranging from the objective to the subjective, such as the child’s temperament, ability to focus on tasks, emotive responses, or number of tantrums.  Taking the time to make these observations and recordings in real time is difficult or even impractical, but can be less so using mobile technology.  As an enterprise-wide enabler of design, user experience, and gamification methodologies, SAP possesses the talent and technology to create innovative mobile applications that are beautiful, functional, and irresistible to use.

  3. Connect patients and caregivers to the medical community in the cloud.  Mobile applications can bridge the gap by humanizing stakeholders and getting data to those who need it most.  Connecting these stakeholders together in the cloud is the logical next step in creating a holistic community able to sustain itself for 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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  • Good stuff, Louis! It sounds like this could revolutionize healthcare.

    Is there a lot of enthusiasm for this approach among people who could make it happen? What obstacles stand in the way of this reform?

    • Thanks for the feedback, Derek.  There is a lot of enthusiasm around this approach, and it isn't limited to autism.  One of the aspects contributing to this interest is the surge in growth of the family caregiver.  According to the National Alliance for Caregiving, there are almost 66 million Americans providing unpaid “informal care” to someone who is ill, disabled, or aged.

      This Youtube video does a great job at capturing sentiment from the healthcare industry around the innovations I wrote about.  It was taken a few weeks ago at the annual meeting of HIMSS, the largest healthcare IT not-for-profit organization.