What Caregivers Need from Health IT

As we become immersed in the sights and sounds of the holiday season, there is a largely invisible group of people struggling to balance its daily responsibilities with the added stress of the holidays – family caregivers. I am one of 93 million (i) family caregivers in the United States who will provide an estimated $522 billion (ii) in care for our loved ones. We are the perfect audience to both use and influence the development of health information technology. But these emerging tools must support our specific information needs to become a permanent component of our caregiving toolbox.

Healthcare and social services information is the currency of the family caregiver. As it turns out, we need different information at different points in time, depending on the phase of caregiving we find ourselves in. I refer to this as the Caregiving Information Cycle.


Typically, a caregiver is either: dealing with a crisis, assisting a loved one through a care transition or in maintenance mode – just trying to navigate day-to-day challenges.

In the Caregiving Information Cycle, a crisis refers to an accident, injury, or new diagnosis. Care transition refers to a new care setting or new phase of recovery/illness. Maintenance refers to a chronic condition or permanent disability.

Family caregivers may find themselves in each phase of the Caregiving Information Cycle many times over the course of their caregiving experience. Our information needs change as we move between phases, sometimes quickly and unpredictably. To find out more, download the full white paper by clicking HERE.

About the author: MaryAnne SterlingMaryAnne Sterling is the Co-founder of Connected Health Resources. She has been a caregiver for her aging parents for 18+ years. She is a renowned speaker and educator on Alzheimer’s Disease and its impact on family caregivers. Her personal story has been featured in Kiplinger, New York Times, USA Today, and the Wall Street Journal.

She serves as Ambassador for both the Alzheimer’s Association and the Patient Centered Outcomes Research Institute (PCORI). She also serves on the ONC Health IT Policy Committee’s Consumer Workgroup and is a former Executive in Residence for the Healthcare Information Management and Systems Society (HIMSS) Foundation, Institute for e-Health Policy, and now a member of the HIMSS Patient and Family Caregiver Advisory Council. MaryAnne received her bachelor’s degree in  biology and biotechnology from the University of Nebraska at Omaha.

(i) Fox, Susannah, Maeve Duggan, and Kristin Purcell. Family Caregivers Are Wired for Health. Rep. Pew Research Center, 20 June 2013. Web. 16 Nov. 2014.

(ii) Amalavoyal V. Chari Ph.D., John Engberg Ph.D., Kristin N. Ray M.D. Assistant Professor of Pediatrics and Ateev Mehrotra M.D.,M.P.H. The Opportunity Costs of Informal Elder-Care in the United States: New Estimates from the American Time Use Survey. Article first published online: 7 OCT 2014

About Ian E. Hoffberg

Manager, HIS, HIMSS Center for Patient and Family-Centered Care. Focus on Patient Engagement and health IT.
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