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Invited Commentary
September 2015

A User-Centered Design Approach to Information Sharing for Older Patients and Their Families

Author Affiliations
  • 1Information Technology Services, Stanford Health Care, Stanford, California
  • 2Division of Emergency Medicine, Department of Surgery, Stanford University School of Medicine, Stanford, California
  • 3Division of General Medical Disciplines, Department of Medicine, Stanford University School of Medicine, Stanford, California
JAMA Intern Med. 2015;175(9):1498-1499. doi:10.1001/jamainternmed.2015.2907

The development of technology that drives and enables engagement with patients and their families is accelerating at an unprecedented pace. Demand is driven by patients seeking the best quality and experience as well as by health care organizations, payers, and policy makers in response to health care costs, especially for the older US population. Per-person personal health care spending in 2013 for individuals 65 years or older was 5 times higher than spending per child and 3 times higher than spending per working-age person in 2010.1 With nearly 60% of seniors reporting use of the Internet in 2014 (up from just 35% in 2008),2 the importance of digital health care technology for the elderly population is paramount.

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    1 Comment for this article
    Speaking for a silent army of caregivers
    Beth N. Rossheim, Ph.D., M.Ed. | Independent Scholar, Caregiver, Student (College of William and Mary)
    There is a common misperception that volunteer family caregivers are either spiritually guided by a saintly desire to do good, guilt ridden that they cannot do more,, or strong-armed into the position by necessity or family pressure. In truth, many undertake this job out of family loyalty, and a realization that not to undertake this task will cause either harm or death to the care recipient. Few would wish to shoulder that knowledge. Fewer understand that they are also putting their own well-being and/or life in jeopardy.

    What is truly lacking is the willingness of the American government to
    respond to the dire health needs engendered by (emotional, physical and financial) of chronic caregiving. One cannot give up one's life, work, social engagement and long-term health without harm. How can we help?

    As a 17 year veteran of this process and a mental health counselor, I learned that 1) every primary care doctor was totally uninterested in the caregiver's well-being; 2) the government offered no benefits for volunteer services, such as tax credits, Social Security credits, or patient respite care; 3) hiring untrained staff to help with the burden was a serious financial burden (not deductible) with risk; 4) psychologist and mental health counselors were totally unfamiliar with the issues of caregivers; 5) friends and relatives were willingly oblivious to the situation; and 6) every research study (however clever and complete) only served to prove these obvious burdens.

    I sincerely hope that JAMA may call this issue to public attention and remediation. The lives of 40 to 44 million caregivers (Wolff, 2015) are a stake.