I am a caregiver. At least my wife tells me that I am. Until earlier this year I just thought that I was being a good husband, son, and father.
Tracy has a chronic illness. About a year ago she starting writing about the patient viewpoint so that she could, as she puts it, “speak for those whose voices are not quite loud enough” and “provide perspective to those who want to listen.”
It was by looking at my role through Tracy’s eyes – from the patient perspective – that I began to understand that I was a caregiver not only to Tracy but to other family members as well. Carers Canada, an alliance of diverse partner organizations that work collectively, and autonomously, to identify and respond to the needs of caregivers (whom they refer to as a “carer”), defines a “carer” as:
“A person who takes on an unpaid caring role for someone who needs help because of a physical or cognitive condition, an injury or a chronic life-limiting illness.”
I am, it seems, not alone in my caregiving role. According to a 2012 Statistics Canada study, “28% of people aged 15 and over, had provided help or care to a relative or friend with a chronic health problem.” Their efforts, according to a CARP (Canada’s largest advocacy association for aging Canadians) briefing note on caregiver support, are “conservatively estimated at $25-26 billion annually, taking into consideration the number hours of care provided and market wages.”
First launched in 2008 and updated in 2014 by Carers Canada, the Canadian Carer Strategy identifies five universal priorities based on input from caregivers and caregiver support groups. One of these five priorities is to “enable access to user friendly information and education” which includes caregivers using technology to “support safe, effective care, gain knowledge and communication with others.”
This view on the need for digital health tools targeting caregivers is shared by MaryAnne Sterling, co-founder of Connected Health Resources and recognized speaker and educator on the impact of Alzheimer’s Disease. She believes that caregivers are “the perfect audience to both use and influence the development of health information technology.”
Unfortunately, the currently available tools fall short of meeting caregiver needs. In a white paper entitled What Family Caregivers Need from Health IT and the Healthcare System to be Effective Health Managers, Ms. Sterling claims that “there is a gap in understanding the real time data and information needs of caregivers” and asserts that the healthcare system is not “prepared for and willing to collaborate with them [caregivers] as they support a loved one’s treatment or recovery.”
Based on my experiences to date as a caregiver, I concur with Ms. Sterling’s observations. I would add that the digital health tools for patients are also not nearly as useful as they could be and are rarely integrated into the care process by the various health service providers with whom Tracy and I interact.
In the past six months both Tracy and my Dad have been hospitalized, Tracy for issues unrelated to but exacerbated by her chronic illness and my Dad for a serious but fortunately treatable illness. Not surprisingly, as I accompanied them through their hospital stay, I was constantly on the lookout for opportunities to apply digital health to improve the patient experience. Two observations in particular have stuck with me:
- Discomfort and pain raises anxiety levels and interferes with a patient’s ability to fully understand what they are being told. I quickly learned to assess by their facial expressions and tone of voice whether Tracy or my Dad fully comprehended what they had been told and to intervene when needed to ensure that questions were fully answered.
- Waiting is an excruciatingly frustrating experience when you don’t long how long the wait will be. While patients would like whatever they are waiting for to happen as soon as possible (e.g. when will the doctor be available to discuss my test results?), knowing when it will happen helps them manage their expectations and allows them to turn their attention to other matters while they wait.
Despite the large gaps that exist between what Tracy and I need to manage her health and the digital health tools that are currently available, some of the tools that we have tried offer a tantalizing glimpse of what is possible. Patient portals, for example, while falling short in many areas, offer access to test results and consultation notes that Tracy and I use to review what had been discussed during our last encounter and to prepare for our next visit. As Tracy notes in a July 2017 blog post, caregivers are “the people that stand up for us when we cannot, that hold us when we need holding, that quietly manage their own needs after ours.” We are, in my view, an underutilized resource with too few digital health tools at our disposal. Let’s change that.