Caregiving in an Electronic Age

As the youngest child in a relatively large extended family, I never thought I would be called upon to help my mom be a caregiver for my grandparents, who throughout my life were incredibly healthy.  Unfortunately, dementias, including Alzheimer’s disease, do not discriminate in choosing their victims, and my once healthy grandparents now require a higher level of care. And with that care, comes the need to make sure that we family caregivers have the information we need to help manage their care, which is why access to electronic health information is vitally important.

While my mom is the primary caregiver for my grandparents, as the only member of my family working in healthcare I have in recent years shared many of the decision-making responsibilities with her, from helping choose a Medicare Advantage Plan for my grandparents (and now my parents), to helping select the long-term care facility my grandparents now call their home.  Since this is not a role I ever envisioned for myself and therefore didn’t plan for, it has been an eye-opening experience into some of the highs and lows of our healthcare system, particularly how we handle end-of-life care, and how difficult it can often be to be a caregiver.

As I have learned, being a caregiver can be a challenging endeavor, particularly when you don’t live near the family member.  The primary lesson I learned in the last few months is that the last thing caregivers should have to think about is whether their loved one’s health information is available when and where it is needed. And it’s important to remember the important role of caregivers now, as part of National Family Caregivers Month.

Image of a family celebrating a wedding anniversary

Celebrating my grandparent’s 61st wedding anniversary, circa 2009

Far too often, on top of everything else a caregiver has to do, they have to work hard to gather critical health information from multiple care locations. In my experience, this often requires in-person trips to multiple care locations, getting printouts of records, lack of access to patient portals, many phone calls, and other barriers which can be very difficult, even in in today’s technology-based world.

AARP recently reported that caregivers have a high interest in the use of technology, but just seven percent are using technology regularly in their caregiving duties, citing barriers such as lack of awareness, cost, perceived complexity and time to find and learn about new technologies.  This data highlights the tremendous opportunity for innovation in health IT that can better address unmet caregiver needs. While my experience showed me that we have made progress, like being able to get hospital and test records sent electronically via secure email, there are a number of steps healthcare stakeholders can take to improve the caregiver’s experience and make their job easier.

First, we need electronic processes that are clear, easy to find, and easy to use that enable caregivers to share power of attorney documents electronically, rather than having to go in person to each provider office, hospital records office, etc.  Many health systems’ policies require a power of attorney be on file to get access to the full medical record, though HIPAA allows a healthcare provider to share or discuss health information with family, friends, or others. A healthcare power of attorney is a reasonable safeguard to make sure only people the patient would want to have access actually get access to the patient’s health information, but it should also be easy to share this document electronically, rather than driving to multiple locations.

Second, providers and health systems should evaluate their processes for giving caregivers access to a loved one’s healthcare information, including their portals, and consider giving each personal representative a unique, secure login to access the patient’s portal.  Often, the current processes don’t take into account situations where a caregiver is the primary individual who would need or use the access.  For example, many hospitals provide the patient with access to the hospital’s portal upon discharge.  But some elderly patients may not have an email address, and for others living in a facility, such as a nursing home, the family caregiver may not be present when the resident is discharged, so the email address cannot be provided.

While some providers are adopting new and innovative  ways to provide caregivers with access, more providers need to implement new processes to accommodate caregiver access.  Hospitals and doctors implementing these processes should clearly post this information on their website.  Likewise, in provider offices, caregivers may not be present at every visit, and providers should consider how best to give authorized caregivers electronic access to important health information.

Finally, ONC is laser focused on interoperability as one of our two key priorities.  As we think about supporting caregivers, our goal is to reach a place where the health information they need for a loved one’s care is available conveniently and electronically where and when it is needed.

Interoperable systems and access to electronic health data through third party apps and new technologies will also allow caregivers to have the real-time data they need to better manage, monitor, and improve the health and care of their loved ones outside of a clinical encounter.

We are focusing on four main targets to move interoperability forward to support this goal:

  • Technical: key standards across multiple areas (data structure, transport, formats, etc.) that enable caregivers to use their smartphone to access health information
  • Trust: underpinning “rules of the road” that establish trust and parameters between providers and caregivers
  • Financial: aligned incentives that promote exchange
  • Workforce: highly skilled healthcare staff who support necessary infrastructure and enable access for caregivers.

Much of our work to implement the 21st Century Cures Act directly supports progress on these targets.  As we move forward, we look forward to working across the industry to make it easier for caregivers to furnish support and care, so that one day caregivers won’t have to think about getting access to data and will be able to spend more quality time with the people who need their help.


  1. Caregiving in an Electronic Age - A2Z IT | Managed Services | IT support | Orlando, FL says:

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  2. Merle Bushkin says:

    Hi Genevieve,

    Sorry to learn about your grandparents. Serious illnesses are very hard to take whether you’re the patient or their care giver/loved one.

    Though you didn’t mention it, I suspect you felt a sense of urgency trying to get your grandparents’ records, and frustrated and angry when you couldn’t get them quickly. Why? Because you needed them “now” not several years hence!

    That’s why we urge ONC to support MedKaz®. It’s here today, provides total interoperability and aligns incentives today, and is flexible enough to meet tomorrow’s needs as well! Also, it works for everyone, even the 42% of people over 65 who don’t have smartphones!

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  4. Ryan says:

    Digital technology offers practical solutions for caregivers seeking to solve a problem, learn new skills and get support. This fact sheet offers an introduction to some of the tools currently available to help manage your caregiving responsibilities and other tasks. The world of technology changes quickly, so even more new devices, applications and websites will be available in the future to help you manage care.

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