Why the $30 Billion Electronic Health Record Industry Fails Family Caregivers
By: Jean Ross
Tags: Healthcare Technology, Caregivers, Healthcare, Electronic Health Record, Baby Boomers

Why the $30 Billion Electronic Health Record Industry Fails Family Caregivers

Confused by who is in charge of keeping your health records? Don’t be fooled into thinking your patient portal is doing the job. Now more than ever families need to think about how they can take back ownership of their health information.

The Problem: Electronic Health Records Focus on the Needs of the Provider First

No one understands this more than the 44 million Americans who find themselves navigating healthcare on behalf of someone else. As doctors and nurses type and click more and more into computers and devices, the mental work of family caregiving seems to only increase. Caregivers are overwhelmed and exhausted with keeping track, questioning, calling and researching. Not only do they fill the information gaps in healthcare, but they are shouldering the physical labor and financial responsibility that comes with their role. AARP’s September 2020 article had the intention to help family caregivers understand the health system better. However, the comments left by caregivers questioned why AARP did not advocate for the system to try to understand them.

The truth is the electronic health records (EHRs) of the system are designed for the highest users; those health professionals interacting with it daily. There’s even a term for it: provider-centric systems. Improvements to these systems will always address the providers needs over yours or mine simply because they are the daily user of these products. Patient portals often feel like an afterthought slapped on EHR companies at the behest of patient advocacy groups and government regulatory bodies. This is the reason we, the consumers of health services, need to own the process and solution of how our health story is documented.

Providers are Frustrated with the Current Situation, Too

Even more telling is the growing frustration of doctors and nurses as they, too, struggle with getting the right information at the right time to do their best work.

“Sorting through large amounts of information and finding the nuggets that apply to a particular patient’s situation is something that computers ought to be good at. But we still have problems with knowing what data is important and what is the right treatment and prevention plan for each patient.” — Harvard Business Review It’s Time for a New Kind of Electronic Health Record

…and this is only the tip of the iceberg. By 2030, older adults will outnumber children for the first time in U.S. history at a time when care is becoming more complex and data collection is only expanding. Put flatly, the sheer volume of information will cause health professionals to rely even more on family caregivers to provide the summarized health history and goals of care.

The Solution: Software Making Families the Most Important User

Jean Ross, RN attends an appointment with a client.

As a nurse who has worked in the system, much of this revelation came to me after I left my job in critical care. I started a small business focused on helping older adults and their families navigate the health system. I learned how hard a family caregiver’s job is being an advocate outside of the system where all the information is stored. To be effective for these families, I had to teach myself to quickly understand what’s changing, who needs to be involved to help, and where is the the data and information to support the story.

With a new family, we would start by consolidating the health visits over the past three years and pull together what scraps of data we could find. This act of pulling together a variety of patient portals, claims data, medications, and oral history would alert us to patterns and trends and help us ask better questions on behalf of the family. Moving forward, we made sure a nurse or family member attended each future health visit. We found the reasons behind medications, referrals, labs, and imaging orders happened in the verbal exchanges between provider and patient, which were lost the moment we stepped out of the office. These health care events and the information gained surrounding them are where the real impact was garnered. That gave us the ability to catch the near misses and help guide care for our families around what mattered most to the individual.

While I would love nothing more than nurses to own this solution in our communities, the hard reality is there is not enough of us to help at the level families need. We know families are already spending hours bridging the information gap happening so what can we do to help them today? The solution, I believe, is software that is able to take our health and appointment history to connect and guide families through the health system. There is a synergy to be gained when you meet people at the places they already interact and overlay a system watching over them. You have the potential to enhance the entire experience by creating software where families are the most valuable user of the system.