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The Future of Patient Engagement: A Look Ahead For Caregivers

By Cindy Munn, Chief Executive Officer (@CindyMunnCEO)

You’ve heard about it, you’ve read about it and you’ve felt it coming for a long time. It’s been a buzz phrase and a trending topic for several years, but at long last, patient engagement is taking center stage.

With EHRs and patient portals literally at our fingertips, we’re discovering that we have round-the-clock access to our health information, and we’re learning how to use it to manage and improve our health. We’re learning, too, that while these techno-tools facilitate patient engagement, our personal participation via action and behavior is the key.

As a professional, I’ve been looking forward to the rise of patient engagement since 2010 when our state received federal grant funds to establish an REC and a statewide HIE. But as a wife, mother and working woman, I’ve been waiting much longer for this moment, and based on my personal experiences, I have my own special predictions for the future of patient engagement.

Like many women, I learned to juggle my health care needs along with those of my husband and my two sons. For the past 20 years or so, patient engagement for me has meant scribbling physician appointment in datebooks, waiting at the pharmacy, second-guessing the name of a medication or the timing of a shot, trying to remember annual exams, interpreting messages from the doctor via the office staff and similar health care scenarios. No online scheduling, no email appointment reminders, no e-prescribing, no secure text messaging. Access to today’s health IT tools could’ve made the balancing act of this wife and mother less stressful and more effective.

But then the balancing act became even more difficult with the addition of a new role in my life: caregiver.

My mother fell seriously ill, and my two sisters and I became double-duty caregivers, living in different cities. We were now officially part of the nation’s growing Sandwich Generation, caring and advocating for our mother while balancing our own family and work responsibilities.

My mother’s health and quality of life slowly eroded over the course of three years.

Because of this, my sisters and I had to make decisions regarding her ongoing medical care as well as those related to end-of-life care. Should she receive treatment at home or in a health care facility? If a facility was the appropriate place, where would it be located? Should her antibiotic regimen be continued? What about resuscitation efforts? 

These were a few of the difficult choices we had to consider via phone calls and in-person visits. Tools like patient portals, secure electronic messaging and mobile apps would’ve been invaluable aids to connect us with my mother’s providers, her medical records and with each other.

Without a doubt, my personal experience has influenced my perspective regarding the interplay between patients, caregivers, providers and health IT, and what I see happening now gives me great hope. Gazing into my crystal ball, I foresee a bright future for caregiver engagement because it plays a play a critical role in improving patient engagement. 

For multigenerational caregivers, I predict that user-friendly, health IT tools will become so common that their use is second nature, especially as the tech-savvy youth of today turn into the health care consumers and caregivers of tomorrow.

I predict that consumer-focused patient engagement efforts – such as those underway in Louisiana - will increasingly focus on our nation’s growing caregiver population. The ability of health IT tools to assist caregivers in care coordination is simply too great to ignore, and I anticipate greater collaboration among health care providers, organizations and state and federal agencies in driving health IT education and awareness among caregiver populations.

And finally, I predict that the growing caregiver population will yield an increasing demand for caregiver-friendly policies, resources and supports, and subsequently, changes and improvements in the technology we are building today.   

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