“What Matters to You?” instead of “What’s the Matter with You?” -guest post, Heather Coats, PhD, APRN-BC

Is the integration of an individual’s narrative into the Electronic Health Record FEASIBLE to Improve Person-Centered Care? (CT Lin: I’m excited to welcome Guest Blogger: Heather Coats PhD)

Person-Centered Care, a buzz word to refocus our Western (US) healthcare system on the user of the system, the person who has a health need.  We as clinicians, use the word “patient” but they are a human, just like us the clinician. We all have past, present and future stories that make up “who we are” However, this whole self sometimes is seen as parts in our western medicine culture…the cancer patient in room 202, instead of Jon, the person…who is a grandpa, a dad, and businessman whose illness is impacting his ability to be all of these things.

In recent years, the shift in Western Medicine to incorporate the person’s experience has been moving upstream. The IHI (Institute for Health Improvement) “Person- and Family-Centered Care” domain–Putting the patient and the family at the heart of every decision and empowering them to be genuine partners in their care, goal is to develop “partnerships between clinicians and individuals where the values, needs, and preferences of the individual are honored; the best evidence is applied; and the shared goal is optimal functional health and quality of life”  http://www.ihi.org/Topics/PFCC/Pages/default.aspx

Since 2015, the IHI helped share the practice of asking the individual receiving health care:  a simple question…“What matters to you?” in addition to “What’s the matter?” This reframing of the clinician-person interaction orients the care being provided more to the whole person, to give a much different light to a plan of care that opens the door for opportunities to involve the person’s whole self. http://www.ihi.org/about/Documents/IHI_Timeline_2018.pdf.

Now, I do not want to diminish the physiological as an important component in the delivery of care. As clinicians, our expertise (life experiences, training) are grounded in knowledge of the physiological, but I would dare to ask, we are not the experts in the whole person who is sitting across from us. Second, when a person is facing an illness…cure of the illness may not be a reality, but healing of the self is still possible.

A recent NPR Morning Edition aired on their Morning Edition program (June 8, 2019): “Storytelling Helps Hospital Staff Discover the person within the Patient aired on June 8, 2019 on Morning Edition on National Public Radio.

https://www.npr.org/sections/health-shots/2019/06/08/729351842/storytelling-helps-hospital-staff-discover-the-person-within-the-patient

Person-centered narratives are one proposed way to have dedicated tools to shift to more person-centered care.  

An exemplar of this narrative shift, is the MyLife/MyStory program at the William S. Middleton Memorial Veterans Hospital in Madison, WI. https://www.youtube.com/watch?v=_Wy1aMXQCTk. This program has included over 2,000 person centered co-created narratives into the electronic health record since 2013. Their program has trained an additional 50 sites to implement programs similar to theirs. 

This is where my “story” comes in,  I had the pleasure to attend MyLife/MyStory  training back in 2015, which allowed me to think about this type of program could be implemented outside the VA, and have a program of research that tested person centered narratives interventions to improve communication between clinician and persons receiving healthcare. My NIH/NINR funded research focuses on the implementation of a person centered narrative intervention that co-creates a first person narrative that is approved by the person, then uploaded into the person’s electronic health record for their healthcare team to learn more about “What matters to them?”  The first phase of the program did prove to be feasible and acceptable by the individual- the person hospitalized for serious illness, their family, and their clinicians. Through this work, perhaps, there is just one more way to help shift Western healthcare to “truly” be person and family centered.

Heather Coats, PhD, APRN-BC
Assistant Professor of Research
Office of Research and Scholarship
University of Colorado, College of Nursing
Nurse Practitioner, University of Colorado Hospital Palliative Care Consult Service (PCCS), Department of Medicine, Division of General Internal Medicine, University of Colorado, School of Medicine

Author: CT Lin

CMIO, UCHealth (Colorado); Professor, University of Colorado School of Medicine

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