Date: January 10, 2017

Topics:

Research <http://www.pcori.org//topic/research>,

Engagement Blogs

<http://www.pcori.org//topic/engagement-blogs>,

Guest Blogs <http://www.pcori.org//topic/guest-blogs>

The Importance of the PatientVoice

I was a shy child, but somewhere along the way I found my

voice. Perhaps it was because of the countless times my

parents told me to speak up for myself at school. I

eventually realized that if I used my voice in the right place

at the right time, people would value what I had to say. As I

approached high school, I found a voice that enabled me to

help others.

Blog

I remember

visiting my

grandfather in

the hospital after

he had heart

surgery. I was

anxious and

upset seeing him

on a ventilator,

unconscious, and

shaky. However, by the next day he was a whole new

person, sitting up, talking, and eating normally. Then,

another heart surgery patient was brought in to share the

room. She looked as my grandfather had—and her

daughter was distraught. Understanding how that felt, I let

her know that it was going to be OK. Indeed, the next day

her mom was doing better. My family later learned that this

recovery pattern was typical. I remember thinking that if

doctors would inform patients and families about what to

expect, it would make the hospital experience much easier.

That day, I began thinking about how the healthcare system

could do a better job of including patients and families. I

have spent many years in health care, first volunteering as a

candy striper at a local hospital, then managing group

homes and programs for intellectually disabled adults, and

eventually becoming a recreation therapist and patient

rights advocate.

Always passionate about patients, I never thought that one

day I might be on the other side—as an advocate for my

own child. And I never imagined that advocating for my

family would lead me to become involved with PCORI and

health research.

A Voice in Research

Fourteen

years ago,

my husband

and I

adopted a

baby girl.

After three

days in the

neonatal intensive care unit, she received a clean bill of

health. However, in the next few months, she had difficulty

feeding and digesting, and she later began missing

milestones of typical development, such as sitting up,

walking, and talking. She slowly accumulated many other

mysterious symptoms, such as low blood sugar,

gastrointestinal issues, and neurological symptoms.

After years of rehabilitation and medical management, she

has grown into a beautiful, intelligent, and strong teenage

girl, who is following in her mother’s advocacy footsteps.

But, although she is thriving, she is not without complex

medical needs. Her physicians, who are spread across four

hospital systems, have differing opinions regarding

diagnosis and care. We often feel at a crossroads, torn and

uncertain about treatment choices.

In our case, as in many others’, neither providers nor

patients have sufficient information to make satisfactory

shared decisions. To work together, providers and patients

need strong supporting evidence from robust patient-

centered research, like the work being funded by PCORI.

I became involved in research when the hospital council I

served on was asked to talk with researchers about the

frustrations and daily struggles that accompany

coordinating care for children with complex medical needs. I

was then asked to become a partner on a project to

improve healthcare systems by engaging caregivers to

collect important information about the most common

challenges for this vulnerable population. Working

alongside researchers and other parents through a PCORI

Engagement Award <http://www.pcori.org//research-

results/2014/franciscan-helps-families-connect-fhfc>, I was

able to use my voice in a way that could help my daughter

and other families.

Listening to a Community of Voices

The patient voice is so critical. Providers and healthcare

systems can best help patients in their times of need when

patients, as well as their caregivers, are fully included in

decision making. This is where the work being done by

PCORI is so critically important. PCORI recognizes that it

takes the whole community.

By asking researchers to engage with patients, caregivers,

and other healthcare stakeholders, PCORI helps establish

partnerships that provide evidenced-based care that’s

responsive to individual patients’ preferences, values, and

needs. By providing evidence to make informed decisions,

PCORI helps patients and caregivers navigate the ever-

changing sea of health care. PCORI values patient and

caregiver voices by including them meaningfully in research

so that others will be less burdened.

It is for all these reasons that I am proud to bring the

perspectives of patients and families to PCORI by serving as

a member of the Improving Healthcare Systems Advisory

Panel <http://www.pcori.org//get-involved/join-advisory-

panel/advisory-panel-improving-healthcare-systems> and as

a merit reviewer <http://www.pcori.org//get-

involved/become-merit-reviewer>. In the latter role, I

evaluate applications for research awards. On the advisory

panel, I provide input about the direction of research in one

of PCORI’s five national priorities

<http://www.pcori.org//research-results/research-we-

support/national-priorities-and-research-agenda>. In both

cases, I meet with diverse groups of patients, caregivers,

community leaders, providers, and insurers. I am glad to

use my experiences and voice to make a difference.

Recently having become a PCORI Ambassador

<http://www.pcori.org//get-involved/become-pcori-

ambassador>, I look forward to continuing to use my voice

to share the PCORI story to promote the importance of

patient-centered outcomes research.

The views expressed here are those of the author and not

necessarily those of PCORI.