Patient Advocacy Patient Story

Doing more: Patient advocacy and support in a Pandemic

I am very active patient partner both locally and nationally. I am a family advisor for Texas Children’s Hospital, where I lead an initiative called parent rounds (we round on the patients for nonclinical needs), run a support group for NICU moms, and participate on several safety and quality committees.

Although hospitals have had to make the tough decision to put in-person advisory efforts on hold during the COVID-19 pandemic, there are still ample opportunities to leverage the power of technology to continue to meet the needs of patients and their families. Our advisory councils are continuing to meet virtually while working closely with leadership to be creative in our individual and family engagement efforts. We are exploring the usage of iPads, social media groups and other ways to bring the support groups to the patients and families virtually.

I am extremely excited to be one of this year’s scholarship recipients. Now more than ever we need to continue to build the sense of community within our patient and family engagement world. Many patients are entering the hospital environments alone and do not have that family support and advocacy they need. It is crucial that as patient advocates we work together with our hospital systems to ensure that patient and family engagement is not lost in the abyss of this pandemic.

I not only know the benefit of continued advocacy and engagement during the pandemic through my work, but also on a personal level. I was recently hospitalized during the pandemic. I can honestly say I have never felt so alone and vulnerable in my life. As I was laying there in my hospital bed I began to think about others that were in the rooms around me and those that have this as their reality everyday as they enter our healthcare environments alone without support. It was in that moment I made a challenge to myself to do more to ensure that patients and families have the support they need to be successful. I challenge all of our leaders, advocates and partners to do the same.

How can you get started? First, ask yourself: what can I do with the resources I have? Start somewhere and do not hide behind the veil of the pandemic or other barriers. We all can make a difference if we work together. It is easy to sit in our safe spaces and point the finger identifying all the problems, however if we don’t work towards solutions nothing will change. We have the power of technology! Host a Zoom virtual support group, start a Facebook group, engage on social media or even just check in with your fellow advisors today with a simple text. Do your part and start somewhere. I am excited to be a part of this conference and I am fired up and ready to go!

Desiree Collins Bradley
Desiree Collins-Bradley is a resident of Fresno, Texas. Her passion is patient and family engagement in healthcare and ensuring that patient’s voices are always represented at all levels of shared decision making. She is a mother of three wonderful children. Her daughter was born with a genetic disorder Jarcho Levin Syndrome. It is extremely rare and often carries a very high mortality rate and grim prognosis. Her medical journey has inspired her to become an advocate not only for daughter, but in the medical community as a whole. She believes in the pillars of family centered care and it is her passion to spread the importance and awareness of them. She has become involved in several committees at the hospital, including the Newborn Center Family Advisory Committee, of which she was the Co-chair and one of the founding members. She is also a Family Advisor for the Vermont Oxford Network, which focuses on NICU improvement projects globally. She is also the Project Coordinator for Project DOCC Houston, a nonprofit organization focusing on the importance of partnerships between physicians and families of those taking care of a chronically ill or disabled family member. She is a National Faculty Member for TCPI through CMS. She has attended numerous conferences as a family advisor and presenting faculty member for physician organizations such as American College of Physicians, ACP, AAFP, American Academy of Family Physicians and SIDM, The Society to Improve Diagnosis in Medicine. Her goal is to spread the ideals of the importance of the patient voice not only being heard, but included in the decision making process. She also currently manages a very interactive patient network PPIC, Patient Partner Innovation Community. Her goal is to inspire other patients and caregivers to become activated in their healthcare communities. She is a strong advocate for patient populations at most social risk. She has worked on several SDOH, Social Determinants of Health initiatives with the National Quality Forum. Through their partnership she has participated in panel discussions at congressional briefings in Washington, DC.

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