Table 2.

Parent Motivations for Joining Our Practice-based Research Network Parent Panel*

Importance of research
“I think research into pediatric issues is very important, and I felt that if I could be a part of helping with that, that I should do so.”
“I think research is important so I am happy to help when I can!”
Altruistic reasons
“I like to assist in making things better in this world, and having more research assists in that.”
“Our family has been part of a research study for many years and anything I can do to help towards helping to improve the research community and families looking for help I'm glad to be a part of. I would want others to be willing to share so if my family were in need someone may have helped toward finding the answers we need.”
“I felt it was an opportunity to support work that could improve health care delivery, that I could fit within my existing life and schedule.”
“I have always been interested in helping to make care for my children, and all children, better in any way possible.”
“I am all for improving the health and well-being of those around me and for future generations. I have always loved science and I believe in it.”
“I enjoy providing my opinion:)! Plus, I've been lucky enough to receive great pediatric care for my child and I'd like to help make sure others also have that experience.”
“I'd like to help other parents!”
“Improving pediatric healthcare.”
“I believe it is important to participate in surveys to further research (in a non-invasive way) to benefit ALL children, including my own. I hope we can really help families with the research with cures and prevention. Being healthy is important. It is so easy to be in contact with people to do this with today's technology.”
Unique perspectives
“I have children of various ages and interested in what would be helpful to researchers as an 'old mom.'”
“I have 3 kids and I thought I could lend some good insight.”
“Interest in health disparities and things that make some children's immune systems so much stronger than others.”
Having a voice
“I value the ability to contribute to children's health research by having my voice heard as a parent. It is also a way of staying current with what is happening in kids' health community and learning new things that are gaining interest in the research community.”
“I enjoy having a voice when it comes to my child and their health. I have always said that you can't complain about something if you are not doing anything to make it better.”
“I recognize the importance of good communication between parents and medical staff and wanted to further my participation in this vital conversation in our community.”
“I like sharing my opinion and potentially helping with improving things, especially now that I have a child.”
“I feel that my feedback could be a valuable component of research.”
“Opportunity to provide input that could improve my children's quality of care.”
History of health care or research work
“I want to help the pediatric population in any way that I can. As a nurse, I value research in the positive outcomes it brings.”
“I work in the field of healthcare (behavioral health) and a strong connection between primary care and behavioral health services has always been a passion of mine. I thought this would be a good place to share my thoughts on that and other things.”
“I used to work in research for 10 years.”
“I work in a health field. I enjoy sharing experiences because as a parent and health provider I can see two perspectives for situations at times.”
“I work in behavioral health research and wanted to contribute to research as a participant.”
“I am an epidemiologist - medical research is an interest of mine.”
Previous healthcare experiences with children
“My son's condition and NICU experience.”
“I have a medically fragile child with a rare genetic disease that I also have.”
“My family consumes a lot of health care services, and we see a need for the system to improve.”
  • * Survey question: What made you interested in joining our Parent Panel?

  • NICU, Neonatal Intensive Care Unit.