Gillette Children's is Committed to Family Engagement in Research
We believe in the power of collaboration in research. Gillette Children's is committed to Family Engagement in Research (FER), a collaborative, best-practice approach that equally values contributions from lived experience partners, clinicians, and researchers in all phases of the research process. Our commitment to FER builds on providing exceptional healthcare to our patients. By actively and equally engaging researchers, clinicians, and lived experience partners, we create groundbreaking and meaningful research that unites expertise, compassion, and real-life insights, increasing the quality and value of our studies.
Lived Experience Partners are Critical
Lived Experience Partners are individuals, or primary caregivers of the individual, who have a brain, bone or movement condition treated at Gillette Children's. Lived Experience is experience with special health care needs, most especially the day-to-day tasks that occur outside clinic or hospital walls. These tasks include, but are not limited to:
- Appointment scheduling & coordination
- Care-team management
- Daily caregiving
- Disability advocacy
- IEP guidance
- Home modification approvals and management
- Navigating school district, county, state and federal disability programs
- Medical insurance and assistance
- Support staff management
What People are Saying
“Our parent advisors are essential to all that we do. We have all learned so much over the last five years having them as a part of our clinic." -Tori Bahr, MD, MedPeds Complex Care
“Lived experience partners share experiences that are not always easy to hear but what we need to hear to improve.” -Gillette Children's Clinician
“The most important thing I’ve learned is that families can certainly have an impact in the design, implementation and quality assurance of how health care is delivered to their children and youth”
-Lived Experience Partner
LEPs provide critical expertise about ‘life outside the clinic walls’ to all facets of research, increasing impact. Some examples are:
- Idea generation/research question refinement and/or prioritization
- Define/develop research grant proposal and/or research protocol
- Review documents for recruitment/study materials and provide feedback
- Interpretation/contextualization of results
- Disseminate research findings
Additionally, any PCORI-funded grant currently requires the use of Lived Experience Partners. Many high-profile publications such as the NIH encourage, recommend, or require the use of Lived Experience or Patient Partners in the research projects they publish or feature.
The level of engagement, role and expectations for LEPs is guided by the principal investigator for the particular project. Engagement can range from attending meetings and very minimal involvement to being a decision-maker.
- Listener: Given Information
- Co-Thinker: Asked to give their opinion
- Advisor: Give (un)solicited advice
- Partner: Works as an equal partner
- Decision-Maker: Takes Initiative, (final) decisions
Lived Experience Partners (LEPs) can be engaged early in the research project to help co-create research questions and design the research project to be more meaningful to our population, but they can be added at anytime.
Examples: Perhaps the research team is having trouble getting patients to complete surveys? Engaging LEPs can help identify questions that are more meaningful and pertinent to the participants. Or, maybe researchers are having trouble recruiting participants for the research study? Engaging LEPs can help identify potential communication hurdles and co-develop a strategy for understanding the best times to approach participants and when they are most open to hearing about a research study. Perhaps a researcher would prefer focus group facilitation comes from someone who has experience with the condition vs being scientist-led? LEP-led focus groups can help the conversation be more approachable and allow participants to feel more comfortable.
Online training is required for all members of the team assuring Lived Experience Partners (LEP) to assure they are familiar with the research process and are informed partners. As part of Family Engagement Research, researchers and clinicians are trained on a new way of conducting research in collaboration with LEPs. Training is compensated and takes approximately 2 hours. Training examples include:
- PCORI’s Research Fundamentals Course and PORCCH (Patient-Oriented Research Curriculum in Child Health). Lived experience partners complete all modules of PCORI’s Research Fundamentals Course (https://www.pcori.org/engagement/research-fundamentals)
- PORCCH modules Research 101 Part 1 and Patient Engagement 101 Parts 1 and 2 (https://porcch.ca/modules/). Clinician and research team members complete PORCCH Patient Engagement 101 Parts 1 and 2
We are committed to compensating Lived Experience Partners for their time including time spent in training, meetings and other tasks related to the research project. Funding is typically built into the grant proposal process and is, in-fact encouraged and sometimes required by different funding sources. Alternately if external funding is not available, we are committed to funding these positions and the collaboration of LEPs in research. Lived Experience Partners will become a contracted Gillette Children's employee with access to relevant files and trainings for onboarding.
Become a Lived Experience Partner
Gillette Children's is offering an opportunity for individuals living with a health condition or their primary caregiver to be a part of one of the first pediatric FER programs in the US here at Gillette Children’s. Not only will you be a valued part of a research team you will be contributing to the relevance and impact of our work and ultimately help create even more beneficial outcomes for our patients.
If you are interested in learning more about becoming a Lived Experience Partner, complete our Lived Experience Partner Contact Info Form.
Tricia is the parent of a child with special health needs and an advocate for all parents of children and youth with special health needs and medical complexity. Ms. Brisbine holds a Master's degree in Counseling Psychology, and worked for several with Family Voices of MN and the F2F HIC. She currently serves as a consultant on the Complex Medical Care QI Team, as well as the Family Engagement in Research Blueprint Team, both at Gillette Children’s Specialty Healthcare. Ms. Brisbine also serves as a family/parent representative on the Maternal and Child Health Task Force (MN Department of Health) and the Waiver Reimagine Advisory Committee (MN Department of Human Services). She is passionate about improving the quality of life for families of children and youth with special health care needs across Minnesota. Tricia completed the AMCHP’s Family Leadership Scholar Program in 2013 and has since designed and led family leadership trainings throughout the state.
Haley is the Family Engagement in Research (FER) Coordinator at Gillette Children's Hospital in St. Paul, Minnesota. Prior to giving birth to her rare, medically complex son in 2017 (10Q26.3 terminal deletion), Haley had a 16-year long career in design and marketing for some of the world’s biggest brands. Her professional career came to a crashing halt when she found herself managing a team of 20+ doctors, specialists, therapists, case managers, personal care attendants (PCAs) as well as navigating county, state and federal disability programs. At Gillette, Haley's lived experience managing her son’s special health care needs along with her previous professional background give her a unique perspective to coordinate and advocate for other lived experience partners. Haley has a vested interest in helping design and facilitate meaningful co-creation of research initiatives that continue to create better outcomes for patients like her son.
Adenike developed a passion for advocating for diversity and inclusion in education to improve the quality of life for families and CYSHCN after the birth of her 25 week old son. As a licensed Social Worker with a BA in Psychology and a MA in Health Care and Human Services Administration, she consults on a plethora of projects utilizing both her professional and lived experience in community connecting, advocacy, DEI, leadership development and mental health supports. Nationally she served as Parent Advisor for the CoIIN to Advance Care for CMC and the American Academy of Pediatrics. She is a graduate of Partners in Policymaking, PACER Family Leadership Training and Family Voices of MN's CONNECTED Peer Support Program and served three terms on the MN Department of Education’s Special Education Advisory Panel. Currently, she is a member of the Complex Care Quality Improvement team and Family Engagement Research Partner at Gillette Children’s and NASHP’s Project Advisory Committee.
Megan has a passion for using research to find health solutions for adolescents with mental and physical disabilities. This passion brought me to Gillette Children's where she is a Clinical Research Coordinator for Health Services. Magan has 5 years of experience in acute pediatric rehabilitation settings and 3 years of experience working with international pediatric patients. Megan has knowledge in grant writing, designing and implementing public health programs on an international scale, and healthcare policies. Megan has been trained in the Project ECHO model to improve the standard of care and devices through evidence-based practices and has training in LEAN process improvement and fundamental training in working with Lived Experience Partners.
Jess is the mother of two children with complex medical needs and an advocate for families raising children with special health care needs. Jess holds a bachelors degree in nursing and works as a Registered Nurse in a rural community hospital. She has previously worked with Family Voices of Minnesota providing one to one peer support for parents and facilitating monthly support groups providing a safe space for parents to share their triumphs and challenges on their journey of raising a child with special healthcare needs. She currently serves as a family advisor on the Complex Care Quality Improvement Team and the Family Engagement in Research Team at Gillette Children’s. Jess has completed training with the Family Leadership Institute (2015-2016), Charting the LifeCourse (2021), ARC Advocacy Curriculum (2021) and PACER Center Family Leadership Training (2023)
Kari began her partnership with Gillette Children's as a preemie twin needing expert medical care, and still benefits from their services today. Kari has a Bachelor's degree in Developmental Psychology and a Master's Degree in Social Work. She has spent over 25 years working with children and families with unique health care needs, specializing in crisis intervention, educational support, positive psychology, and advocacy. Kari is thrilled to be part of creating a program that encourages other Gillette patients to share their valuable expertise.
Sandy holds a Master's Degree in Social Work, a PhD in Counseling Psychology and was a depression researcher before her daughter’s birth. Raising a child with special health care needs ignited her passion for improving the lives of families like hers. She uses her lived experience, insights shared by other parents, and training as a LEND Family Discipline Fellow to bring the family voice to her advocacy, education, and training efforts. Currently, she provides opportunities for developing professionals to learn from families, works with a team to share the stories of caregivers of children with medical complexity (CMC) with medical students and residents, is conducting research on the experience of caregivers of CMC, and is a member of the Family Engagement Research Blueprint Team at Gillette Children’s. She is a parent advisor on the WI Children’s Long-Term Support Council, Waisman Center’s Constituent Advisory Committee, and Gillette Children’s Parent Advisory Council.