Patient Advocacy, Lived-Experience & Research
Although Momcology is mostly known for being a caregiver support organization, we are also a highly effective Patient Advocacy Organization. In fact, we are a Community-Based Organization (CBO) and a Patient Advocacy Organization (PAO). Our community-building structure puts us in an impactful position to facilitate engagement and enhance many types of research through the power of a connected community of patient advocates. When you join Momcology and fill out our membership application, you are given the option to become part of our Caregiver Lived-Experience Repository where you may be matched to studies you are likely to be eligible to participate in. This is a service we offer to pediatric cancer researchers and our families who are interested in sharing their experiences to advance care for families facing childhood cancer through Community-Based Participatory Research (CBPR).
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Community Based Organization
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Patient Advocacy Organization
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Lived-Experience
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CBPR
Community Based Organization (CBO)
Refers to organizations aimed at making desired improvements to a community's social health, well-being, and overall functioning. Community Based Organizations occur in geographically, psychosocially, culturally, and digitally bounded communities.
It is a commonly used model for organizing people within community projects, organizations, voluntary associations, localities, and social networks, which may operate as ways to mobilize around geography, shared experience, interest, need, and/or concern.
Patient Advocacy Organization (PAO)
Patient advocacy groups are organizations that are set up to represent and support patients and their families living with a specific condition. They are one of the few outlets that can be turned to for credible information, understanding and support.
Patient Advocacy Organizations advocate for their community by hosting family conferences, leading research projects, launching awareness campaigns and recommending treatment for approval to regulatory bodies.
Lived-Experience
In research, lived-experience refers to the first-hand involvement or direct experiences and choices of a given person, and the knowledge that they gain from it, as opposed to the knowledge a given person gains from second-hand sources. Lived experience refers to the unique insights and perspectives gained through personal encounters with health conditions, treatments, or the healthcare system. Lived experience doesn’t just focus on a patient’s clinical experiences but incorporates individuals’ thoughts, emotions, challenges, coping mechanisms and overall journey as they navigate their health-related experiences.
Community-Based Participatory Research (CBPR)
CBPR is a collaborative and equitable approach to research that is carried out in partnership between researchers and the community. Both researchers and the community have an equal share of power, decision-making, and responsibility for the research being done.
A CBPR approach aims to increase knowledge and understanding about particular issues, and then integrate the new knowledge into interventions, programs, or policies that benefit a community.
How Momcology Connects You to Patient Engaged Research
Opt-in to research and patient advocacy outreach on your membership application or annual profile update. This will qualify you to be matched to studies we are involved with. This is voluntary and not required to be part of Momcology.
Research requests go through a significant review process with Momcology including a community-based research partnership agreement to engage the community in every aspect of the study through Momcology. This process ultimately benefits the community which is what research should do.
Momcology will directly facilitate the outreach and opportunity for you to share your experiences through research studies via email or text if you match the defined eligibility criteria. Participation is optional. Your personal information is never shared.
“A fundamental premise of community-engaged research is that community-based organizations have credible, legitimate, and intimate understandings of the concerns, values and activities of their constituents and communities. Oftentimes, organizations are the places individuals share experiences and develop the relationships that define a community.”
FAQs Research Engagement
Momcology and the University of Minnesota Medical School have been keeping your records safe on a HIPAA compliant platform called REDCap. REDCap is used for most academic-based research surveys.
No. Momcology does not share your personal information with any of our research partners. We will contact you with the opportunity to participate. Whether or not you choose to share your email or other personal information on the research survey is up to you and your discretion.
Momcology will contact you when you match the elgibility criteria of a project that we have decided to partner on. How often we reach out to you depends on the which studies we are able to facilitate. Typically, we can not take on more than a handful of projects per year.
Results may be shared back on our bi-montly newsletter, on a community zoom with the research team, on social media and on our website. Please visit the publication and presentation tab on our menu to see what we have already accomplished together.
All studies that Momcology distributes are IRB approved by an academic institution. The coverpage of the study will have the contact information of the primary study investigators or an official email for the study. Additionally, you can also reach out to us directly at info@momcology.org and we will be able to contact the study team for you.
No problem and we understand completely. Please request a member profile update and we will be able to change your status so that you no longer are matched toreceive research opportunities from Momcology. If you change your mind, please simply contact us again and we will be able to restore your status.
Momcology Profile Updates
When you joined Momcology, you filled out a New Membership Application. This is now your Momcology profile. If you move, change your email address, or have a change in your child’s treatment status, you can request to update your profile to make sure you are current to be matched to research opportunities as well as other Momcology programs and events. We will also ask you to review your profile and make any updates annually in the Spring.
