Families as Allies recently launched a new virtual discussion series focused on a “patient-oriented” approach to how research—and ultimately services—work for children and families across Mississippi. In our first session, we began a conversation about patient-centered outcomes research and what it could look like to build a community around it here at home. Our goal is simple but important: to ensure that research reflects what families actually need, not just what systems assume is important.
At the center of the discussion was the Patient-Centered Outcomes Research Institute’s work. Their approach to research starts in a different place, by asking patients and families what outcomes matter most to them. As we shared during the session, that shift can be a real game-changer. Instead of focusing only on symptoms or clinical measures, research can prioritize what families say they need—like being able to work, succeed in school, or navigate daily life with more stability and support.
Our first session focused on one of PCORI’s foundational principles: representative involvement. That means making sure research includes the full range of people affected by an issue, not just a few voices or the people who are easiest to reach. It calls for intentionally building relationships with communities, sometimes over long periods, and for creating space where people with lived experience are true partners in the work. This is a shift in mindset as much as in process.
Participants brought thoughtful reflections to the conversation. Dr. Dustin Sarver, a clinical psychologist and researcher, highlighted the importance of asking community members what they need in order to contribute meaningfully—not simply inviting them to sit on a committee. Terrence Hibbert emphasized the need for stronger community leadership in research and services, noting that families have too often not been centered early enough in the process. These perspectives reinforce what we believe at Families as Allies: Families must be at the table from the very beginning.
As we continue this series, we are working to make this a grassroots effort to build understanding, relationships, and a shared commitment to doing this work with integrity. Mississippi has had limited opportunities to engage in this type of research in the past, which makes this moment especially important. We are already exploring ideas, including how this approach could apply to care coordination, but we know the direction of this work will ultimately be shaped by the people who choose to be part of it.
We invite you to join us for the next session! This series takes place on the fourth Tuesday of each month at noon and is fully virtual. Each session will focus on one foundational principle and what it could look like in practice in Mississippi. Families, caregivers, professionals, and community members are all welcome. Join us, bring a colleague or friend, and help us continue building a stronger, more family-driven approach to research and systems change.
