Do you think patients (or, in the case of children, their families) are the best people to decide the health outcomes that matter the most to them? We at Families as Allies do, too.
Do you think patients, people who work with patients and medical researchers should work together to compare which types of treatment lead to the outcomes that matter most to patients? Again, we do, too.
Families as Allies is working with the University of Mississippi Medical Center, Unbiased Science and many of you to develop a patient-centered research community. This group will learn how to conduct research together to determine whether the treatments the medical (including mental health) system offers lead to the outcomes patients actually want.
We urge families, people with medical conditions, people who treat medical conditions and people who research medical conditions to join us. If you are a patient or family member who is hesitant to join us because you think you don’t know anything about research—guess what? You already know the most important thing. You know the outcomes that matter to you. That is the guiding force of this work. That’s all you need to know, and this group needs your expertise.
The Patient-Centered Outcomes Research Institute (PCORI) developed a set of Foundational Expectations for Partnerships in Research, comprising six building blocks that support active partnerships among researchers, patients, and other partners to foster an engaged research community. This month, we begin a monthly series of virtual discussions to learn about PCORI’s Foundational Expectations and develop a patient-centered outcome research community right here in Mississippi.
As a community, we will use the expectations to:
- support discussions and plans for partnership among patients, families, researchers, providers, and other team members;
- help all partners understand their roles and engagement on projects;
- anticipate and address potential challenges with engagement;
- build on team members’ strengths so they can plan, conduct and disseminate any research projects the community develops.
Our first virtual discussion is on Tuesday at noon and will last 30 – 45 minutes. We encourage anyone who is interested to join us. Again, we especially encourage people with medical conditions, families who care for them, researchers, providers of medical (including mental health) care, payors of medical care and policy makers to attend. Registration is required. Everyone is welcome. This month, we will discuss the expectation of representative Involvement, which helps research communities:
- ensure the research is relevant to and addresses the needs of those most affected by the topic;
- incorporate patient and other partner perspectives in project decisions;
- create a broader representation of relevant perspectives by including a range of patients or communities most affected by the area of focus, its interventions, and its outcomes.
These discussions will take place on the fourth Tuesday of every month at noon. You can attend any or all of them. These are the topics we will learn about as a community:
- March 24: Representative Involvement
- April 28: Early and Ongoing Engagement
- May 26: Dedicated Funds for Engagement and Partner Compensation
- June 23: Building Capacity to Work as a Team
- July 28: Meaningful Inclusion of Partners in Decision Making
- August 25: Ongoing Review and Assessment of Engagement
We look forward to seeing you next Tuesday, March 24 at noon! Don’t forget to register.
