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Research Literacy: Empowering Patients as Research Team Members

Patients/citizen leaders need (sometimes substantial) support in joining PCORnet activities, and we don't have the tools or resources to offer them what they need. We need to provide assistance which could include any of the following: 1) various "on ramps" based on the patient/citizen leaders' self-assessment of their needs that can be accomplished through training (virtual or in person); 2) information about adult learning styles and what principles and activities PCORnet investigators need to offer to provide a welcoming, open and supportive transition onto the CDRN committees, activities, etc.; 3) information - designed by patient/citizen leader partners - about the cycle process and principles of capital "R" research, using graphic facilitated drawings, Youtube-like, short videos, vignettes, plain language glossaries and other non-technical but content-rich resources. Really making sure these kinds of products are health literacy/plain language appropriate is critical as well; 4) guidance on the spontaneously emerging materials being designed, developed, or revised across PCORnet to be a) more efficient through sharing and b) identify best quality and most meaningful materials currently available; 5) ways for those most vulnerable to being left out of the process - homebound, homeless, non-English speaking, low-income, low literacy, and others - with ways to join in the engagement process. All of this, above all, without treating or assuming that patients/citizen leaders are, in their words, "stupid." The clear message from ADVANCE PEP is that each person's life experience provides them am expertise that we should value, and at the same time, not assume really anything about whether and how they need to adjust/learn to participate fully in a CDRN network.


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