Research Infrastructure

PERC empowers patients to ask questions about their health care concerns and actively participate in studies that will help answer them.

PERC encourages patients and families to be involved in studies while researchers simultaneously work with communities to address the real problems that affect the patients they serve. The goal of PERC is to have the patients and researchers remain connected to the community even after the research study has been completed.

In order for PERC to build partnerships with local, regional, and national patient communities and health care systems, conduct and expand research initiatives, and put forth new programs based on findings, PERC has an infrastructure that will ensure the program is successfully carried into the future.

PERC’s infrastructure has 4 Cores. A core is a resource of expertise that anyone can access to do research.

The Fours Cores are:

  1. Patient Engagement
  2. Study, Design, Analysis and Measurement
  3. Patient Data Network
  4. Dissemination/Implementation

These four cores serve as the framework to make sure the 3 projects are carried out properly.

Core 1: Patient Engagement: What do we study?

Core 1, which focuses on patient engagement, is responsible for recruiting and developing a patient advisor pool of over 300 advisors. These advisors will be recruited from a variety of sources including but not limited to community faith groups, community business groups, and community grass root groups. All advisors will be trained to participate in the research studies, while fine-tuning their active listening and effective communication skills. The goal of core 1 is to identify the pertinent questions that patients and caregivers have, and access how to address these questions in a clinical practice.

Core 2: Study Design and Methods: What study design should we use?

Core 2 is responsible for the study design and methods. This means Core 2 will carry out defining the study population, assist with study initiation as well as the follow up study. Core 2 will ensure that the study is monitored, organized and will follow the proper protocols to ensure the data that is being collected is concise and accurate.

Core 3: Patient Data Network: How do we carry our and govern the study?

Core 3 focuses on accessing the study design, website development and data implementation. This means that the goal of core 3 is to make sure the most important outcomes of the studies are measured, and that the data collected will be analyzed properly to have the best understanding of the patients’ contributions to the study.

Core 4: Dissemination and Implementation: How do we enable people to apply the study results?

Core 4 addresses the question of how to spread the knowledge of our findings with patients and providers to improve care. The dissemination and implementation core will be responsible for activities such as meeting with clinicians, developing public health relations, publishing manuscripts, and conferences.

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