DOI: 10.3886/icpsr39475.v1
title: Improving Patient Engagement and Understanding Its Impact on Research through Community Review Boards [Methods Study], Nashville, Tennessee, 2013-2018
title: Version 1

description: Currently many researchers get input on their research projects from other researchers. But researchers want their work to be more patient centered, or relevant to patients' preferences, needs, and values. To do this, researchers need a way to measure how patient centered a research project is. They also need ways to get input from patients and community members on research projects.
In this study, the research team created a scale with a set of questions to measure how patient centered input is on research projects. The team tested the scale to be sure it measured patient-centeredness reliably and accurately.
Then the research team compared two ways researchers could get input on their projects:

Community Engagement Studio, or CE Studio, brings together patients and community members. 
Translational Studio, or T2 Studio, brings together researchers. 

The team wanted to learn if there were differences in how patient centered input was from CE Studio and T2 Studio.
description: To develop evidence on the impact of stakeholder engagement on research. The study aims were the following:

To develop a scale to measure the patient-centeredness of input on research projects; 
To use this scale to compare the effectiveness of two methods for obtaining input on research projects--the Community Engagement Studio (CE Studio) and the Translational Studio (T2 Studio)
description: Researchers first created and validated a seven-item Person-Centeredness of Research Scale to measure the level of patient-centeredness of input on a research project. People can use the scale to indicate whether they agree or disagree that input on a research project integrates patient interests and needs. To create the scale, researchers generated items and evaluated items previously identified to assess patient-centeredness. Researchers pilot tested the scale and then assessed its validity and reliability.
Next, researchers used the scale in a randomized controlled trial that compared input on the design of research projects from community members versus researchers. Researchers randomly assigned 20 research projects at Vanderbilt University and Meharry Medical College in Nashville, Tennessee, to one of two groups. In one group, project teams used CE Studio, obtaining direct input from patients and community members. In the other group, project teams used T2 Studio, collecting input from fellow researchers. In both CE Studio and T2 Studio, participants gave input through one- to two-hour discussion sessions. A neutral community facilitator moderated the discussions.
Researchers recorded and transcribed sessions for both groups. Then two independent reviewers scored each transcript using the Person-Centeredness of Research Scale. Researchers compared the patient-centeredness scores on the input collected from the CE Studio versus the T2 Studio groups.
Two members of community organizations helped design and conduct the study.
description: random sampling
description: Datasets: 
DS1: Improving Patient Engagement and Understanding Its Impact on Research through Community Review Boards [Methods Study], Nashville, Tennessee, 2013-2018
description: Researchers from Vanderbilt University and Meharry Medical College in Nashville, Tennessee..