Results Summary
What was the research about?
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.
What were the results?
The scale the research team developed worked well to measure patient-centeredness of input on research projects.
Using the scale, the research teams found that the input from CE Studio was more patient centered than the input from T2 Studio.
What did the research team do?
To measure how patient centered input is on research projects, the research team created the Person-Centeredness of Research Scale, made up of a set of questions. To create the scale, the team made a list of features that would make a project patient centered. Next, the team created questions to find out if projects showed these traits. The team then tested and revised the questions.
The research team assigned 20 research projects to one of two groups by chance. The project teams were from Vanderbilt University and Meharry Medical College in Nashville, Tennessee, and they wanted input on making their projects patient centered. Teams in the first group received input using CE Studio. Teams in the second group received input using T2 Studio. In both CE Studio and T2 Studio, people gave input through one- to two-hour discussion sessions.
To measure the patient-centeredness of input given in both groups, the research team used the new Person-Centeredness of Research Scale. The team compared the patient-centeredness of the input projects received in the CE Studio group with the T2 Studio group.
Two members of community organizations helped design and conduct the study.
What were the limits of the study?
This study looked at a small number of research projects. Results may differ with more projects. The research team looked only at if the input on research projects was patient centered. They didn’t look at other things that may make a project patient centered, such as if patients were on the project team.
How can people use the results?
Researchers could use CE Studio to get patient-centered input on research projects. They could also use the Person-Centeredness of Research Scale to measure how patient-centered input is on a research project.
Professional Abstract
Objective
(1) To develop a scale to measure the patient-centeredness of input on research projects; (2) 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)
Study Design
| Design Elements | Description |
|---|---|
| Design | Randomized controlled trial |
| Data Sources and Data Sets | Input from either CE Studio or T2 Studio on 20 research projects in the planning stage at Vanderbilt University and Meharry Medical College |
| Analytic Approach | Independent review of transcripts from CE Studio or T2 Studio sessions using Person-Centeredness of Research Scale |
| Outcomes | Patient-centeredness of input on research projects |
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.
Results
The Person-Centeredness of Research Scale showed a high degree of internal consistency reliability based on Cronbach’s alpha.
Scores from the Person-Centeredness of Research Scale were significantly higher for the CE Studio group (8.52) compared with the T2 Studio group (-5.67) (p<0.0001), indicating that input obtained from the patients and community members was more patient centered.
Limitations
This study included a small number of research projects at two sites; results might be different if the study included a larger number of research projects. The study did not assess patient and community-member engagement in the actual research project, which may also affect patient-centeredness.
Conclusions and Relevance
The Person-Centeredness of Research Scale functioned as intended to assess differences in the patient-centeredness of input on research projects. Researchers could use the scale to evaluate the patient-centeredness of such input on future research projects.
Community input in the development of research projects resulted in input on research plans that were more patient centered.
Future Research Needs
Future studies could investigate the performance of the scale. In addition, research could explore how methods of engagement other than CE Studio affect the patient-centeredness of research.
Final Research Report
View this project's final research report.
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Peer-Review Summary
Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also assesses how the project addressed PCORI’s Methodology Standards. During peer review, experts read a draft report of the research and provide comments about the report. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. These reviewers cannot have conflicts of interest with the study.
The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve descriptions of the conduct of the study or to clarify the connection between results and conclusions. Sometimes, awardees revise their draft reports twice or more to address all of the reviewers’ comments.
Peer reviewers commented, and the researchers made changes or provided responses. Those comments and responses included the following:
- Reviewers questioned the reasons for developing taxonomies for stakeholder engagement. The researchers responded that there are no existing taxonomies for how engagement impacts research, and this research fills a specific methodological gap identified in the 2013 PCORI Methodology Report.
- Reviewers asked about the purpose of the person centeredness of research scale and particularly the purpose of the summary score produced by the scale. The researchers explained that the scale could be used to compare the person centeredness of two research products, such as study abstracts. They acknowledged that at this point, the summary score for a specific research product is not meaningful without a comparator product.
- Reviewers questioned the plan to evaluate the best method to get person-centered input on a research project. The study’s comparison between the Translation Studio, involving researcher input, and the Community Engagement Studio, involving patient and community member input, seemed inappropriate to reviewers. The reviewers said that the two approaches should be considered complementary rather than alternative activities. The researchers explained that the purpose of the study was to assess the effectiveness of the Community Engagement Studio in obtaining person-centered input, compared to the Translation Studio.
- Reviewers asked the researchers to temper their conclusions about the impact of patient and stakeholder feedback on research. The researchers revised their limitations and conclusions sections to stipulate that the comparison of inputs in this study demonstrated that patient and stakeholder input was more person-centered than researcher input. It was beyond the scope of the study to determine how person-centered input impacted the research process.