Philadelphia University + Thomas Jefferson University

Participants &
Community Members Info

For a long time, researchers have measured what they think is important to patients instead of asking patients directly.

Currently, interviews and focus groups are two ways that researchers learn about patient perspectives and ideas. However, these can take a lot of time. They also rely on the researcher to interpret the end results, and the patient voice may get lost or misrepresented.

This study will explore if there is a better way to learn what matters to patients.

Overview of Our Study

In this study, we are comparing a brainstorming process called concept mapping with one-on-one interviews. We will engage patients with diabetes to learn about what matters most to them in their diabetes treatment. We will do one-on-one interviews with one set of patients and concept mapping with another set of patients. We will compare the process of the two methods (such as how much time the methods take for both patients and researchers) and the results we get from the two methods.

We have designed this project through collaboration with our Patient Advocates and Key Stakeholders Advisory Board (PAKSAB). PAKSAB members are part of our research team. The PAKSAB is helping us to make sure we ask questions that are important to patients, and that we design the project to be relevant to patients.

The Patient-Centered Outcomes Research Institute (PCORI) is funding this study (Award ME-1503-28476). Thomas Jefferson University’s Institutional Review Board (IRB) has approved the study protocol (15G.667). If you participated in the study and have questions about the study you may contact Dr. Kristin Rising (215-503-5507). For questions about your rights as a research participant, you may contact Thomas Jefferson University’s Institutional Review Board (215-503-8966).

Study Design

VOICe Circle

The circle shown here represents the different stages of health or sickness that people may experience.  We realize that people may have different priorities and preferences depending on their current stage of health.  For both interviews and concept mapping, we will recruit patients with diabetes from three distinct stages on this circle to learn what diabetes outcomes are important to them:

  1. During an emergency department visit (moderately sick/emergent)
  2. After a recent hospital stay (acute/post-acute)
  3. During a routine primary care visit (baseline/little sick)

First we will talk with patients to identify their own patient-important outcomes for managing their chronic conditions. For one group of patients, we will do this with interviews. For another group of patients, we will do this with concept mapping (our Frequently Asked Questions page has more information on concept mapping). We will then compare both the process and the results of the two methods (interviews and concept mapping). This will include looking at how much time is involved for participants and researchers, how expensive it is to perform each method, and whether the results from the two methods are similar.

Timeline

We started this project on January 1, 2016 and will finish it by December 31, 2018. Our timeline for this project is:

Year 1: Conduct 75% of interviews; begin interview analysis

Year 2: Complete interviews and interview analysis; conduct concept mapping sessions

Year 3: Compare the two methods; share results

How Will this Study Help Patients?

We hope that our study will help guide future researchers and clinical providers in how to best talk with patients about their priorities and preferences.   As we talk with more than 150 patients with diabetes over the course of our study, we will also learn what outcomes are important to individuals who are living with diabetes. This information will be widely shared with clinicians and diabetes researchers throughout the country.

We will share our findings with researchers at conferences, in medical journal articles, and the PCORI website. We will work with our patient advisory board to ensure that we share information that is important and understandable to patients. We will post study updates and a summary of our findings on this site so that participants and community members can learn about our results. We will also share our results with patients and community members in other ways, such as newspaper articles, posts in online patient advocacy groups, and local community presentations.