People with bipolar diagnoses fill out numerous surveys to help themselves, their clinicians, and researchers understand their health status. These surveys explore engagement in life activities and symptom control that include levels of depression and mania. But few of these surveys explore well-being in ways that consider what people actually do to help themselves live well.
Over the past year, the Prechter Program’s Bipolar Disorder Learning Community (BDLC) has developed an innovative approach to understand well-being. The BDLC launched in August 2022 as a multi-stakeholder team dedicated to improving care for people with bipolar disorder diagnoses. We are a group of about 15 researchers, clinicians, people with lived experience, family members, data scientists, and program managers that is co-led by Alexandra Vinson, Ph.D., and Claudia Diaz-Byrd, MSc.
Together we work to build a Learning Health System — a way of learning from research studies and everyday clinical care that helps us identify areas for improvement and make positive changes to the health care system. To build our Learning Health System, we use cycles of testing new ideas and analyzing their effectiveness to promote learning within the Prechter Program to improve care for people with bipolar disorder. Combining the strengths of our different backgrounds and life experiences is called “co-production.” We have seen co-production in action as we developed our new Wellness Measure, a survey completed by research participants and patients.
Our Learning Community used the power of co-production to develop better ways to measure well-being. As a team, we developed a measure that is strengths-based and individually-tailored. The Wellness Measure is strengths-based because it emphasizes things that people are doing that help them to live well, rather than focusing mainly on things that people with bipolar disorder have trouble doing, or ways that their symptoms are affecting them. It is individually-tailored because people who fill it out list their own priorities, activities, hobbies, and wellness behaviors, rather than selecting from a pre-set list decided by researchers. This is a powerful advantage because it helps people tap into their own insights about what it takes for them as unique individuals to live well. We hypothesize that over time this could help people track their own progress, raise their awareness about areas in which they are doing well or less well, and work with their therapist, psychiatrist, and
support system to course-correct if needed.
HOW DO WE KNOW THAT THIS NEW MEASURE IS ACTUALLY EFFECTIVE FOR MEASURING WELL-BEING?
We tapped into the power of our multi-stakeholder BDLC Core Team and our Prechter Longitudinal Study participants to scientifically validate the measure. Thanks to the 195 participants who filled out the Wellness Measure, we have been able to use statistics and analysis of open-ended responses to understand if and how the Wellness Measure works. The statistical analysis has been conducted by BDLC members Dr. Sarah Sperry, assistant professor of psychiatry and associate director of the Prechter Program, and her graduate student Audrey Stromberg, and the results were discussed at our BDLC meetings. The analysis of the open responses has been conducted by the whole BDLC using an innovative workshop format and consensus discussions led by Dr. Vinson and Ms. Diaz-Byrd. During the workshop, we categorized responses to questions that asked people what activities helped them live well or what they would need to change about their lives in order to live well. The workshop format allowed BDLC members to receive training in how to conduct the analysis and to contribute to developing the results and interpretation during the consensus discussions.
Overall, our approach to designing and analyzing the Wellness Measure has allowed us to combine rigorous methods of measure development and validation with the innovative multi-stakeholder approach of co-production. Our preliminary findings are encouraging — the initial results indicate that the Wellness Measure gives us scientifically valid insight into a person’s well-being and helps us understand what well-being looks like through the eyes of people with bipolar disorder. We would like to sincerely thank the participants in the Prechter Longitudinal Study who helped our efforts by participating in the Wellness Measure!
As we move forward, the BDLC Core Team will continue to work together to analyze, interpret, and report the results of this investigation of the Wellness Measure. We also hope to publish our results so that colleagues at other institutions can try it out in their own clinics.