BackgroundThere is increasing interest in actively involving patients in the process of medical research to help ensure research is relevant and important to both researchers and people affected by the disease under study. This project examined the recently formed Vasculitis Patient-Powered Research Network (VPPRN), a rare disease research network, to better understand what investigators and patients learned from working on research teams together.MethodsQualitative interviews were conducted by phone with patients, physician/PhD-investigators, and study managers/staff who participated in the network. The question guiding the interviews and observational analysis was: “What have investigators and patients learned about working together while working on VPPRN teams?” Interview transcripts were analyzed in combination with observations from multiple in-person and telephone meetings.ResultsTranscripts and notes were reviewed and coded from 22 interviews conducted among 13 patient-partners, 5 study managers/staff, and 4 MD or PhD-investigators, and 6 in-person and 42 telephone/web-conference meetings. Patient-partners and investigators characterized their working relationships with one another, what they learned from their collaborations, and provided recommendations for future teams of patient-partners and investigators. Major themes included the great benefits of communicating about activities, being open to listening to each group member, and the importance of setting reasonable expectations.ConclusionsDirect engagement in research design and development by patient-partners and co-learning between investigators and patient-partners can result in a positive and productive working relationship for all members of a medical research team. This bi-directional engagement directly benefits and impacts research design, participant recruitment to studies, and study subject retention.

Moral injury (MI) is gaining traction within the Department of Veterans Affairs (VA) as an essential construct for understanding an important dimension of suffering experienced by U.S. combat-deployed Veterans. A VA chaplain and a psychologist at the Corporal Michael J. Crescenz VA Medical Center in Philadelphia co-facilitate a 12-week Moral Injury Group (MIG) to provide education about MI, the collective responsibility for the consequences of warfare, and related topics. A Community Ceremony in the VA chapel, immediately following Week 10, brings together VA staff, family, and friends of MIG Veterans as well as the wider society. MIG Veterans define MI and deliver a personal testimony about their MI and its effects. As Veterans’ burdens are shared by a community made more conscious of the realities of warfare, Veterans and civilians reconcile and Veteran identity shifts from that of a disabled patient to that of an adaptive leader and “prophet.” Data on the MIG has thus far been collected for purposes of quality improvement and measurement-based care. We report outcomes, through a case study of a MIG Veteran who shows decreases in suicidality, religious struggles, and depression, along with increases in posttraumatic growth, self-compassion, and life functioning. We also discuss plans for future research and development.

The search for ways to cut health care costs in organizations has rarely considered the direct relationship between organizational variables and health. This article hypothesizes that health and illness within a particular organization may be related to the social dynamics of the work setting. Data was gathered from a survey of a corporation with 13,000 employees who work in 16 organizations. An index of reported health symptoms was correlated with scales developed from questions related to organizational issues. Using stepwise multiple regression, 20% of the variance of the aggregate health symptoms was accounted for by three organizational scales (organization-person balance, managerial treatment, and discrimination) after controlling for demographic variables. A second analysis, which focused on the collective dynamics of the 16 organizations, supported the findings of the first analysis. This study found that issues of support, balance, change, and inequity are crucial factors in fostering a healthy work environment.

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