IntroductionAmbulatory practices that actively partner with patients and families in quality improvement (QI) report benefits such as better patient/family interactions with physicians and staff, and patient empowerment. However, creating effective patient/family partnerships for ambulatory care improvement is not yet routine. The objective of this paper is to provide practices with concrete evidence about meaningfully involving patients and families in QI activities.MethodsReview of literature published from 2000–2015 and a focus group conducted in 2014 with practice advisors.ResultsThirty articles discussed 26 studies or examples of patient/family partnerships in ambulatory care QI. Patient and family partnership mechanisms included QI committees and advisory councils. Facilitators included process transparency, mechanisms for acting on patient/family input, and compensation. Challenges for practices included uncertainty about how best to involve patients and families in QI. Several studies found that patient/family partnership was a catalyst for improvement and reported that partnerships resulted in process improvements. Focus group results were concordant.ConclusionThis paper describes emergent mechanisms and processes that ambulatory care practices use to partner with patients and families in QI including outcomes, facilitators, and challenges.FundingGordon and Betty Moore Foundation.Electronic supplementary materialThe online version of this article (doi:10.1007/s12325-016-0364-z) contains supplementary material, which is available to authorized users.
Objectives Gestational Diabetes Mellitus (GDM) affects hundreds of thousands of women each year. Many require medications to manage their blood glucose levels. Only insulin is approved by the U.S. Food and Drug Administration for use in pregnancy. While other medications can be used, their safety remains controversial. Few studies have examined women's lived experience of using insulin for GDM. Our objective in this study was to foreground the voices of women speaking about their treatment experience. Methods We conducted two focus groups including 16 women treated for GDM with medications, primarily insulin. Topics included women's experiences with GDM diagnosis and treatment including concerns about risks and benefits of treatments. Transcripts were analyzed using an inductive coding approach. Results Many women had negative experiences with insulin use, such as feeling that they had no voice in treatment decisions, and received inadequate information about insulin, including about the impact it would have on their daily lives. Many continued to have difficulty managing their blood sugar once on insulin, and they worried about the short term and long term health effects of insulin on themselves and their babies. They wanted more information about non-insulin treatment options as well as more social support. Conclusion In our sample of women with GDM, insulin treatment resulted in negative experiences with emotional and experiential impacts lasting beyond pregnancy. There is a need for more research on other medications for GDM, so that women can have access to more treatment options and better information to guide their choices.
Health benefits to relatives of people at known genetic risk for hereditary cancer syndromes is key to realizing the promise of precision medicine. We conducted a qualitative study to design a patient- and family-centered program for direct contact of relatives to recommend cascade genetic testing. We conducted two rounds of data collection using focus groups followed by individual interviews with patients with HBOC or Lynch syndrome and a separate sample of people with a family history of hereditary cancers. Results indicate that U.S.-based health system-led direct contact of relatives is acceptable to patients and families, should take a programmatic approach, include consent of relatives before proband testing, complement to existing patient-mediated disclosure, and allow for relative control of information. Our findings suggest a set of requirements for U.S.-based direct contact programs that could ultimately benefit more relatives than current approaches.
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