Journal of Patient-Centered Research and Reviews (JPCRR) is an open access, peer-reviewed medical journal focused on disseminating scholarly works devoted to improving patient-centered care practices, health outcomes, and the patient experience.
Background
This article describes the benefits of patient‐driven research in the field of head and neck oncology, reviews lessons learned from establishing partnerships with patients and caregivers, and serves as a model for further patient‐driven research endeavors.
Methods
Head and neck cancer survivors underwent training including that of effective communication and the basics of research methodology. They then drove the agendas for monthly meetings that included a multidisciplinary team of providers, facilitated by a physician champion (S.S.C.).
Results
The advisors reported concrete areas for improvement of the clinical flow, including the formation of a dental oncology clinic and a post‐treatment survivorship clinic. They also refined research topics of interest, such as treatment regret. The advisors have also driven efforts to increase public awareness and have participated in cancer symposiums and local presentations.
Conclusion
Patient‐driven research improves the relevance and implementation of head and neck oncology research and clinical processes.
These findings about perceptions, beliefs, and attitudes of women having undergone hysterectomy could support health care providers deliver patient-centered care. These results informed data collection for a prospective longitudinal cohort study that is now underway. The data suggest a need for increased education and empowerment in the decision making process, while expanding on information given for post-operative expectations and somatic changes that occur post-hysterectomy.
The possible causal role of the environment in health disparities is not well understood, even though it has been a national priority for many years. Progress to investigate the relationship between genetics, environmental exposures, and health outcomes has been hampered by the lack of analytical tools to quantify the combined or cumulative effect of multiple chemical and non-chemical stressors on gene expression. The studies cited here provide a strong rationale for using epigenomic analysis to assess cumulative risk from multiple environmental exposures over the life course. The environment-specific Bimprints^on the genome, coupled with transcriptomics and metabolomics, can be used to advance our understanding of the relationship between neighborhood disadvantage and health disparities.
Objective-Among teens with asthma, challenges of disease management may be greater in those with a body mass index (BMI) >85th percentile compared to youth within the parameters for normal weight-for-age. This mixed-methods study assessed teens' awareness of the link between weight and asthma management, and perspectives on how medical providers might open a discussion about managing weight.Method-Teens aged 13-18, having BMI >85 percentile and chronic asthma, identified using health system databases and a staff email message board, were invited to complete a semistructured, in-depth phone interview. Interviews were audio taped, transcribed, and qualitatively analyzed, using the Framework Method. Responses were summarized and themes identified. Descriptive summaries were generated for a 16-item survey of weight conversation starters.Results-Of 35 teens interviewed, 24 (69%) were girls, 11 (31%) boys, 20 (63%) AfricanAmerican. All teens reported having "the weight conversation" with their doctors, and preferred that parents be present. Half knew from their doctor about the link between being overweight and asthma, others knew from personal experience. Nearly all expressed the importance of providers initiating a weight management conversation. Most preferred conversation starters that recognized challenges and included parents' participation in weight management; least liked referred to "carrying around too much weight."Conclusions-Most teens responded favorably to initiating weight loss if it impacted asthma management, valued their provider addressing weight and family participation in weight management efforts. Adolescents' views enhance program development fostering more effective communication targeting weight improvement within the overall asthma management plan.
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