Social distancing during the COVID-19 pandemic: quantifying the practice in Michigan - a "hotspot state" early in the pandemic - using a volunteer-based online survey.

BACKGROUND: Public Health policies related to social distancing efforts during the COVID-19 pandemic helped slow the infection rate. However, individual-level factors associated with social distancing are largely unknown. We sought to examine social distancing during the COVID-19 pandemic in Michigan, an infection "hotspot" state in the United States early in the pandemic. METHODS: Two surveys were distributed to Michigan residents via email lists and social media following COVID-19 related state mandates in March; 45,691 adults responded to the first survey and 8512 to the second. Staying home ≥ 3 out of 5 previous days defined having more social distancing. Logistic regression models were used to examine potential factors associated with more social distancing. RESULTS: Most respondents were women (86% in Survey 1, 87% in Survey 2). In Survey 1, 63% reported more social distancing, increasing to 78% in Survey 2. Female sex and having someone (or self) sick in the home were consistently associated with higher social distancing, while increasing age was positively associated in Survey 1 but negatively associated in Survey 2. Most respondents felt social distancing policies were important (88% in Survey 1; 91% in Survey 2). CONCLUSIONS: Michiganders responding to the surveys were both practicing and supportive of social distancing. State-level executive orders positively impacted behaviors early in the COVID-19 pandemic in Michigan. Additional supports are needed to help vulnerable populations practice social distancing, including older individuals.

Using action research and a community-academic partnership to understand clinical trial participation: a patient-centered perspective.

BACKGROUND: Clinical trials that are patient-centered appear to be more successful (e.g., clinical outcomes, improved communication, mutual empowerment, changed attitudes), thus, action research may be a field of importance. The current study explores the Formation and Execution of Activities phases of a community-academic partnership (CAP). METHODS: Members consisted of industry stakeholders, a healthcare/academic institution, and patients/families with lived experiences as cancer survivors and/or caregivers. Retrospectively, CAP members described the facilitating and/or hindering factors present in the partnership development. A document review process was used. Field notes from three CAP meetings, which focused on understanding clinical trial participation, were analyzed using a thematic approach. RESULTS: Seven facilitating and three hindering factors were present. Interpersonal (vs. operational) processes were referenced as influential facilitating factors more often. Themes that emerged included 'trials as a treatment option', 'leaving a legacy', and 'timing is critical.' CONCLUSION: This study provides a patient-centered perspective on barriers/challenges of clinical trial participation and how to improve future perceptions.

Clinical trials are more successful when patients are engaged, and their perspectives have been considered in the study design. Community-academic partnerships (CAPs) are one way to ensure patients are more engaged in the research process by creating a collaboration where all parties involved play an equitable role. We provide an example of a CAP with an industry stakeholder, a healthcare/academic institution, and patients as well as families with lived experiences as cancer survivors and/or caregivers. Described here two phases of the CAP: the Formation and the Execution of Activities phases. The Formation phase covers the collaboration process and development of the CAP. In our study, to better understand this phase, CAP members described what did and did not go well during the partnership development. We found more aspects went well than did not and that processes related to the quality of the relationship and communication among CAP members were important. The Execution of Activities phase focuses on how the CAP is working towards an agreed upon outcome. In our study, to better understand this phase, we reviewed notes taken at previous CAP meetings that focused on exploring participation in clinical trials as a treatment option. We found that when it comes to participation in clinical trials, patients and/or caregivers with lived experiences with cancer, felt that timing of this treatment option was important and that reasons for participation included wanting to leave a legacy. In this paper we describe some challenges of clinical trial participation, identified by patients and caregivers, and discuss how to improve views of clinical trial participation in the future.

Bridging the Patient Engagement Gap in Research and Quality Improvement Utilizing the Henry Ford Flexible Engagement Model.

PURPOSE: This paper was intended to share a flexible engagement model (FEM) for organizing a structure to obtain patient input regarding health care operations and research, provide greater detail on recruitment, retention, and dissemination strategies, and demonstrate successes and potential applications in other health care settings. METHODS: Utilizing a pragmatic approach, the Patient-Engaged Research Center (PERC) at Henry Ford Health System developed the FEM, a 7-step process to introduce interested patients/caregivers to the patient advisor program and to follow up with placements. PERC developed a meeting evaluation to measure participant satisfaction. Retention and dissemination methods to keep participants consistently engaged included monthly email blasts, an annual patient advisor retreat, and inviting patient advisors to attend/present at local and national conferences. RESULTS: As of January 2020, the program had 419 patient advisors. Almost 50% self-reported as Caucasian and 31% as African American; 73% were women, and most were 45-74 years of age. Recruitment methods proved effective, as 85% of advisors were initially engaged through print and digital marketing. Mean advisor orientation workshop evaluation scores regarding content, facilitators, and logistics were high, with all 4.5 or higher on a Likert scale of 1 (strongly negative) to 5 (strongly positive). CONCLUSIONS: Given the FEM's flexible nature and adaptability, PERC has been successful in effectively leveraging the patient voice and experiences in research and health care delivery. Further research could investigate the model's generalizability, return on investment, and how to formally embed its methodology institutionally.

Flexible model for patient engagement: Achieving quality outcomes and building a research agenda for head and neck cancer.

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.