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Project History
Asthma in the Adolescent
Approaches to asthma management in obese adolescents
This project seeks to improve asthma control among overweight or obese adolescents. The goal of this project is to conduct in-depth interviews and have comfortable conversations with adolescents and their parents regarding asthma and weight status. The information gathered from the interviews will help to create a physician discussion guide that incorporates the benefits of behavioral strategies, including Motivational Interviewing, to facilitate physician-patient discussions about weight, asthma, and ultimately, achieving a healthy lifestyle.
The project is being developed and conducted by:
- Christine LM Joseph, PhD, PI
- Allergist, Rachel Kado, M.D.
- Pediatrician, Stacy Leatherwood, M.D.
- Gwen Alexander, PhD, Research Scientist.
Recruitment for this study is now closed. Thank you to all who participated!
Hysterectomy Guidelines for Patients
Hysterectomy surgical approach guidelines
This project focuses on patient experiences and expectations before and after hysterectomy, an operation that removes a woman’s uterus. A hysterectomy can be performed for many different reasons; therefore, this study aims to determine which outcomes are of interest to the pre-surgery hysterectomy patient and whether those expectations are met.
Utilizing focus groups of pre-hysterectomy and post-hysterectomy women, questions of expectations, goals, type of hysterectomy, and recovery will be asked.
Surveys will be developed for the observational study phase, in which women will be recruited before they receive a hysterectomy and will be asked to complete surveys at pre-determined intervals.
Recruitment for this study is now closed. We recruited 451 women to participate in the observational phase of our study. Thank you to those who participated!
We are currently reviewing data and writing manuscripts. Results from our study can be found in the following journal articles:
- Bossick, A. S., Sangha, R., Olden, H., Alexander, G. L., & Wegienka, G. (2018). Identifying What Matters to Hysterectomy Patients: Postsurgery Perceptions, Beliefs, and Experiences. Journal of patient-centered research and reviews, 5(2), 167-175.
- Kassem, Z., Coleman, C.M., Bossick, A.S., Su, W., Sangha, R., & Wegienka, G. (2019). Patients Perceptions of Planned Organ Removal During Hysterectomy. Journal of patient-centered research and reviews, 6(1), 28-35.
This project is led by Epidemiologist and Associate Scientist Ganesa Wegienka, Ph.D. and Director of Residency Training Program Roopina, Sangha, M.D., M.P.H., FACOG.
This project is coordinated by Mr. Chad Coleman, MPH.
Well-Child Care
Pediatric preventative health screenings
This project is a research study that focuses on healthy weight messaging during children/adolescent’s annual checkup. Through patient-centered information gathered from focus groups made up of providers, teens, and parents, the study used surveys to collect experiences, expectations, and recommendations that will improve the pediatric checkup experience and increase positive health outcomes.
Recruitment for this study is now closed. We had 468 parents and 235 children complete our surveys. Thank you to all who participated! Data analyses and manuscript writing are ongoing.
This project is led by Epidemiologist and Assistant Scientist Andrea Cassidy-Bushrow, Ph.D. and the Department Chair of Pediatrics, Physician, Charles Barone, M.D.
The project is coordinated by Mr. Chad Coleman, MPH.
Head and Neck Cancer Study
Head and Neck cancers are rapidly increasing and predicted to represent a major public health burden to decades to come.
PERC received its first PCORI (Patient-Centered Outcomes Research Institute) funding for a collaborative project to focus on SCOOP, which stands for Squamous cell carcinoma of the oropharynx.
In 2012, 52,000 adults were diagnosed with head and neck cancers, comprising 3 % of all US cancers with the majority being squamous cell carcinomas. PERC’s goal in this project is to create a patient advisory council of head and neck cancer survivors/caregivers to learn about patient preferences in choosing a cancer treatment (surgery vs. radiation) and whether quality of life and survivorship preferences affect the outcomes of treatment. This project will be important to understanding the short term and long term sequelae of treatment and the patient outcomes that are most critical to the patient and their families related to the survivorship experience.
PERC is currently looking for SCOOP patients and their family members to participate in this newly-funded program by becoming a patient-advisors. Become a Patient Advisor today.
Engaging Patients and Other Stakeholders to Develop a Patient-Centered Research Agenda for Cancer Precision Medicine
Project Abstract >
Inherent in cancer precision medicine (CaPM) is the hypothesis that cancer treatment could be markedly improved if cancer therapies were guided by a tumor’s genetic makeup. Although there are countless articles in the press reporting miraculous anecdotes of patients treated with precision medicine, there are many challenges to overcome before all patients are able to benefit.
The project team’s proposed solution is to 1) convene a group of stakeholders including current or former cancer patients and their caregivers, payers, oncologists, nurses, genetic counselors, and researchers with expertise in genomics and cancer research from Henry Ford Health and Health Alliance Plan in the Metro Detroit Area as well as national industry leaders in drug development and genetic informatics and 2) come to a consensus definition and understanding of CaPM and use that knowledge to collaboratively determine a patient-centered research agenda that will meet all stakeholders’ needs.
The team’s long-term objective is to encourage patient-centered research as it relates to CaPM. In order to accomplish this objective, this engagement award will focus on the following short-term objectives:1) educate all stakeholders on CaPM and patient-centered outcomes research (PCOR) and comparative effectiveness research (CER), 2) solicit suggestions from each stakeholder group regarding future PCOR/CER questions to address knowledge gaps and cooperatively prioritize a research agenda, 3) with representatives from all stakeholder groups, write a cohesive narrative summarizing this research agenda, and 4) develop dissemination strategies tailored to each stakeholder group.
In order to achieve these objectives, the team has already identified project co-leads representing each type of stakeholder to facilitate recruitment and engagement within each group. Additionally, prior to the start of team meetings, investigators will educate patients and their caregivers on how to participate on the team and explain key communication and active listening skills. The project team will also recruit and educate the payer, provider, researcher, and industry stakeholders on skills for engaging with patients on teams. The investigators will hold a “Kickoff Symposium” to help build relationships and facilitate co-learning.
The team will utilize strategic planning and nominal group techniques to elicit and prioritize ideas and, in the second year of this award, form workgroups for two tracks: 1) writing the cohesive narrative or “white paper” and 2) developing the dissemination plan. Workgroups will be supported by staff from the Patient-Engaged Research Center at Henry Ford Health.
By the end of this project, at least four tangible outcomes will be produced: 1) a pre/post engagement and learning survey from the Kickoff Symposium that will establish that the intended goal of co-learning was achieved and identify areas for improvement, 2) a prioritized list of PCOR/CER questions, 3) a collaboratively written cohesive narrative summarizing these questions and their importance will jointly show the importance of reciprocal relationships and demonstrate engagement using cross-stakeholder partnerships, and 4) a national plan for dissemination approaches tailored to each stakeholder group will encourage knowledge transfer among team members and between the team and the public. Collectively, these outcomes will be a foundation for future patient-centered research in the quickly evolving field of CaPM.