Exploring Human Stories of Illiness: The Health Humanities Portrait Project
The Health Humanities Portrait Project builds new curricula in the health humanities that focuses on learners’ acquisition of critical portraiture and structural competency skills. The Health Humanities Portrait Approach (HHPA) builds learners’ skills to analyze pressing social issues of the day that relate to health, medicine, illness and disability. The Health Humanities Portrait is the patient-centered delivery tool of the HHPA that utilizes first-person narratives, paired with relevant humanities scholarship, to delve into the multifaceted nature of social problems, both domestically and internationally.
The Health Humanities Portrait Project was funded by the National Endowment for the Humanities and the University of Illinois at Chicago.
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Cystic Fibrosis Reproductive and Sexual Health Collaborative
In 2016, Sufian co-founded (with Emily Godfrey, MD, MPH) the Cystic Fibrosis Sexual and Reproductive Health Collaborative (CFReSHC) with funding from PCORI. CFReSHC is a national, patient-driven, online partnership among patients, providers, and researchers that pursues patient-engaged, research directions on sexual and reproductive health (SRH) issues for women with CF. Her other work in CF includes serving as PI on a CFF grant that has created a CF-SRH resource guide by patients for providers and patients (cfreshc.org/srh-guide). As a researcher-patient, she is deeply committed to improving scientific knowledge about women’s health in CF.
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Menstrual Symptom Tracking to Understand and Assess (women) Living with CF (MENSTRUAL), is a mixed methods pilot study whose purpose is to explore if and how Cystic Fibrosis (CF) symptoms align with the menstrual cycle. By utilizing a period tracking app, the study investigated when in the cycle, which symptoms, and how severe the symptoms get for adult women with CF. The study team has also conducted qualitative interviews to understand how this phenomenon affects notions of embodiment and impacts these women’s lives.
The study is funded by the Cystic Fibrosis Foundation.
Engaging Virtually in the Age of COVID-19: Sharing Lessons and Creating Pathways for Transdisciplinary Research on Women’s Health Issues in Cystic Fibrosis and Breast Cancer
Engaging Virtually is a patient-engaged project whose purpose is two-fold: 1) to export the CFReSHC model of virtual patient engagement to the Breast Cancer community to see if the model can work for another disease population and can produce robust research questions for further inquiry in the area of sexual and reproductive health and breast cancer; 2) to create a Lab for establishing Transdisciplinary Team Research (LeTTR), made up of breast cancer and CF researchers from a wide variety of fields (clinical medicine, social science, public health, genetics, humanities, law, etc.), that will translate the questions formulated and prioritized by patients and translate them into viable research studies. LeTTR consists of 30 researchers, 8 patient-partners, and 2 Patient Lab Leads; it is divided into 8 topical transdisciplinary research teams where collaborative work is performed to map research studies for future implementation.
Engaging Virtually is funded by the Patient-Centered Outcomes Research Institute.