About Us | CFReSHC

CFReSHC is a collaborative of patients, clinicians, and researchers working together to improve the sexual and reproductive health (SRH) knowledge, resources, and standards of care for people with CF.

Our mission was to complete patient-engaged research through partnerships with people with CF, researchers, and advocates. Our research responded to the health needs of the CF community, provided data for healthcare professionals, and ultimately paved the way for improved reproductive and sexual health resources, healthcare, and knowledge for people with CF.

How we are different:

Typically, researchers develop research questions, solicit funding, and conduct research without patient input. CFReSHC uses the principles of patient-engaged outcomes research (PCOR), where people with CF are active participants throughout the entire research process: from identifying research priorities and questions, to participating in project design and grant writing, to study implementation and dissemination.

What we have accomplished:

We held virtual meetings for people with CF, featuring an expert speaker who presented on a focus topic and answered audience questions. Afterwards, attendees discussed the focus topic in structured breakout groups. This allowed attendees to share their stories in a supported environment while also enabling patient participation in the research process through identifying and prioritizing research priorities.

We built a Patient-Driven PCOR Lab for Transdisciplinary Team Research (LeTTR; Lab for Establishing Transdisciplinary Team Research). Lab stakeholders translated patient-generated research questions into studies designed and executed by transdisciplinary research teams that include patient partners throughout the research process.



Governance Board

The board was composed of elected patients, researchers, and clinicians. Members directed CFReSHC activities by making strategic decisions about future collaboration and projects. Members served on subcommittees, delegated tasks, submitted research proposals, and handled meeting planning, recruitment, and communication.



Patient Task Force

Members of the PTF attended monthly meetings, voted on research priorities, and received a monthly newsletter on CFReSHC activities.

Learn More



Transdisciplinary Team Research Lab

Members provided expertise on SRH issues, served as PTF speakers, and sought funding for CFReSHC research priorities.

Our Research

CFReSHC Co-Founders:

Emily Godfrey

Co-Founder

Emily M. Godfrey, MD MPH is an Associate Professor in the Departments of Family Medicine and Obstetrics and Gynecology at the University of Washington (UW). She is a family physician, with a clinical focus on family planning and outpatient women’s healthcare. She is a core faculty member of the University of Washington Family Medicine Research Section whose research efforts include improving sexual and reproductive health for women living with chronic and complex medical conditions. Dr. Godfrey is a patient-centered outcomes-based researcher whose current work focuses on reproductive health for women with cystic fibrosis and developing new modalities to improve the quality of patient-informed contraceptive care delivered in the clinical setting. She is the Co-founder and current Lead of the Cystic Fibrosis Reproductive and Sexual Health Collaborative (CFReSHC). Dr. Godfrey earned her undergraduate degree from the University of Wisconsin-Madison and holds a Medical Degree from the Medical College of Wisconsin. She completed a family medicine residency at the West Suburban Medical Center in Oak Park, Illinois. She is a graduate of the Fellowship in Family Planning and holds a Master of Public Health Degree from the University of Rochester. She is a member of the expert committee on the Centers for Disease Control and Prevention Division of Reproductive Health U.S. Medical Eligibility Criteria for Contraceptive use, and a member of the World Health Organization guideline development group for sexuality-related communication. Dr. Godfrey has published dozens of articles related to family planning and is a fellow of the American Academy of Family Physicians and of the Society of Family Planning.

Sandy Sufian

Co-Founder

Sandy Sufian, PhD, MPH, is a woman with CF and the Co-Founder of CFReSHC. She is Associate Professor of Health Humanities and History in the Department of Medical Education (College of Medicine) and of Disability Studies in the Department of Disability and Human Development (College of Applied Health Sciences) at University of Illinois-Chicago. She is an affiliated faculty member in the History Department and the School of Public Health. Dr. Sufian is a national expert on disability experience, illness experience, and healthcare. She has training in history, public health, and health services research. She has written two books, is working on a third, and has written numerous articles. She is also the Principal Investigator of a two year National Endowment for the Humanities grant that builds health humanities cases for physicians in training. Dr. Sufian has been interested in women’s sexual and reproductive issues and their interaction with CF for over 20 years and inspired the idea, through conversations with Emily Godfrey, for this CFReSHC work. Sandy is the Principal Investigator of the CFF Impact Award grant developing new PTF sessions and the CFReSHC website. She is also the lead on the CFReSHC hormone workgroup. In addition, Sandy is an elected member of the Patient-Centered Outcomes Research Institute’s (PCORI) Patient Engagement Advisory Panel, a national panel that advises PCORI on patient engagement policies and practices. She is also a PCORI Ambassador.

Acknowledgements

The Impact Award project team’s sincerest gratitude goes to the women with CF who are the Patient Task Force patient-partners of CFReSHC. We would like to acknowledge all the women who worked on this guide, either by writing chapters and presenting their work at a PTF (n=40), attending our PTFs (average n=20 per meeting) to share their experiences and to brainstorm with us, replying to our polls, and engaging with us on social media.

We must extend our thanks to the expert consultants, especially Susie Baldwin, MD, MPH, who reviewed the first version of the guide to ensure its medical accuracy and overall scientific integrity. We also thank the CF clinic teams who took their time to review an assigned chapter for accuracy and to attend meetings with us to offer constructive feedback. We thank Dr. Jennifer Taylor-Cousar, MD, for agreeing to disseminate chapters in the Guide (3.0) in her clinic so we can understand how best to use the Guide in the clinic and serve adult patients. We appreciate all our contributors’ and partners’ time and interest in making sure this guide resonates with providers and is valuable to patients.

We also thank two physician assistant students, Jackie Johnson and Elizabeth Bergstedt, for conducting a referral network project and for reviewing and improving the language of the priority questions to enable patient-centered, provider-patient communication.

This project could not have been done without our funders, the Cystic Fibrosis Foundation (Award number: SUFIAN18IM-24IM; IRB exemption: 20190681-124636-1) and PCORI (Award number: 10569-U Wash). Our CFF Impact Award Program Officers, Piper Beatty and Melody Zelenz, were extremely helpful with their guidance and logistical support. The Head and staff of the Department of Medical Education at the University of Illinois-Chicago provided invaluable, behind-the-scenes support for this grant. Impact Award project manager and website designer, Mallika Patil, offered her website expertise and helped put this guide online.

Works Cited

Rousset Jablonski C, Reynaud Q, Perceval M, et al. Contraceptive practices and cervical screening in women with cystic fibrosis. Human Reproduction. 2015;30(11):2547-2551. https://www.ncbi.nlm.nih.gov/pubmed/26345688. doi: 10.1093/humrep/dev217.
Gage LA. What deficits in sexual and reproductive health knowledge exist among women with cystic fibrosis? A systematic review. Health & Social Work. 2012;37(1):29-36. https://www.ncbi.nlm.nih.gov/pubmed/22908479. doi: 10.1093/hsw/hls003.
Kazmerski TM, Sawicki GS, Miller E, et al. Sexual and reproductive health behaviors and experiences reported by young women with cystic fibrosis. Journal of Cystic Fibrosis. 2018;17(1):57-63. http://dx.doi.org/10.1016/j.jcf.2017.07.017. doi: 10.1016/j.jcf.2017.07.017.
Fair A, Griffiths K, Osman LM. Attitudes to fertility issues among adults with cystic fibrosis in Scotland. Thorax. 2000;55(8):672-677. http://dx.doi.org/10.1136/thorax.55.8.672. doi: 10.1136/thorax.55.8.672.