As a Research Scientist at the University of Washington, I manage and implement projects with the common thread of using stories from people who are affected by a health issue to inform improvements in ethics and policy, healthcare practice, implementation of needed services.
I provide independent and collaborative expertise in all aspects of the research process.
Qualitative research and evaluation methods, grounded theory, content and discourse analysis
Atlas.ti qualitative data software -- Systematic literature reviews -- Applied ethics
Competent in REDCap survey and SPSS data analysis software, statistical analyses.
I am always taking on new projects, so if you have a qualitative research question that needs support from study design to publication, contact me!
I provide independent and collaborative expertise in all aspects of the research process.
Qualitative research and evaluation methods, grounded theory, content and discourse analysis
Atlas.ti qualitative data software -- Systematic literature reviews -- Applied ethics
Competent in REDCap survey and SPSS data analysis software, statistical analyses.
I am always taking on new projects, so if you have a qualitative research question that needs support from study design to publication, contact me!
Community-Based Evaluation of APOL1 Genetic Testing in African Americans
Variants in the Apoliprotein L1 (APOL1) gene are causally associated with 7-10 fold increase risk of developing end-stage kidney disease (ESKD). These variants are found almost exclusively in people of West African ancestry, and ESKD is a well-known health disparity, affecting African Americans 2-4 times more than European Americans. However, there is nothing known to reduce the risk of APOL1-associated ESKD, so knowing one's APOL1 status does not help a doctor care for the patient. Because of this, and the distrust among many African American communities in medical and research systems, it is important to ask the community and affected patients how APOL1 information should be used. The project includes interviews with diverse stakeholders, public deliberation in three African-American communities (in Jackson, MS, Nashville, TN, and Seattle, WA); and a national meeting bringing together community members, scientists, bioethicists, advocates, and other stakeholders, to develop recommendations for APOL1 testing and disclosure of risk genotypes to African Americans who may be at risk of ESKD. Funding: NHGRI 1R01HG007879, Drs. Wylie Burke and Bessie Young (dual-PIs).
Understanding Considerations of Women with Adult Congenital Heart Disease (ACHD) Regarding Pregnancy
Until recently, most women with congenital heart disease were discouraged from becoming pregnant, largely because of a lack of medical evidence of risks and to support recommendations. However, many people with CHD desire pregnancy, and also pregnancies are not always intended. The qualitative aim of this study asks women with ACHD who became pregnant about the factors that influenced their motivation to become pregnant or maintain an unplanned pregnancy, the care they received surrounding their pregnancies, and how they balanced any risk information or warnings against becoming pregnant. We aim to better support future patients with ACHD who are considering pregnancy. Funding: Alpha Phi Fund grant, Dr. Jill Steiner, MD (PI).
Organizational Readiness for Hereditary Cancer Prevention and Control, Acting Assistant Professor Sarah Knerr, PhD, MPH (PI). UW K12 in Patient Centered Outcomes Research (PCOR) grant, institutional training program to support mentored career development research in the field of PCOR. Guidelines recommending We conducted interviews with a variety of specialist clinicians and genetic counselors who have championed the implementation of a guideline-recommended cancer screening program in their healthcare setting. Funding: AHRQ K12 HS22982-4, Sullivan (PI).
Using Ethics and User-Centered Design to Create Templates for EHR-Mediated Return of Genetic Test Results
This project seeks diverse patient perspectives on the use of electronic medical record patient portals to return genetic test results. Funding: NHGRI R21 HG009958, Korngiebel (PI).
Ethically responsible clinical decision support for Lynch Syndrome screening
This study focuses on universal colorectal tumor screening for Lynch Syndrome, as a model for the study of study of the barriers and facilitators to the implementation of genomic medicine in a range of healthcare settings. We aim to improve care, accommodate local needs and address bioethical issues of accessibility of cancer genetic screening across diverse settings. Funding: NHGRI K01 HG008180, Korngiebel (PI).
Variants in the Apoliprotein L1 (APOL1) gene are causally associated with 7-10 fold increase risk of developing end-stage kidney disease (ESKD). These variants are found almost exclusively in people of West African ancestry, and ESKD is a well-known health disparity, affecting African Americans 2-4 times more than European Americans. However, there is nothing known to reduce the risk of APOL1-associated ESKD, so knowing one's APOL1 status does not help a doctor care for the patient. Because of this, and the distrust among many African American communities in medical and research systems, it is important to ask the community and affected patients how APOL1 information should be used. The project includes interviews with diverse stakeholders, public deliberation in three African-American communities (in Jackson, MS, Nashville, TN, and Seattle, WA); and a national meeting bringing together community members, scientists, bioethicists, advocates, and other stakeholders, to develop recommendations for APOL1 testing and disclosure of risk genotypes to African Americans who may be at risk of ESKD. Funding: NHGRI 1R01HG007879, Drs. Wylie Burke and Bessie Young (dual-PIs).
Understanding Considerations of Women with Adult Congenital Heart Disease (ACHD) Regarding Pregnancy
Until recently, most women with congenital heart disease were discouraged from becoming pregnant, largely because of a lack of medical evidence of risks and to support recommendations. However, many people with CHD desire pregnancy, and also pregnancies are not always intended. The qualitative aim of this study asks women with ACHD who became pregnant about the factors that influenced their motivation to become pregnant or maintain an unplanned pregnancy, the care they received surrounding their pregnancies, and how they balanced any risk information or warnings against becoming pregnant. We aim to better support future patients with ACHD who are considering pregnancy. Funding: Alpha Phi Fund grant, Dr. Jill Steiner, MD (PI).
Organizational Readiness for Hereditary Cancer Prevention and Control, Acting Assistant Professor Sarah Knerr, PhD, MPH (PI). UW K12 in Patient Centered Outcomes Research (PCOR) grant, institutional training program to support mentored career development research in the field of PCOR. Guidelines recommending We conducted interviews with a variety of specialist clinicians and genetic counselors who have championed the implementation of a guideline-recommended cancer screening program in their healthcare setting. Funding: AHRQ K12 HS22982-4, Sullivan (PI).
Using Ethics and User-Centered Design to Create Templates for EHR-Mediated Return of Genetic Test Results
This project seeks diverse patient perspectives on the use of electronic medical record patient portals to return genetic test results. Funding: NHGRI R21 HG009958, Korngiebel (PI).
Ethically responsible clinical decision support for Lynch Syndrome screening
This study focuses on universal colorectal tumor screening for Lynch Syndrome, as a model for the study of study of the barriers and facilitators to the implementation of genomic medicine in a range of healthcare settings. We aim to improve care, accommodate local needs and address bioethical issues of accessibility of cancer genetic screening across diverse settings. Funding: NHGRI K01 HG008180, Korngiebel (PI).