Rachel Grob leads action research to ensure policy reflects patients’ experiences

Rachel Grob speaks at the National Patient Advocacy Foundation
Rachel Grob presents at the National Patient Advocate Foundation conference on genomics.

Through her career-long focus on listening to, documenting, and understanding patients’ experiences in health care, CPP’s Director of National Initiatives, Rachel Grob, leads research on gaps that others in health care often miss.

Grob leads one team of researchers contributing to the Health Experiences Research Network (HERN), a consortium of research groups who employ a specific, rigorous set of qualitative research methods to ensure diverse patients’ voices are represented in their sampling. Because health services and medical research has often included sampling and other biases, results often miss important findings and variations in experience among specific groups of patients, including women, people of color, indigenous populations, and LGBTQ+ individuals.

To advance systems change, Grob splits her time between managing research, disseminating results, and ensuring more teams are trained in the research approach. One specific area of research investigates how patients experience the field of genomic medicine, or how genetic testing and counseling can guide treatment. By providing a new module for patients navigating genomic testing, the team hopes to offer guidance for patients and policymakers alike in better understanding how diverse groups of patients experience this emerging field.

Last year, for example, Grob presented her research findings at a conference of the National Patient Advocate Foundation, where she offered research insights on patients’ narratives in navigating care when dealing with hereditary cancers. Attendees at the conference shared cutting-edge insights into several themes:

  • Barriers to and adequate delivery of genomic medicine to underserved populations;
  • Patient experiences with genomic medicine;
  • Genomic medicine as an opportunity to reduce disparities and improve population health;
  • Closing the knowledge gap about genomic medicine for patients and health care providers;
  • Dealing with inconsistent and complex insurance policy coverage of screening and treatment.

Grob’s research team helps identify patterns and variations across patients’ experiences, offering new insights with profound implications for the ways health care systems and policies can become more responsive–and more proactive–around the the needs of diverse groups of patients.


To access a list of our published research, please visit our publications page.