"A Gift to My Family for Their Future": Attitudes about Genetic Research Participation.

Background: Broad participation in genetic research is needed to promote equitable advances in disease treatment and prevention.

Objectives: The objective of the study was to assess motivations for, and concerns about, genetic research participation.

Methods: The Genetics in Research and Health Care Survey was sent in winter 2017-2018 to 57,331 adult Kaiser Permanente (KP) members from 7 US regions to assess attitudes about genetic testing in health care and research.

Return of Research-Related Genetic Test Results and Genetic Discrimination Concerns: Facilitators and Barriers of Genetic Research Participation in Diverse Groups.

Background: Most genetics studies lack the diversity necessary to ensure that all groups benefit from genetic research.

Objectives: To explore facilitators and barriers to genetic research participation.

Methods: We conducted a survey on genetics in research and healthcare from November 15, 2017 to February 28, 2018 among adult Kaiser Permanente (KP) members who had been invited to participate in the KP biobank (KP Research Bank).

Demographic differences in the utilization of clinical and direct-to-consumer genetic testing.

Genetic testing has increased over the last decade due to growth in the number of clinical and direct-to-consumer (DTC) tests. However, there is uncertainty about how increased DTC genetic testing affects disparities. Between November 2017 and February 2018, a nationwide electronic survey on experiences with genetic testing was conducted among adult Kaiser Permanente members.

Financial burden and quality of life among early-onset colorectal cancer survivors: A qualitative analysis.

Background: Colorectal cancer (CRC) diagnosed at ages <50 years old (early-onset CRC) has been increasing in the United States, resulting in a growing number of early-onset CRC survivors who may face significant financial and quality of life (QOL) challenges.

Objective: Identify themes from a patient advocate discussion about the impact of CRC on financial burden and QOL among early-onset CRC survivors.

Methods: We conducted a semi-structured, stakeholder discussion among 14 early-onset CRC survivors and one caregiver who were members of an advocacy group.

Cancer survivors' experiences with breakdowns in patient-centered communication.

Objective: This study analyzed cancer survivors' communication experiences that fell short of being patient-centered. Patients' descriptions of communication "breakdowns" were analyzed according to domain (eg, information exchange, fostering relationships, and managing emotions), whether it was a breakdown of commission (what was communicated) or omission (what should have been communicated) and whether it involved a clinician or the health care organization.

Methods: Cancer survivors (from an online panel of patients) completed the Patients Assessment of Communication Experience measure.

Measuring the Impact of Patient-Engaged Research: How a Methods Workshop Identified Critical Outcomes of Research Engagement.

Purpose: While strategies to evaluate the influence of engaging patient partners in research, such as the Patient-Centered Outcomes Research Institute (PCORI) WE-ENACT surveys, are beginning to emerge, a systematic set of measures for assessing the impact of patient engagement in research (PER) on study approaches and outcomes is lacking. This article describes a workshop and process used to identify and develop Critical Outcomes of Research Engagement (COREs). It proposes preliminary measures for assessing the impact of PER on the research process and outcomes of research studies.

Optimizing patient-reported outcome and risk factor reporting from cancer survivors: a randomized trial of four different survey methods among colorectal cancer survivors.

Purpose: The goal of this study was to determine response rates and associated costs of different survey methods among colorectal cancer (CRC) survivors.

Methods: We assembled a cohort of 16,212 individuals diagnosed with CRC (2010-2014) from six health plans, and randomly selected 4000 survivors to test survey response rates across four mixed-mode survey administration protocols (in English and Spanish): arm 1, mailed survey with phone follow-up; arm 2, interactive voice response (IVR) followed by mail; arm 3; email linked to web-based survey with mail follow-up; and arm 4, email linked to web-based survey followed by IVR.

Results: Our overall response rate was 50.