Decision quality and regret with treatment decisions in women with breast cancer: Pre-operative breast MRI and breast density.

PURPOSE: We evaluated self-report of decision quality and regret with breast cancer surgical treatment by pre-operative breast MRI use in women recently diagnosed with breast cancer. METHODS: We conducted a survey with 957 women aged 18 + with stage 0-III breast cancer identified in the Breast Cancer Surveillance Consortium. Participants self-reported receipt of pre-operative breast MRI. Primary outcomes were process measures in the Breast Cancer Surgery Decision Quality Instrument (BCS-DQI) (continuous outcome) and Decision Regret Scale (dichotomized outcome as any/none). Generalized estimating equations with linear and logit link were used to estimate adjusted associations between breast MRI and primary outcomes. All analyses were also stratified by breast density. RESULTS: Survey participation rate was 27.9% (957/3430). Study population was primarily > 60 years, White, college educated, and diagnosed with early-stage breast cancer. Pre-operative breast MRI was reported in 46% of women. A higher proportion of women who were younger age (< 50 years), commercially insured, and self-detected their breast cancer reported pre-operative breast MRI use. In adjusted analysis, pre-operative breast MRI use compared with no use was associated with a small but statistically significantly higher decision quality scores (69.5 vs 64.7, p-value = 0.043). Decision regret did not significantly differ in women who reported pre-operative breast MRI use compared with no use (54.2% v. 48.7%, respectively, p-value = 0.11). Study results did not vary when stratified by breast density for either primary outcome. CONCLUSIONS AND RELEVANCE: Breast MRI use in the diagnostic work-up of breast cancer does not negatively alter women's perceptions of surgical treatment decisions in early survivorship. CLINICAL TRIALS REGISTRATION NUMBER: NCT03029286.

Women's considerations and experiences for breast cancer screening and surveillance during the COVID-19 pandemic in the United States: A focus group study.

The COVID-19 pandemic resulted in numerous changes in delivery of healthcare services, including breast cancer screening and surveillance. Although facilities have implemented a number of strategies to provide services, women's thoughts and experiences related to breast cancer screening and surveillance during a pandemic are not well known. This focus group study with women across seven states recruited through the Breast Cancer Surveillance Consortium aims to remedy this gap in information. Thirty women ranging in age from 31 to 69 participated in five virtual focus groups, eight of whom had prior breast cancer. The first three focus groups covered a range of topics related to screening and surveillance during the pandemic while the last two groups covered experiences and then a review of sample communications to women about screening and surveillance during the pandemic to obtain reactions and recommendations. More than half of the women had screening or surveillance during the pandemic. Coding and analyses resulted in nine themes in three topic areas: decision factors, screening experiences, and preferred communications. Themes included weighing the risks of COVID-19 versus cancer; feelings that screening and surveillance were mostly safe but barriers may be heightened; feeling safe when undergoing screening but receiving a range of pandemic-specific communications from none to a lot; and wanting communications that are personalized, clear and concise. Based on these findings, providers and facilities should assure women of pandemic safety measures, review methods and content of communications, and assess for barriers to screening that may be amplified during the pandemic, including anxiety and access.

Surveillance for second breast cancer events in women with a personal history of breast cancer using breast MRI: a systematic review and meta-analysis.

PURPOSE: Women with personal history of breast cancer (PHBC) are currently recommended to receive annual mammography for surveillance of breast cancer recurrence or new primary. However, given issues in accuracy with mammography, there is a need for evolving evidence-based surveillance recommendations with supplemental imaging. In this systematic review, we compiled and compared existing studies that describe the test performance of surveillance breast MRI among women with PHBC. METHODS: We searched PubMed and EMBASE using MeSH terms for studies (2000-2019) that described the diagnostic characteristics of breast MRI in women with PHBC. Search results were reviewed and included based on PICOTS criteria; quality of included articles was assessed using QUADAS-2. Meta-analysis of single proportions was conducted for diagnostic characteristics of breast MRI, including tests of heterogeneity. RESULTS: Our review included 11 articles in which unique cohorts were studied, comprised of a total of 8338 women with PHBC and 12,335 breast MRI done for the purpose of surveillance. We predict intervals (PI) for cancer detection rate per 1000 examinations (PI 9-15; I2 = 10%), recall rate (PI 5-31%; I2 = 97%), sensitivity (PI 58-95%; I2 = 47%), specificity (PI 76-97%; I2 = 97%), and PPV3 (PI 16-40%; I2 = 44%). CONCLUSIONS: Studies addressing performance of breast MRI are variable and limited in population-based studies. The summary of evidence to date is insufficient to recommend for or against use of breast MRI for surveillance among women with PHBC.

Knowledge and Perception of Breast Density, Screening Mammography, and Supplemental Screening: in Search of "Informed".

BACKGROUND: As of 2019, 37 US states have breast density notification laws. No qualitative study to date has examined women's perspectives about breast density in general or by states with and without notification laws. OBJECTIVE: Explore women's knowledge and perceptions of breast density and experiences of breast cancer screening across three states with and without notification laws. DESIGN: Qualitative research design using four focus groups conducted in 2017. PARTICIPANTS: Forty-seven women who had a recent normal mammogram and dense breasts in registry data obtained through the Breast Cancer Surveillance Consortium. APPROACH: Focus groups were 90 min, audio recorded, and transcribed for analysis. Data were analyzed using mixed deductive and inductive coding. KEY RESULTS: Women reported variable knowledge levels of personal breast density and breast density in general, even among women living in states with a notification law. A number of women were aware of the difficulty of detecting cancer with dense breasts, but only one knew that density increased breast cancer risk. Across all states, very few women reported receiving information about breast density during healthcare visits beyond being encouraged to get supplemental imaging or to pay for new mammography technology (i.e., breast tomosynthesis). Women offered more imaging or different technology held strong convictions that these were "better," even though knowledge of differences, effectiveness, or harms across technologies seemed limited. Women from all states expressed a strong desire for more information about breast density. CONCLUSIONS: More research needs to be done to understand how the medical community can best assist women in making informed decisions related to breast density, mammography, and supplemental screening. Options to explore include improved breast density notifications and education materials about breast density, continued development of personalized risk information tools, strategies for providers to discuss evidence and options based on risk stratification, and shared decision-making.

Surveillance Breast MRI and Mammography: Comparison in Women with a Personal History of Breast Cancer.

Background There is lack of consensus regarding the use of breast MRI for routine surveillance for second breast cancer events in women with a personal history of breast cancer. Purpose To compare performance of surveillance mammography with breast MRI. Materials and Methods This observational cohort study used prospectively collected data and included 13 266 women age 18 years and older (mean age, 60 years ± 13) with stage 0-III breast cancer who underwent 33 938 mammographic examinations and 2506 breast MRI examinations from 2005 to 2012 in the Breast Cancer Surveillance Consortium. Women were categorized into two groups: mammography alone (n = 11 745) or breast MRI (n = 1521). Performance measures were calculated by using end-of-day assessment and occurrence of second breast cancer events within 1 year of imaging. Logistic regression was used to compare performance for breast MRI versus mammography alone, adjusting for women, examination, and primary breast cancer characteristics. Analysis was conducted on a per-examination basis. Results Breast MRI was associated with younger age at diagnosis, chemotherapy, and higher education and income. Raw performance measures for breast MRI versus mammography were as follows, respectively: cancer detection rates, 10.8 (95% confidence interval [CI]: 6.7, 14.8) versus 8.2 (95% CI: 7.3, 9.2) per 1000 examinations; sensitivity, 61.4% (27 of 44; 95% CI: 46.5%, 76.2%) versus 70.3% (279 of 397; 95% CI: 65.8%, 74.8%); and biopsy rate, 10.1% (253 of 2506; 95% CI: 8.9%, 11.3%) versus 4.0% (1343 of 33 938; 95% CI: 3.7%, 4.2%). In multivariable models, breast MRI was associated with higher biopsy rate (odds ratio [OR], 2.2; 95% CI: 1.9, 2.7; P < .001) and cancer detection rate (OR, 1.7; 95% CI: 1.1, 2.7; P = .03) than mammography alone. However, there were no differences in sensitivity (OR, 1.1; 95% CI: 0.4, 2.9; P = .84) or interval cancer rate (OR, 1.1; 95% CI: 0.6, 2.2; P = .70). Conclusion Comparison of the performance of surveillance breast MRI with mammography must account for patient characteristics. Whereas breast MRI leads to higher biopsy and cancer detection rates, there were no significant differences in sensitivity or interval cancers compared with mammography. © RSNA, 2019 Online supplemental material is available for this article. See also the editorial by Newell in this issue.

Patterns of Breast Imaging Use Among Women with a Personal History of Breast Cancer.

BACKGROUND: National patterns of breast imaging in women with a personal history of breast cancer (PHBC) are unknown making evaluation of annual surveillance recommendations a challenge. OBJECTIVE: To describe variation in use of mammography and breast magnetic resonance imaging (MRI) examinations beginning 6 months after diagnosis among women with PHBC in US community practice. We report on the breast imaging indication, imaging intervals, and time since breast cancer diagnosis by examination type. DESIGN: Longitudinal study using cross-sectional data. SETTING: Breast Cancer Surveillance Consortium breast imaging facilities. PARTICIPANTS: 19,955 women diagnosed between 2005 and 2012 with AJCC stage 0-III incident breast cancer who had 69,386 mammograms and 3,553 breast MRI examinations from January 2005 to September 2013; median follow-up of 37.6 months (interquartile range, 22.1-60.7). MAIN MEASURES: Breast imaging indication, imaging intervals, and time since breast cancer diagnosis by examination type. KEY RESULTS: Among women with a PHBC who received breast imaging, 89.4% underwent mammography alone, 0.8% MRI alone, and 10.3% had both mammography and MRI. About half of mammograms and MRIs were indicated for surveillance vs. diagnostic, with an increase in the proportion of surveillance exams as time from diagnosis increased (mammograms, 45.7% at 1 year to 72.2% after 5 years; MRIs, 54.8% at 1 year to 78.6% after 5 years). In the first post-diagnosis period, 32.8% of women had > 2 breast imaging examinations and of these, 65.8% were less than 6 months apart. During the first 5-year post-diagnosis, the frequency of examinations per year decreased and the interval between examinations shifted towards annual examinations. CONCLUSION: In women with a PHBC who received post-diagnosis imaging, a third underwent multiple breast imaging examinations per year during the first 2-year post-diagnosis despite recommendations for annual exams. As time since diagnosis increases, imaging indication shifts from diagnostic to surveillance.

Success Rates for Retinal Detachment Repair in Alberta: A Physician Learning Program Initiative.

OBJECTIVE: To identify primary surgical success rates for retinal detachment repair in Alberta and compare functional outcomes of methods of repair. METHODS: Data was retrospectively extracted from the Alberta Health Services Discharge Abstract Database and the National Ambulatory Care Reporting System for all patients diagnosed with retinal detachment and vitreoretinal procedures during the 2008/09 to 2012/13 fiscal years. RESULTS: Of the 5,433 surgeries for retinal detachment identified, 279 were excluded due to invalid provincial health numbers, unidentified procedure location, and/or treating physician other than an Alberta retina surgeon. The final analysis included 4,336 detachments in 4,020 patients. The average primary retinal detachment success rate was 84.9% (3,680/4,336). Primary success rates varied between vitrectomy only (84.9%, 2,149/2,532), vitrectomy and scleral buckle (85.5%, 818/957), and scleral buckle (84.4%, 702/832). CONCLUSIONS: Alberta retina surgeons have an average primary success rate of 84.9% (3,680/4,336) for repair of retinal detachments. This result is in keeping with other published retinal detachment success rate studies.

Analyzing and Validating a Structure for Measuring the Nurse Practice Environment.

Nurse shortages pose a challenge in many countries and retaining existing nursing staff is crucial to addressing these shortages. To inform possible interventions aimed at retaining nurses, managers need a comprehensive understanding of the nature of the nurse practice environment. The scales from two of the main instruments used to assess nurses' practice environments are tested. A survey of an online panel obtained responses from 459 Australian nurses. Analyses determined a combination of items with good construct validity and improved predictive utility for outcomes of interest for individual nurses. By essentially combining the best items from each instrument, a more comprehensive representation of the nurse work environment is obtained with improved predictive utility. The resulting combined set of scales is recommended for analyses of the nurse working environment and uses a combined set of scales from each of the two source instruments, namely: nurse participation in hospital affairs, recognition, nursing process, peer work standards, nursing competence, orientation, managers, resources, nurse-physician collaboration, and positive scheduling climate. Future research can then build on that strong set of items with a validated structure and predictive utility to inform management and interventions.

The State of the Psychological Contract, Justice and Engagement Drive Nurses' Performance Behaviors.

This paper investigates the links between the psychological contract and organizational justice variables on to performance behaviors through the mechanisms of engagement, job satisfaction and psychological distress, beyond the perception-oriented individual factor of negative affectivity. Nursing staff (n = 273) from a medium to large Australian hospital completed a self-report survey. Structural equation modeling found differential effects of psychological contract breach and psychological contract status, the mediating roles of engagement, job satisfaction and distress on to performance behaviors, while noting the role of individual negative affectivity. Engaging nurses is critical to both their in-role and discretionary performance behaviors. Reducing negative impacts, particularly those due to breaking promises and unfair processes, while protecting the nurses' mental health, enables performance levels to be maintained. This study demonstrates that nurses' general perceptions of their employment relationship impacted their in-role and discretionary performance behaviors, especially through the mechanism of engagement. The complexity of managing nurses is highlighted by those variables that enacted positive impacts via engagement as versus the variables that led to distress and acted as brakes on performance, as well as the impact of the negative affectivity trait of the nurses.

A Parsimonious Taxonomy of The Newly Retired: Spousal and Disability Combinations Shape Part or Complete Retirement.

The inadequate classification of retiree sub-groups ultimately results in misaligned policy. To generate sets of sub-groups that may be appropriately targeted for policy and interventions, variables are used that reflect the social structure of retirees, particularly the options of partial and complete retirement, marital status, gender, as well as the retirement status of the spouse, where relevant, and disability. Three sets of longitudinal Australian data were combined, each reflecting a four-year period (2003-2007, 2007-2011, 2011-2015) during which the individuals aged 45 to 69 retired (n = 1179). A multiway frequency analysis was performed to develop an inductive, combinatorial model of retirement from work. The resulting parsimonious taxonomy of sub-groups of the newly retired reflected main effects and interactions of key social-structural variables. Notably, a key driver of the pattern of results was that couples tend to coordinate their retirement behavior in both the decision to retire and form of retirement. Non-partnered retirees were more likely to be women. Disability was also a driver of retirement for non-partnered retirees, regardless of gender. Identifying sub-groups based on combinations of retiree characteristics can better inform policy design, appropriate health promotion interventions and potential specific triggers for enacting those policies. Overall, marital status, spousal retirement behavior and disability may each present a more useful basis for a taxonomy of retirement than more individually oriented age- and wealth-based systems.

The New and Key Roles for Psychological Contract Status and Engagement in Predicting Various Performance Behaviors of Nurses.

The study examines the impact of the psychological contract (PC), including the often-studied PC breach in addition to the novel approach of PC status, as predictors of performance among nurses, mediated by engagement, job satisfaction, and psychological distress. A sample of 177 nurses and midwives from a medium to a large hospital in Australia completed a self-report questionnaire. Structural equation modelling was used to determine associations between the predictors (i.e., negative affectivity (NA), PC breach, PC status)), mediating variables (i.e., engagement, job satisfaction, and psychological distress), and three types of performance behaviors: organizational citizenship behavior for the individual, for the organization (OCBI, OCBO) and in-role behavior (IRB) simultaneously. Specifically, psychological contract status positively predicted engagement, whereas breach negatively predicted engagement and positively predicted job satisfaction. NA positively predicted distress, and distress negatively predicted OCBO and IRB. Lastly, engagement positively predicted job satisfaction, OCBI, OCBO, and IRB. The findings indicate that psychological contract status may predict engagement (and in turn, performance) over and above psychological contract breach, and thus this novel construct should be examined further. The importance of engagement for predicting the performance behaviors and mental health of nurses may also offer new insights.

Breast Density Knowledge in a Screening Mammography Population Exposed to Density Notification.

OBJECTIVE: Women are increasingly informed about their breast density due to state density reporting laws. However, accuracy of personal breast density knowledge remains unclear. We compared self-reported with clinically assessed breast density and assessed knowledge of density implications and feelings about future screening. METHODS: From December 2017 to January 2020, we surveyed women aged 40 to 74 years without prior breast cancer, with a normal screening mammogram in the prior year, and ≥1 recorded breast density measures in four Breast Cancer Surveillance Consortium registries with density reporting laws. We measured agreement between self-reported and BI-RADS breast density categorized as "ever-dense" if heterogeneously or extremely dense within the past 5 years or "never-dense" otherwise, knowledge of dense breast implications, and feelings about future screening. RESULTS: Survey participation was 28% (1,528 of 5,408), and 59% (896 of 1,528) of participants had ever-dense breasts. Concordance between self-report versus clinical density was 76% (677 of 896) among women with ever-dense breasts and 14% (89 of 632) among women with never-dense breasts, and 34% (217 of 632) with never-dense breasts reported being told they had dense breasts. Desire for supplemental screening was more frequent among those who reported having dense breasts 29% (256 of 893) or asked to imagine having dense breasts 30% (152 of 513) versus those reporting nondense breasts 15% (15 of 102) (P = .003, P = .002, respectively). Women with never-dense breasts had 6.3-fold higher odds (95% confidence interval:3.39-11.80) of accurate knowledge in states reporting density to all compared to states reporting only to women with dense breasts. DISCUSSION: Standardized communications of breast density results to all women may increase density knowledge and are needed to support informed screening decisions.

Women's Breast Cancer Screening Confidence by Screening Modality and Breast Density: A Breast Cancer Surveillance Consortium Survey Study.

Objective: Little is known about women's confidence in their breast cancer screening. We sought to characterize breast cancer screening confidence by imaging modality and clinically assessed breast density. Materials and Methods: We undertook a cross-sectional survey of women ages 40-74 years who received digital mammography (DM), digital breast tomosynthesis (DBT), and/or breast magnetic resonance imaging (MRI) with a normal screening exam in the prior year. The main outcome was women's confidence (Very, Somewhat, A little, Not at all) in their breast cancer screening detecting any cancer. Multivariable logistic regression identified correlates of being very confident in breast cancer screening by screening modality group: Group 1) DM vs. DBT and Group 2) DM or DBT alone vs. with supplemental MRI. Results: Overall, 2329 of 7439 (31.3%) invitees participated, with 30%-61% being very confident in their screening across modality and density subgroups. Having dense versus nondense breasts was associated with lower odds of being very confident (Group 1: odds ratio [OR]: 0.58; 95% confidence interval [CI]: 0.46-0.79; Group 2: OR: 0.56; 95% CI: 0.40-0.79). There were no differences by modality within Group 1, but for Group 2, women undergoing MRI had higher odds of being very confident (OR: 1.69; 95% CI: 1.21-2.37). Other correlates of greater screening confidence were as follows: Group 1-being offered a screening test choice and cost not influencing modality received, and Group 2-decision satisfaction and worry. Conclusions: Women with dense breasts had lower screening confidence regardless of screening modality and those undergoing MRI had higher confidence regardless of density. The importance of informing women about screening options is underscored by observed associations between screening choice, decision satisfaction, and screening confidence. ClinicalTrials.gov: NCT02980848.

Unsustainable: COVID-19 Demands Increased Support for Radiologists.

Life is sometimes described as a complex tapestry and progress is not linear, but twisted like stitches, contributing to the final fabric. When tension arises, the most recent stitches unravel first. The COVID-19 pandemic is pulling back the thread of humanity's progress. Those disproportionately affected by the pandemic's tension are those whose progress is most recent and, therefore most tenuous, including women in medicine. The profession of radiology, recently acknowledged by practice leaders as experiencing burnout as a very significant problem (Parikh et al., 2020 [1]), is rapidly facing an untenable situation.

Breast Cancer: A Lifestyle Medicine Approach.

Breast cancer is the most common female cancer diagnosis in the United States (excluding skin cancers), and the second leading cause of female cancer death. This article highlights the role that lifestyle plays in primary breast cancer prevention, breast cancer treatment, and tertiary breast cancer prevention. Current data regarding the benefits of a predominantly plant-based diet in combination with physical activity and maintenance of a healthy body weight will be reviewed. The evidenced-based patient-focused recommendations developed by the World Cancer Research Fund/American Institute for Cancer Research will be discussed in the context of an overall lifestyle strategy. It is our hope that this publication empowers clinicians to provide patients with personalized cancer-protective lifestyle prescriptions.

Strategies to Identify Women at High Risk of Advanced Breast Cancer During Routine Screening for Discussion of Supplemental Imaging.

IMPORTANCE: Federal legislation proposes requiring that screening mammography reports to practitioners and women incorporate breast density information and that women with dense breasts discuss supplemental imaging with their practitioner given their increased risk of interval breast cancer. Instead of discussing supplemental imaging with all women with dense breasts, it may be more efficient to identify women at high risk of advanced breast cancer who may benefit most from supplemental imaging. OBJECTIVE: To identify women at high risk of advanced breast cancer to target woman-practitioner discussions about the need for supplemental imaging. DESIGN, SETTING, AND PARTICIPANTS: This prospective cohort study assessed 638 856 women aged 40 to 74 years who had 1 693 163 screening digital mammograms taken at Breast Cancer Surveillance Consortium (BCSC) imaging facilities from January 3, 2005, to December 31, 2014. Data analysis was performed from October 10, 2018, to March 20, 2019. EXPOSURES: Breast Imaging Reporting and Data System (BI-RADS) breast density and BCSC 5-year breast cancer risk. MAIN OUTCOMES AND MEASURES: Advanced breast cancer (stage IIB or higher) within 12 months of screening mammography; high advanced cancer rates (≥0.61 cases per 1000 mammograms) defined as the top 25th percentile of advanced cancer rates, and discussions per potential advanced cancer prevented. RESULTS: A total of 638 856 women (mean [SD] age, 56.5 [8.9] years) were included in the study. Women with dense breasts (heterogeneously or extremely dense) accounted for 47.0% of screened women and 60.0% of advanced cancers. Low advanced cancer rates (<0.61 per 1000 mammograms) occurred in 34.5% of screened women with dense breasts. High advanced breast cancer rates occurred in women with heterogeneously dense breasts and a 5-year risk of 2.5% or higher (6.0% of screened women) and those with extremely dense breasts and a 5-year risk of 1.0% or higher (6.5% of screened women). Density-risk subgroups at high advanced cancer risk comprised 12.5% of screened women and 27.1% of advanced cancers. Density-risk subgroups had the fewest supplemental imaging discussions per potential advanced cancer prevented compared with a strategy based on dense breasts (1097 vs 1866 discussions). Women with heterogeneously dense breasts and a 5-year risk less than 1.67% (21.7% of screened women) had high rates of false-positive short-interval follow-up recommendation without undergoing supplemental imaging. CONCLUSIONS AND RELEVANCE: The findings suggest that breast density notification should be combined with breast cancer risk so women at highest risk for advanced cancer are targeted for supplemental imaging discussions and women at low risk are not. BI-RADS breast density combined with BCSC 5-year risk may offer a more efficient strategy for supplemental imaging discussions than targeting all women with dense breasts.

Women's experiences and preferences regarding breast imaging after completing breast cancer treatment.

BACKGROUND: After treatment for breast cancer, most women receive an annual surveillance mammography to look for subsequent breast cancers. Supplemental breast MRI is sometimes used in addition to mammography despite the lack of clinical evidence for it. Breast imaging after cancer treatment is an emotionally charged experience, an important part of survivorship care, and a topic about which limited patient information exists. We assessed women's experiences and preferences about breast cancer surveillance imaging with the goal of determining where gaps in care and knowledge could be filled. PARTICIPANTS AND METHODS: We conducted six focus groups with a convenience sample of 41 women in California, North Carolina, and New Hampshire (USA). Participants were aged 38-75 years, had experienced stage 0-III breast cancer within the previous 5 years, and had completed initial treatment. We used inductive thematic analysis to identify key themes from verbatim transcripts. RESULTS: Women reported various types and frequencies of surveillance imaging and a range of surveillance imaging experiences and preferences. Many women experienced discomfort during breast imaging and anxiety related to the examination, primarily because they feared subsequent cancer detection. Women reported trust in their providers and relied on providers for imaging decision-making. However, women wanted more information about the treatment surveillance transition to improve their care. CONCLUSION: There is significant opportunity in breast cancer survivorship care to improve women's understanding about breast cancer surveillance imaging and to provide enhanced support to them at the time their initial treatment ends and at the time of surveillance imaging examinations.

The patient voice in research-evolution of a role.

PLAIN ENGLISH SUMMARY: Engaging patients in research studies is becoming more common because it makes research and its results more relevant for patients. It is important to understand the best ways for patients and researchers to work together. Patients who are included as active partners in research can provide useful input on what it is like to work on a research team but very little has been written about this from the patient's perspective. As patient partners and researchers on a breast cancer study, we share our experience to develop a patient-centered project and the inclusion of patient collaborators as scientific experts. Over time, the role of the patient partner has developed to include unanticipated roles and responsibilities. We use our experience to share how the patient voice can affect the execution of a research study and to provide a model for meaningfully engaging patients in research. ABSTRACT: Engaging patients in research studies is becoming more common because it makes research and its results more relevant for patients. It is important to understand the best ways for patients and researchers to work together. Patients who are included as active partners in research can provide useful input on what it is like to work on a research team but very little has been written about this from the patient's perspective. As patient partners and researchers on a breast cancer study, we share our experience to develop a patient-centered project and the inclusion of patient collaborators as scientific experts. Over time, the role of the patient partner has developed to include unanticipated roles and responsibilities. We use our experience to share how the patient voice can affect the execution of a research study and to provide a model for meaningfully engaging patients in research.