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1.  Patients Who Share Transparent Visit Notes With Others: Characteristics, Risks, and Benefits 
Inviting patients to read their primary care visit notes may improve communication and help them engage more actively in their health care. Little is known about how patients will use the opportunity to share their visit notes with family members or caregivers, or what the benefits might be.
Our goal was to evaluate the characteristics of patients who reported sharing their visit notes during the course of the study, including their views on associated benefits and risks.
The OpenNotes study invited patients to access their primary care providers’ visit notes in Massachusetts, Pennsylvania, and Washington. Pre- and post-intervention surveys assessed patient demographics, standardized measures of patient-doctor communication, sharing of visit notes with others during the study, and specific health behaviors reflecting the potential benefits and risks of offering patients easy access to their visit notes.
More than half (55.43%, 2503/4516) of the participants who reported viewing at least one visit note would like the option of letting family members or friends have their own Web access to their visit notes, and 21.70% (980/4516) reported sharing their visit notes with someone during the study year. Men, and those retired or unable to work, were significantly more likely to share visit notes, and those sharing were neither more nor less concerned about their privacy than were non-sharers. Compared to participants who did not share clinic notes, those who shared were more likely to report taking better care of themselves and taking their medications as prescribed, after adjustment for age, gender, employment status, and study site.
One in five OpenNotes patients shared a visit note with someone, and those sharing Web access to their visit notes reported better adherence to self-care and medications. As health information technology systems increase patients’ ability to access their medical records, facilitating access to caregivers may improve perceived health behaviors and outcomes.
PMCID: PMC4260006  PMID: 25405911
open access to information; caregivers; health behavior; information sharing
2.  A Framework for Evaluating Diagnostic Discordance in Pathology Discovered During Research Studies 
Little is known about the frequency of discordant diagnoses identified during research.
To describe diagnostic discordance identified during research and apply a newly designed research framework for investigating discordance.
Breast biopsy cases (N =407) from registries in Vermont and New Hampshire were independently reviewed by a breast pathology expert. The following research framework was developed to assess those cases: (1) compare the expert review and study database diagnoses, (2) determine the clinical significance of diagnostic discordance, (3) identify and correct data errors and verify the existence of true diagnostic discrepancies, (4) consider the impact of borderline cases, and (5) determine the notification approach for verified disagreements.
Initial overall discordance between the original diagnosis recorded in our research database and a breast pathology expert was 32.2% (131 of 407). This was reduced to less than 10% after following the 5-step research framework. Detailed review identified 12 cases (2.9%) with data errors (2 in the underlying pathology registry, 3 with incomplete slides sent for expert review, and 7 with data abstraction errors). After excluding the cases with data errors, 38 cases (9.6%) among the remaining 395 had clinically meaningful discordant diagnoses (κ = 0.82; SE, 0.04; 95% confidence interval, 0.76–0.87). Among these 38 cases, 20 (53%) were considered borderline between 2 diagnoses by either the original pathologist or the expert. We elected to notify the pathology registries and facilities regarding discordant diagnoses.
Understanding the types and sources of diagnostic discordance uncovered in research studies may lead to improved scientific data and better patient care.
PMCID: PMC4146522  PMID: 24978923
3.  Gender Differences in Chronic Medical, Psychiatric, and Substance-Dependence Disorders Among Jail Inmates 
American journal of public health  2009;100(3):476-482.
We investigated whether there were gender differences in chronic medical, psychiatric, and substance-dependence disorders among jail inmates and whether substance dependence mediated any gender differences found.
We analyzed data from a nationally representative survey of 6982 US jail inmates. Weighted estimates of disease prevalence were calculated by gender for chronic medical disorders (cancer, hypertension, diabetes, arthritis, asthma, hepatitis, and cirrhosis), psychiatric disorders (depressive, bipolar, psychotic, posttraumatic stress, anxiety, and personality), and substance-dependence disorders. We conducted logistic regression to examine the relationship between gender and these disorders.
Compared with men, women had a significantly higher prevalence of all medical and psychiatric conditions (P≤.01 for each) and drug dependence (P<.001), but women had a lower prevalence of alcohol dependence (P<.001). Gender differences persisted after adjustment for sociodemographic factors and substance dependence.
Women in jail had a higher burden of chronic medical disorders, psychiatric disorders, and drug dependence than men, including conditions found more commonly in men in the general population. Thus, there is a need for targeted attention to the chronic medical, psychiatric, and drug-treatment needs of women at risk for incarceration, both in jail and after release.
PMCID: PMC2820077  PMID: 19696388
4.  The MPATH-Dx reporting schema for melanocytic proliferations and melanoma 
The histologic diagnosis of melanoma and nevi can be subject to discordance and errors, potentially leading to inappropriate treatment and harm. Diagnostic terminology is not standardized, creating confusion for providers and patients and challenges for investigators.
We sought to describe the development of a pathology reporting form for more precise research on melanoma and a diagnostic-treatment mapping tool for improved patient care and consistency in treatment.
Three dermatopathologists independently reviewed melanocytic lesions randomly selected from a dermatopathology database. Melanocytic Pathology Assessment Tool and Hierarchy for Diagnosis (MPATH-Dx) reporting schema evolved from iterative case review and form revision.
Differences in diagnostic thresholds, interpretation, and nomenclature contributed to development of the MPATH-Dx histology reporting form, which groups lesions by similarities in histogenesis and degrees of atypia. Because preliminary results indicate greater agreement regarding suggested treatments than for specific diagnoses, the diverse terminologies of the MPATH-Dx histology reporting form were stratified by commonalities of treatments in the MPATH-Dx diagnostic-treatment mapping scheme.
Without transformative advances in diagnostic paradigms, the interpretation of melanocytic lesions frequently remains subjective.
The MPATH-Dx diagnostic-treatment mapping scheme could diminish confusion for those receiving reports by categorizing diverse nomenclature into a hierarchy stratified by suggested management interventions.
PMCID: PMC3992990  PMID: 24176521
diagnosis; diagnostic errors; discordance; dysplasia; melanoma; nevi; observer variability
5.  Online Access to Doctors' Notes: Patient Concerns About Privacy 
Offering patients online access to medical records, including doctors’ visit notes, holds considerable potential to improve care. However, patients may worry about loss of privacy when accessing personal health information through Internet-based patient portals. The OpenNotes study provided patients at three US health care institutions with online access to their primary care doctors’ notes and then collected survey data about their experiences, including their concerns about privacy before and after participation in the intervention.
To identify patients’ attitudes toward privacy when given electronic access to their medical records, including visit notes.
The design used a nested cohort study of patients surveyed at baseline and after a 1-year period during which they were invited to read their visit notes through secure patient portals. Participants consisted of 3874 primary care patients from Beth Israel Deaconess Medical Center (Boston, MA), Geisinger Health System (Danville, PA), and Harborview Medical Center (Seattle, WA) who completed surveys before and after the OpenNotes intervention. The measures were patient-reported levels of concern regarding privacy associated with online access to visit notes.
32.91% of patients (1275/3874 respondents) reported concerns about privacy at baseline versus 36.63% (1419/3874 respondents) post-intervention. Baseline concerns were associated with non-white race/ethnicity and lower confidence in communicating with doctors, but were not associated with choosing to read notes or desire for continued online access post-intervention (nearly all patients with notes available chose to read them and wanted continued access). While the level of concern among most participants did not change during the intervention, 15.54% (602/3874 respondents, excluding participants who responded “don’t know”) reported more concern post-intervention, and 12.73% (493/3874 respondents, excluding participants who responded “don’t know”) reported less concern.
When considering online access to visit notes, approximately one-third of patients had concerns about privacy at baseline and post-intervention. These perceptions did not deter participants from accessing their notes, suggesting that the benefits of online access to medical records may outweigh patients’ perceived risks to privacy.
PMCID: PMC3785972  PMID: 24072335
electronic medical records; patient access to records; patient portals; privacy; consumer health informatics; personal health records
6.  Opportunity Lost: End-of-Life Discussions in Cancer Patients Who Die in the Hospital 
End-of-life discussions are associated with decreased use of life-sustaining treatments in patients dying of cancer in the outpatient setting, but little is known about discussions that take place during terminal hospitalizations.
To determine the proportion of patients assessed by the clinical team to have decisional capacity on admission, how many of these patients participated or had a surrogate participate in a discussion about end-of-life care, and whether patient participation was associated with treatments received.
Retrospective review.
Adult patients with advanced cancer who died in the hospital between January 1, 2004 and December 31, 2007.
Of the 145 inpatients meeting inclusion criteria, 115 patients (79%) were documented to have decisional capacity on admission. Among these patients, 46 (40%) were documented to lose decisional capacity prior to an end-of-life discussion and had the discussion held instead by a surrogate. Patients who had surrogate participation in the end-of-life discussions were more likely to receive mechanical ventilation (56.5% vs 23.2%, P < 0.01), artificial nutrition (45.7% vs 25.0%, P = 0.03), chemotherapy (39.1% vs 5.4%, P <0.01), and intensive care unit (ICU) treatment (56.5% vs 23.2%, P <0.01) compared to patients who participated in discussions. There was no difference between palliative treatments received.
The majority of patients with advanced cancer are considered to have decisional capacity at the time of their terminal hospitalization. Many lose decisional capacity before having an end-of-life discussion and have surrogate decision-makers participate in these discussions. These patients received more aggressive life-sustaining treatments prior to death and represent a missed opportunity to improve end-of-life care.
PMCID: PMC4146526  PMID: 23169553
7.  Eye Movements as an Index of Pathologist Visual Expertise: A Pilot Study 
PLoS ONE  2014;9(8):e103447.
A pilot study examined the extent to which eye movements occurring during interpretation of digitized breast biopsy whole slide images (WSI) can distinguish novice interpreters from experts, informing assessments of competency progression during training and across the physician-learning continuum. A pathologist with fellowship training in breast pathology interpreted digital WSI of breast tissue and marked the region of highest diagnostic relevance (dROI). These same images were then evaluated using computer vision techniques to identify visually salient regions of interest (vROI) without diagnostic relevance. A non-invasive eye tracking system recorded pathologists’ (N = 7) visual behavior during image interpretation, and we measured differential viewing of vROIs versus dROIs according to their level of expertise. Pathologists with relatively low expertise in interpreting breast pathology were more likely to fixate on, and subsequently return to, diagnostically irrelevant vROIs relative to experts. Repeatedly fixating on the distracting vROI showed limited value in predicting diagnostic failure. These preliminary results suggest that eye movements occurring during digital slide interpretation can characterize expertise development by demonstrating differential attraction to diagnostically relevant versus visually distracting image regions. These results carry both theoretical implications and potential for monitoring and evaluating student progress and providing automated feedback and scanning guidance in educational settings.
PMCID: PMC4118873  PMID: 25084012
8.  Challenges in DCIS Risk Communication and Decision-Making: Report from an American Cancer Society and National Cancer Institute Workshop 
In September 2010, the American Cancer Society and National Cancer Institute convened a conference to review current issues in DCIS risk communication and decision-making and to identify directions for future research. Specific topics included patient and healthcare provider knowledge and attitudes about DCIS and its treatment, how to explain DCIS to patients given the heterogeneity of the disease, consideration of nomenclature changes, and the utility of decision tools/aids. This report describes the proceedings of the workshop in the context of the current literature and discusses future directions. Evidence suggests that there is lack of clarity about the implications and risks of a diagnosis of DCIS, among patients, providers and researchers. Research is needed to understand better the biology and mechanisms of the progression of DCIS to invasive breast cancer and the factors which predict those subtypes of DCIS which do not progress, as well as efforts to improve communication and informed decision-making surrounding DCIS.
PMCID: PMC4112288  PMID: 22488610
9.  Screening for Breast Cancer 
Breast cancer screening in community practices may be different from that in randomized controlled trials. New screening modalities are becoming available.
To review breast cancer screening, especially in the community and to examine evidence about new screening modalities.
Data Sources and Study Selection
English-language articles of randomized controlled trials assessing effectiveness of breast cancer screening were reviewed, as well as meta-analyses, systematic reviews, studies of breast cancer screening in the community, and guidelines. Also, studies of newer screening modalities were assessed.
Data Synthesis
All major US medical organizations recommend screening mammography for women aged 40 years and older. Screening mammography reduces breast cancer mortality by about 20% to 35% in women aged 50 to 69 years and slightly less in women aged 40 to 49 years at 14 years of follow-up. Approximately 95% of women with abnormalities on screening mammograms do not have breast cancer with variability based on such factors as age of the woman and assessment category assigned by the radiologist. Studies comparing full-field digital mammography to screen film have not shown statistically significant differences in cancer detection while the impact on recall rates (percentage of screening mammograms considered to have positive results) was unclear. One study suggested that computer-aided detection increases cancer detection rates and recall rates while a second larger study did not find any significant differences. Screening clinical breast examination detects some cancers missed by mammography, but the sensitivity reported in the community is lower (28% to 36%) than in randomized trials (about 54%). Breast self-examination has not been shown to be effective in reducing breast cancer mortality, but it does increase the number of breast biopsies performed because of false-positives. Magnetic resonance imaging and ultrasound are being studied for screening women at high risk for breast cancer but are not recommended for screening the general population. Sensitivity of magnetic resonance imaging in high-risk women has been found to be much higher than that of mammography but specificity is generally lower. Effect of the magnetic resonance imaging on breast cancer mortality is not known. A balanced discussion of possible benefits and harms of screening should be undertaken with each woman.
In the community, mammography remains the main screening tool while the effectiveness of clinical breast examination and self-examination are less. New screening modalities are unlikely to replace mammography in the near future for screening the general population.
PMCID: PMC3149836  PMID: 15755947
10.  Screening Mammograms by Community Radiologists: Variability in False-Positive Rates 
Previous studies have shown that the agreement among radiologists interpreting a test set of mammograms is relatively low. However, data available from real-world settings are sparse. We studied mammographic examination interpretations by radiologists practicing in a community setting and evaluated whether the variability in false-positive rates could be explained by patient, radiologist, and/or testing characteristics.
We used medical records on randomly selected women aged 40–69 years who had had at least one screening mammographic examination in a community setting between January 1, 1985, and June 30, 1993. Twenty-four radiologists interpreted 8734 screening mammograms from 2169 women. Hierarchical logistic regression models were used to examine the impact of patient, radiologist, and testing characteristics. All statistical tests were two-sided.
Radiologists varied widely in mammographic examination interpretations, with a mass noted in 0%–7.9%, calcification in 0%–21.3%, and fibrocystic changes in 1.6%–27.8% of mammograms read. False-positive rates ranged from 2.6% to 15.9%. Younger and more recently trained radiologists had higher false-positive rates. Adjustment for patient, radiologist, and testing characteristics narrowed the range of false-positive rates to 3.5%–7.9%. If a woman went to two randomly selected radiologists, her odds, after adjustment, of having a false-positive reading would be 1.5 times greater for the radiologist at higher risk of a false-positive reading, compared with the radiologist at lowest risk (95% highest posterior density interval [similar to a confidence interval] = 1.17 to 2.08).
Community radiologists varied widely in their false-positive rates in screening mammograms; this variability range was reduced by half, but not eliminated, after statistical adjustment for patient, radiologist, and testing characteristics. These characteristics need to be considered when evaluating false-positive rates in community mammographic examination screening.
PMCID: PMC3142994  PMID: 12237283
11.  The Association Between Obesity and Screening Mammography Accuracy 
Archives of internal medicine  2004;164(10):1140-1147.
Obesity is increasing among American women, especially as they age. The influence of obesity on the accuracy of screening mammography has not been studied extensively.
We analyzed 100622 screening mammography examinations performed on members of a nonprofit health plan. The relationship between body mass index (weight in kilograms divided by the square of height in meters) and measures of screening accuracy was assessed. Body mass index was categorized as underweight or normal weight (<25), overweight (25–29), obesity class I (30–34), and obesity classes II to III (≥35).
Compared with underweight or normal weight women, overweight and obese women were more likely to be recalled for additional tests after adjusting for important covariates, including age and breast density (overweight odds ratio [OR], 1.17; 95% confidence interval [CI], 1.11–1.23); obesity class I OR, 1.27; 95% CI, 1.19–1.35; obesity classes II–III OR, 1.31; 95% CI, 1.22–1.41). As body mass index increased, women were more likely to have lower specificity (overweight OR, 0.86; 95% CI, 0.81–0.90; obesity class I OR, 0.79; 95% CI, 0.74–0.84; and obesity classes II–III OR, 0.77; 95% CI, 0.71–0.82). No statistically significant differences were noted in sensitivity. Adjusted receiver operating characteristic analysis showed statistically significant improvement in the area under the curve (AUC) for underweight or normal weight women (AUC=0.941) vs overweight women (AUC=0.916, P=.02) and underweight or normal weight women vs obesity classes II and III women (AUC=0.904, P=.02).
Obese women had more than a 20% increased risk of having false-positive mammography results compared with underweight and normal weight women, although sensitivity was unchanged. Achieving a normal weight may improve screening mammography performance.
PMCID: PMC3143016  PMID: 15159273
12.  Communication Between Patients and Providers and Informed Decision Making 
Women with ductal carcinoma in situ (DCIS) need to comprehend the meaning of the diagnosis and the potential benefits and harms of treatment options. Full and understandable information is a requirement, not an option. However, with DCIS, as with many areas of medicine, a high level of uncertainty about the disease remains. In this article, we define informed medical decision making, review challenges to its implementation, and provide suggestions on how to improve communication with women about the diagnosis and treatment of DCIS.
PMCID: PMC3140849  PMID: 20956831
13.  Mammographers’ Perception of Women’s Breast Cancer Risk 
To understand mammographers’ perception of individual women’s breast cancer risk.
Materials and Methods
Radiologists interpreting screening mammography examinations completed a mailed survey consisting of questions pertaining to demographic and clinical practice characteristics, as well as 2 vignettes describing different risk profiles of women. Respondents were asked to estimate the probability of a breast cancer diagnosis in the next 5 years for each vignette. Vignette responses were plotted against mean recall rates in actual clinical practice.
The survey was returned by 77% of eligible radiologists. Ninety-three percent of radiologists overestimated risk in the vignette involving a 70-year-old woman; 96% overestimated risk in the vignette involving a 41-year-old woman. Radiologists who more accurately estimated breast cancer risk were younger, worked full-time, were affiliated with an academic medical center, had fellowship training, had fewer than 10 years experience interpreting mammograms, and worked more than 40% of the time in breast imaging. However, only age was statistically significant. No association was found between radiologists’ risk estimate and their recall rate.
U.S. radiologists have a heightened perception of breast cancer risk.
PMCID: PMC3131742  PMID: 15951455
perception; risk; pretest probability
14.  Radiologists' Attitudes and Use of Mammography Audit Reports 
Academic radiology  2010;17(6):752-760.
Rationale and Objectives
The U.S. Mammography Quality Standards Act (MQSA) mandates medical audits to track breast cancer outcomes data associated with interpretive performance. The objectives of our study were to assess the content and style of audits and examine use of, attitudes toward, and perceptions of the value that radiologists' have regarding mandated medical audits.
Materials and Methods
Radiologists (n=364) at mammography registries in seven U.S. states contributing data to the Breast Cancer Surveillance Consortium (BCSC) were invited to participate. We examined radiologists' demographic characteristics, clinical experience, and use, attitudes and perceived value of audit reports from results of a self-administered survey. Information on the content and style of BCSC audits provided to radiologists and facilities were obtained from site investigators. Radiologists' characteristics were analyzed according to whether or not they self-reported receiving regular mammography audit reports. Latent class analysis was used to classify radiologists' individual perceptions of audit reports into overall probabilities of having “favorable,” “less favorable,” “neutral,” or “unfavorable” attitudes toward audit reports.
Seventy-one percent (257 of 364) of radiologists completed the survey; two radiologists did not complete the audit survey question, leaving 255 for the final study cohort. Most survey respondents received regular audits (91%), paid close attention to their audit numbers (83%), found the reports valuable (87%), and felt that audit reports prompted them to improve interpretative performance (75%). Variability was noted in the style, target audience and frequency of reports provided by the BCSC registries. One in four radiologists reported that if congress mandates more intensive auditing requirements but does not provide funding to support this regulation they may stop interpreting mammograms.
Radiologists working in breast imaging generally had favorable opinions of audit reports, which were mandated by Congress; however, almost one in ten radiologists reported that they did not receive audits.
PMCID: PMC2894027  PMID: 20457418
mammography; quality assurance; medical audit
16.  Comparison of Clinical Interpretation with Visual Assessment and Quantitative Coronary Angiography in Patients Undergoing Percutaneous Coronary Intervention in Contemporary Practice: The Assessing Angiography (A2) Project 
Circulation  2013;127(17):1793-1800.
Studies conducted decades ago described substantial disagreement and errors in physicians’ angiographic interpretation of coronary stenosis severity. Despite the potential implications of such findings, no large-scale efforts to measure or improve clinical interpretation were subsequently made.
Methods & Results
We compared clinical interpretation of stenosis severity in coronary lesions with an independent assessment using quantitative coronary angiography (QCA) in 175 randomly selected patients undergoing elective percutaneous coronary intervention (PCI) at 7 U.S. hospitals in 2011. To assess agreement, we calculated mean difference in percent diameter stenosis between clinical interpretation and QCA and a Cohen’s weighted kappa statistic. Of 216 treated lesions, median percent diameter stenosis was 80.0% (Q1 and Q3, 80.0 and 90.0%) with 213 (98.6%) assessed as ≥70%. Mean difference in percent diameter stenosis between clinical interpretation and QCA was +8.2 ± 8.4%, reflecting an average higher percent diameter stenosis by clinical interpretation (P<0.001). A weighted kappa of 0.27 (95% CI, 0.18 to 0.36) was found between the 2 measurements. Of 213 lesions considered ≥70% by clinical interpretation, 56 (26.3%) were <70% by QCA though none was <50%. Differences between the 2 measurements were largest for intermediate lesions by QCA (50 to <70%) with variation existing across sites.
Physicians tended to assess coronary lesions treated with PCI as more severe than measurements by QCA. Almost all treated lesions were ≥70% by clinical interpretation, while approximately a quarter were <70% by QCA. These findings suggest opportunities to improve clinical interpretation of coronary angiography.
PMCID: PMC3908681  PMID: 23470859
Health policy and outcomes research; Quality improvement; Coronary angiography; Percutaneous coronary intervention; Quantitative coronary angiography
17.  Attitudes Toward Participation in Breast Cancer Randomized Clinical Trials in the African American Community 
Cancer nursing  2007;30(4):261-269.
Participation of African Americans in research trials is low. Understanding the perspectives of African American patients toward participation in clinical trials is essential to understanding the disparities in participation rates compared with whites. A qualitative study was conducted to discover attitudes of the African American community regarding willingness to participate in breast cancer screening and randomized clinical trials. Six focus groups consisting of 8 to 11 African American women (N = 58), aged 30 to 65, were recruited from local churches. Focus group sessions involved a 2-hour audiotaped discussion facilitated by 2 moderators. A breast cancer randomized clinical trial involving an experimental breast cancer treatment was discussed to identify the issues related to willingness to participate in such research studies. Six themes surrounding willingness to participate in randomized clinical trials were identified: (1) Significance of the research topic to the individual and/or community; (2) level of trust in the system; (3) understanding of the elements of the trial; (4) preference for “natural treatments” or “religious intervention” over medical care; (5) cost-benefit analysis of incentives and barriers; and (6) openness to risk versus a preference for proven treatments. The majority (80%) expressed willingness or open-mindedness to the idea of participating in the hypothetical trial. Lessons learned from this study support the selection of a culturally diverse research staff and can guide the development of research protocols, recruitment efforts, and clinical procedures that are culturally sensitive and relevant.
PMCID: PMC3908682  PMID: 17666974
African American; Breast cancer; Clinical trials; Focus group study
18.  Inviting Patients to Read Their Doctors’ Notes: A Quasi-experimental Study and a Look Ahead 
Annals of internal medicine  2012;157(7):461-470.
Little information exists about what primary care physicians (PCPs) and patients experience if patients are invited to read their doctors’ office notes.
To evaluate the effect on doctors and patients of facilitating patient access to visit notes over secure Internet portals.
Quasi-experimental trial of PCPs and patient volunteers in a year-long program that provided patients with electronic links to their doctors’ notes.
Primary care practices at Beth Israel Deaconess Medical Center (BIDMC) in Massachusetts, Geisinger Health System (GHS) in Pennsylvania, and Harborview Medical Center (HMC) in Washington.
105 PCPs and 13 564 of their patients who had at least 1 completed note available during the intervention period.
Portal use and electronic messaging by patients and surveys focusing on participants’ perceptions of behaviors, benefits, and negative consequences.
11 797 of 13 564 patients with visit notes available opened at least 1 note (84% at BIDMC, 92% at GHS, and 47% at HMC). Of 5391 patients who opened at least 1 note and completed a postintervention survey, 77% to 87% across the 3 sites reported that open notes helped them feel more in control of their care; 60% to 78% of those taking medications reported increased medication adherence; 26% to 36% had privacy concerns; 1% to 8% reported that the notes caused confusion, worry, or offense; and 20% to 42% reported sharing notes with others. The volume of electronic messages from patients did not change. After the intervention, few doctors reported longer visits (0% to 5%) or more time addressing patients’ questions outside of visits (0% to 8%), with practice size having little effect; 3% to 36% of doctors reported changing documentation content; and 0% to 21% reported taking more time writing notes. Looking ahead, 59% to 62% of patients believed that they should be able to add comments to a doctor’s note. One out of 3 patients believed that they should be able to approve the notes’ contents, but 85% to 96% of doctors did not agree. At the end of the experimental period, 99% of patients wanted open notes to continue and no doctor elected to stop.
Only 3 geographic areas were represented, and most participants were experienced in using portals. Doctors volunteering to participate and patients using portals and completing surveys may tend to offer favorable feedback, and the response rate of the patient surveys (41%) may further limit generalizability.
Patients accessed visit notes frequently, a large majority reported clinically relevant benefits and minimal concerns, and virtually all patients wanted the practice to continue. With doctors experiencing no more than a modest effect on their work lives, open notes seem worthy of widespread adoption.
Primary Funding Source
The Robert Wood Johnson Foundation, the Drane Family Fund, the Richard and Florence Koplow Charitable Foundation, and the National Cancer Institute.
PMCID: PMC3908866  PMID: 23027317
19.  Acute traumatic subdural hematoma: Current mortality and functional outcomes in adult patients at a Level I trauma center 
Existing data on outcomes following subdural hematoma have provided limited information on medical complications and functional outcomes. Mortality rates previously reported range from 22% to 66%.
This is a retrospective cohort study of prospectively collected data from a trauma registry in Washington State from 2005 through 2008. Patients were categorized by surgical evacuation status with the hypothesis that those undergoing evacuation represented a more severe injury.
The 1,427 patients included in the study had a mean age of 58 years, and most of them were male (63%). Glasgow Coma Scale (GCS) score on presentation was greater than 12 in 58%; the average Injury Severity Score (ISS) was 27.5. Mean length of stay was 9.6 days (range, 1–110), with 40% spending 2 or more days in the intensive care unit. Twenty-eight percent experienced medical complications. At discharge, 94% had GCS score of 13 or greater. Independence with expression, feeding, and locomotion at discharge was noted for 92%, 81%, and 43%, respectively. Inpatient mortality was 16% and did not differ significantly between the evacuated group (15%) and the nonevacuated group (17%).
This large cohort of patients with acute traumatic subdural hematoma demonstrated a lower mortality rate than those of previous reports, including among patients requiring surgical evacuation (J Trauma Acute Care Surg. 2012;73:1348–1352).
Level of Evidence
Epidemiologic study, level III.
PMCID: PMC3908893  PMID: 23117390
Acute subdural hematoma; traumatic brain injury; subdural hematoma; mortality
20.  Development of an electronic breast pathology database in a community health system 
Health care systems rely on electronic patient data, yet access to breast tissue pathology results continues to depend on interpreting dictated free-text reports.
The objective was to develop a method to electronically search and categorize pathologic diagnoses of patients’ breast tissue specimens from dictated free-text pathology reports in a large health system for multiple users including clinicians.
A database integrating existing patient-level administrative and clinical information for breast cancer screening and diagnostic services and a web-based application for comprehensive searching of pathology reports were developed by a health system team led by pathologists. The Breast Pathology Assessment Tool and Hierarchy for Diagnosis (BPATH-Dx) provided search terms and guided electronic transcription of diagnoses from text fields on breast pathology clinical reports to standardized categories.
Breast pathology encounters in the pathology database were matched with administrative data for 7332 women with breast tissue specimens obtained from an initial procedure in the health system from January 1, 2008 to December 31, 2011. Sequential queries of the pathology text based on BPATH-Dx categorized biopsies according to their worst pathological diagnosis, as is standard practice. Diagnoses ranged from invasive breast cancer (23.3%), carcinoma in situ (7.8%), atypical lesions (6.39%), proliferative lesions without atypia (27.9%), and nonproliferative lesions (34.7%), and were further classified into subcategories. A random sample of 5% of reports that were manually reviewed indicated 97.5% agreement.
Sequential queries of free-text pathology reports guided by a standardized assessment tool in conjunction with a web-based search application provide an efficient and reproducible approach to accessing nonmalignant breast pathology diagnoses. This method advances the use of pathology data and electronic health records to improve health care quality, patient care, outcomes, and research.
PMCID: PMC4141424  PMID: 25191625
Breast biopsy; breast pathology; electronic data systems
21.  Inviting Patients to Read Their Doctors' Notes: Patients and Doctors Look Ahead 
Annals of internal medicine  2011;155(12):811-819.
Little is known about what primary care physicians (PCPs) and patients would expect if patients were invited to read their doctors' office notes.
To explore attitudes toward potential benefits or harms if PCPs offered patients ready access to visit notes.
The PCPs and patients completed surveys before joining a voluntary program that provided electronic links to doctors' notes.
Primary care practices in 3 U.S. states.
Participating and nonparticipating PCPs and adult patients at primary care practices in Massachusetts, Pennsylvania, and Washington.
Doctors' and patients' attitudes toward and expectations of open visit notes, their ideas about the potential benefits and risks, and demographic characteristics.
110 of 114 participating PCPs (96%), 63 of 140 nonparticipating PCPs (45%), and 37 856 of 90 826 patients (42%) completed surveys. Overall, 69% to 81% of participating PCPs across the 3 sites and 92% to 97% of patients thought open visit notes were a good idea, compared with 16% to 33% of nonparticipating PCPs. Similarly, participating PCPs and patients generally agreed with statements about potential benefits of open visit notes, whereas nonparticipating PCPs were less likely to agree. Among participating PCPs, 74% to 92% anticipated improved communication and patient education, in contrast to 45% to 67% of nonparticipating PCPs. More than one half of participating PCPs (50% to 58%) and most nonparticipating PCPs (88% to 92%) expected that open visit notes would result in greater worry among patients; far fewer patients concurred (12% to 16%). Thirty-six percent to 50% of participating PCPs and 83% to 84% of nonparticipating PCPs anticipated more patient questions between visits. Few PCPs (0% to 33%) anticipated increased risk for lawsuits. Patient enthusiasm extended across age, education, and health status, and 22% anticipated sharing visit notes with others, including other doctors.
Access to electronic patient portals is not widespread, and participation was limited to patients using such portals. Response rates were higher among participating PCPs than nonparticipating PCPs; many participating PCPs had small patient panels.
Among PCPs, opinions about open visit notes varied widely in terms of predicting the effect on their practices and benefits for patients. In contrast, patients expressed considerable enthusiasm and few fears, anticipating both improved understanding and more involvement in care. Sharing visit notes has broad implications for quality of care, privacy, and shared accountability.
PMCID: PMC3772715  PMID: 22184688
22.  Short-Term Outcomes of Screening Mammography Using Computer-Aided Detection 
Annals of internal medicine  2013;158(8):580-587.
Computer-aided detection (CAD) has rapidly diffused into screening mammography practice despite limited and conflicting data on its clinical effect.
To determine associations between CAD use during screening mammography and the incidence of ductal carcinoma in situ (DCIS) and invasive breast cancer, invasive cancer stage, and diagnostic testing.
Retrospective cohort study.
Medicare program.
Women aged 67 to 89 years having screening mammography between 2001 and 2006 in U.S. SEER (Surveillance, Epidemiology and End Results) regions (409 459 mammograms from 163 099 women).
Incident DCIS and invasive breast cancer within 1 year after mammography, invasive cancer stage, and diagnostic testing within 90 days after screening among women without breast cancer.
From 2001 to 2006, CAD prevalence increased from 3.6% to 60.5%. Use of CAD was associated with greater DCIS incidence (adjusted odds ratio [OR], 1.17 [95% CI, 1.11 to 1.23]) but no difference in invasive breast cancer incidence (adjusted OR, 1.00 [CI, 0.97 to 1.03]). Among women with invasive cancer, CAD was associated with greater likelihood of stage I to II versus III to IV cancer (adjusted OR, 1.27 [CI, 1.14 to 1.41]). In women without breast cancer, CAD was associated with increased odds of diagnostic mammography (adjusted OR, 1.28 [CI, 1.27 to 1.29]), breast ultrasonography (adjusted OR, 1.07 [CI, 1.06 to 1.09]), and breast biopsy (adjusted OR, 1.10 [CI, 1.08 to 1.12]).
Short follow-up for cancer stage, potential unmeasured confounding, and uncertain generalizability to younger women.
Use of CAD during screening mammography among Medicare enrollees is associated with increased DCIS incidence, the diagnosis of invasive breast cancer at earlier stages, and increased diagnostic testing among women without breast cancer.
Primary Funding Source
Center for Healthcare Policy and Research, University of California, Davis.
PMCID: PMC3772716  PMID: 23588746
23.  Impact of an Educational Intervention Designed to Reduce Unnecessary Recall During Screening Mammography 
Academic radiology  2012;19(9):1114-1120.
To describe the impact of a tailored web based educational program designed to reduce excessive screening mammography recall.
Radiologists enrolled in one of four mammography registries in the U.S. were invited to take part and were randomly assigned to receive the intervention or to serve as controls. The controls were offered the intervention at the end of the study, and data collection included an assessment of their clinical practice as well. The intervention provided each radiologist with individual audit data for their sensitivity, specificity, recall rate, PPV and cancer detection rates compared to national benchmarks and peer-comparisons for the same measures; profiled breast cancer risk in each radiologist’s respective patient populations to illustrate how low breast cancer risk is in population based settings, and evaluated the possible impact of medical malpractice concerns on recall rates. Participants’ recall rates from actual practice were evaluated for three time periods: the nine months before the intervention was delivered to the Intervention Group (baseline period), the nine months between the Intervention and Control Groups (T1) and nine months after Completion of the intervention by the Controls (T2). Logistic regression models examining the probability a mammogram was recalled included indication of intervention versus control and the time periods (baseline, T1, T2). Interactions between the groups and time period were also included to determine if the association between time period and the probability of a positive result differed across groups.
Thirty-one radiologists who completed the CME were included in the adjusted model comparing radiologists in the Intervention Group (n=22) to radiologists who completed the intervention in the Control Group (n=9). At T1 the Intervention Group had 12% higher odds of a positive mammogram compared to the Controls, after controlling for baseline (OR=1.12, 95% CI=1.00-1.27, p=0.0569). At T2 a similar association was found; however, it was not statistically significant (OR=1.10, 95% CI=0.96-1.25). No associations were found among radiologists in the Controls when comparing those who completed the CME (n=9) to those who did not (n=10). In addition, we found no associations between time-period and recall rate among radiologists who set realistic goals.
In conclusion, our study resulted in a null effect, which may indicate a single one-hour intervention is not adequate to change excessive recall among radiologists who undertook the intervention we were testing.
PMCID: PMC3638784  PMID: 22727623
24.  Radiologists’ ability to accurately estimate and compare their own interpretative mammography performance to their peers 
To determine if U.S. radiologists accurately estimate their own interpretive performance of screening mammography and how they compare their performance to their peers’.
Materials and Methods
174 radiologists from six Breast Cancer Surveillance Consortium (BCSC) registries completed a mailed survey between 2005 and 2006. Radiologists’ estimated and actual recall, false positive, and cancer detection rates and positive predictive value of biopsy recommendation (PPV2) for screening mammography were compared. Radiologists’ ratings of their performance as lower, similar, or higher than their peers were compared to their actual performance. Associations with radiologist characteristics were estimated using weighted generalized linear models. The study was approved by the institutional review boards of the participating sites, informed consent was obtained from radiologists, and procedures were HIPAA compliant.
While most radiologists accurately estimated their cancer detection and recall rates (74% and 78% of radiologists), fewer accurately estimated their false positive rate and PPV2 (19% and 26%). Radiologists reported having similar (43%) or lower (31%) recall rates and similar (52%) or lower (33%) false positive rates compared to their peers, and similar (72%) or higher (23%) cancer detection rates and similar (72%) or higher (38%) PPV2. Estimation accuracy did not differ by radiologists’ characteristics except radiologists who interpret ≤1,000 mammograms annually were less accurate at estimating their recall rates.
Radiologists perceive their performance to be better than it actually is and at least as good as their peers. Radiologists have particular difficulty estimating their false positive rates and PPV2.
PMCID: PMC3691059  PMID: 22915414
25.  Stage-specific breast cancer incidence rates among participants and non-participants of a population-based mammographic screening program 
The Norwegian Breast Cancer Screening Program was rolled out county by county over the course of a decade, from 1996 to 2005, and now encompasses all Norwegian women aged 50–69 years. We aim to compare DCIS and stage-specific invasive breast cancer incidence rates among participants, non-participants, and women not yet invited to the screening program over this entire implementation period. We estimate stage-specific breast tumor incidence rates for 640,347 women 50–69 years of age invited to the screening program between 1996 and 2007. We compare incidence rates and stage distribution among women diagnosed with breast cancer who were invited and participated, invited but not participated, and women not yet invited to the screening program using two-sided Chi-squared tests to determine statistical significance between groups. The incidence of ductal carcinoma in situ (DCIS) was 3.0 times higher and invasive breast cancer was 1.5 times higher for invited participants compared to invited non-participants (p < 0.001). While the incidence of Stage I cancer was two times higher among participants compared to non-participants (p < 0.001), the incidences of Stages III and IV cancer were two and three times lower, respectively, among participants compared to non-participants (p < 0.001 for both). No significant differences in stage-specific incidence or treatment utilization rates were observed between invited non-participants and not yet invited women, except for stage IV cancers, which were detected at a higher rate among women who were not yet invited (7.5 vs. 4.6 %, p = 0.001). Compared with women invited who did not participate, participants in the screening program are more likely to be diagnosed with DCIS and early stage invasive breast cancer and are less likely to be diagnosed with advanced stage breast cancer. More research is required to determine whether these differences in stage-specific incidences among invited participants and non-participants are associated with differences in mortality rates.
PMCID: PMC3751801  PMID: 22833199
Breast cancer; Population screening; Screening mammography; Cancer incidence; Stage-specific incidence; Mastectomy rate

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