Predicting Self-Reported Social Risk in Medically Complex Adults Using Electronic Health Data.

BACKGROUND: Social barriers to health care, such as food insecurity, financial distress, and housing instability, may impede effective clinical management for individuals with chronic illness. Systematic strategies are needed to more efficiently identify at-risk individuals who may benefit from proactive outreach by health care systems for screening and referral to available social resources. OBJECTIVE: To create a predictive model to identify a higher likelihood of food insecurity, financial distress, and/or housing instability among adults with multiple chronic medical conditions. RESEARCH DESIGN AND SUBJECTS: We developed and validated a predictive model in adults with 2 or more chronic conditions who were receiving care within Kaiser Permanente Northern California (KPNC) between January 2017 and February 2020. The model was developed to predict the likelihood of a "yes" response to any of 3 validated self-reported survey questions related to current concerns about food insecurity, financial distress, and/or housing instability. External model validation was conducted in a separate cohort of adult non-Medicaid KPNC members aged 35-85 who completed a survey administered to a random sample of health plan members between April and June 2021 (n = 2820). MEASURES: We examined the performance of multiple model iterations by comparing areas under the receiver operating characteristic curves (AUCs). We also assessed algorithmic bias related to race/ethnicity and calculated model performance at defined risk thresholds for screening implementation. RESULTS: Patients in the primary modeling cohort (n = 11,999) had a mean age of 53.8 (±19.3) years, 64.7% were women, and 63.9% were of non-White race/ethnicity. The final, simplified model with 30 predictors (including utilization, diagnosis, behavior, insurance, neighborhood, and pharmacy-based variables) had an AUC of 0.68. The model remained robust within different race/ethnic strata. CONCLUSIONS: Our results demonstrated that a predictive model developed using information gleaned from the medical record and from public census tract data can be used to identify patients who may benefit from proactive social needs assessment. Depending on the prevalence of social needs in the target population, different risk output thresholds could be set to optimize positive predictive value for successful outreach. This predictive model-based strategy provides a pathway for prioritizing more intensive social risk outreach and screening efforts to the patients who may be in greatest need.

Food Insecurity and Hypoglycemia among Older Patients with Type 2 Diabetes Treated with Insulin or Sulfonylureas: The Diabetes & Aging Study.

BACKGROUND: Severe hypoglycemia is a serious adverse drug event associated with hypoglycemia-prone medications; older patients with diabetes are particularly at high risk. Economic food insecurity (food insecurity due to financial limitations) is a known risk factor for hypoglycemia; however, less is known about physical food insecurity (due to difficulty cooking or shopping for food), which may increase with age, and its association with hypoglycemia. OBJECTIVE: Study associations between food insecurity and severe hypoglycemia. DESIGN: Survey based cross-sectional study. PARTICIPANTS: Survey responses were collected in 2019 from 1,164 older (≥ 65 years) patients with type 2 diabetes treated with insulin or sulfonylureas. MAIN MEASURES: Risk ratios (RR) for economic and physical food insecurity associated with self-reported severe hypoglycemia (low blood glucose requiring assistance) adjusted for age, financial strain, HbA1c, Charlson comorbidity score and frailty. Self-reported reasons for hypoglycemia endorsed by respondents. KEY RESULTS: Food insecurity was reported by 12.3% of the respondents; of whom 38.4% reported economic food insecurity only, 21.1% physical food insecurity only and 40.5% both. Economic food insecurity and physical food insecurity were strongly associated with severe hypoglycemia (RR = 4.3; p = 0.02 and RR = 4.4; p = 0.002, respectively). Missed meals ("skipped meals, not eating enough or waiting too long to eat") was the dominant reason (77.5%) given for hypoglycemia. CONCLUSIONS: Hypoglycemia prevention efforts among older patients with diabetes using hypoglycemia-prone medications should address food insecurity. Standard food insecurity questions, which are used to identify economic food insecurity, will fail to identify patients who have physical food insecurity only.

Arrhythmia Variant Associations and Reclassifications in the eMERGE-III Sequencing Study.

BACKGROUND: Sequencing Mendelian arrhythmia genes in individuals without an indication for arrhythmia genetic testing can identify carriers of pathogenic or likely pathogenic (P/LP) variants. However, the extent to which these variants are associated with clinically meaningful phenotypes before or after return of variant results is unclear. In addition, the majority of discovered variants are currently classified as variants of uncertain significance, limiting clinical actionability. METHODS: The eMERGE-III study (Electronic Medical Records and Genomics Phase III) is a multicenter prospective cohort that included 21 846 participants without previous indication for cardiac genetic testing. Participants were sequenced for 109 Mendelian disease genes, including 10 linked to arrhythmia syndromes. Variant carriers were assessed with electronic health record-derived phenotypes and follow-up clinical examination. Selected variants of uncertain significance (n=50) were characterized in vitro with automated electrophysiology experiments in HEK293 cells. RESULTS: As previously reported, 3.0% of participants had P/LP variants in the 109 genes. Herein, we report 120 participants (0.6%) with P/LP arrhythmia variants. Compared with noncarriers, arrhythmia P/LP carriers had a significantly higher burden of arrhythmia phenotypes in their electronic health records. Fifty-four participants had variant results returned. Nineteen of these 54 participants had inherited arrhythmia syndrome diagnoses (primarily long-QT syndrome), and 12 of these 19 diagnoses were made only after variant results were returned (0.05%). After in vitro functional evaluation of 50 variants of uncertain significance, we reclassified 11 variants: 3 to likely benign and 8 to P/LP. CONCLUSIONS: Genome sequencing in a large population without indication for arrhythmia genetic testing identified phenotype-positive carriers of variants in congenital arrhythmia syndrome disease genes. As the genomes of large numbers of people are sequenced, the disease risk from rare variants in arrhythmia genes can be assessed by integrating genomic screening, electronic health record phenotypes, and in vitro functional studies. REGISTRATION: URL: https://www. CLINICALTRIALS: gov; Unique identifier; NCT03394859.

Telehealth During COVID-19 for Adults with Multiple Chronic Conditions: Associations with Self-Reported Food Insecurity and with Physical Limitations.

Background: Adults with chronic medical conditions complicated by food insecurity or physical limitations may have higher barriers to accessing telehealth implemented during the COVID-19 pandemic. Objective: To examine the relationships of self-reported food insecurity and physical limitations with changes in health care utilization and medication adherence comparing the year before (March 2019-February 2020) and the first year of the COVID-19 pandemic (April 2020-March 2021) among patients with chronic conditions insured by Medicaid or Medicare Advantage. Methods: A prospective cohort study of 10,452 Kaiser Permanente Northern California members insured by Medicaid and 52,890 Kaiser Permanente Colorado members insured by Medicare Advantage was conducted. Difference-in-differences (DID) between the pre-COVID and COVID years in telehealth versus in-person health care utilization and adherence to chronic disease medicines by food insecurity and by physical limitation status were measured. Results: Food insecurity and physical limitations were each associated with small but significantly greater shifts from in-person to telehealth. Medicare Advantage members with physical limitations also had significantly greater decline in adherence to chronic medications from year to year compared with those without physical limitations (DID from pre-COVID year to COVID year ranged from 0.7% to 3.6% greater decline by medication class, p < 0.01). Conclusions: Food insecurity and physical limitations did not present significant barriers to the transition to telehealth during the COVID pandemic. The greater decrease in medication adherence among older patients with physical limitations suggests that care systems must further address the needs of this high-risk population.

Rates of Actionable Genetic Findings in Individuals with Colorectal Cancer or Polyps Ascertained from a Community Medical Setting.

As clinical testing for Mendelian causes of colorectal cancer (CRC) is largely driven by recognition of family history and early age of onset, the rates of such findings among individuals with prevalent CRC not recognized to have these features is largely unknown. We evaluated actionable genomic findings in community-based participants ascertained by three phenotypes: (1) CRC, (2) one or more adenomatous colon polyps, and (3) control participants over age 59 years without CRC or colon polyps. These participants underwent sequencing for a panel of genes that included colorectal cancer/polyp (CRC/P)-associated and actionable incidental findings genes. Those with CRC had a 3.8% rate of positive results (pathogenic or likely pathogenic) for a CRC-associated gene variant, despite generally being older at CRC onset (mean 72 years). Those ascertained for polyps had a 0.8% positive rate and those with no CRC/P had a positive rate of 0.2%. Though incidental finding rates unrelated to colon cancer were similar for all groups, our positive rate for cardiovascular findings exceeds disease prevalence, suggesting that variant interpretation challenges or low penetrance in these genes. The rate of HFE c.845G>A (p.Cys282Tyr) homozygotes in the CRC group reinforces a previously reported, but relatively unexplored, association between hemochromatosis and CRC. These results in a general clinical population suggest that current testing strategies could be improved in order to better detect Mendelian CRC-associated conditions. These data also underscore the need for additional functional and familial evidence to clarify the pathogenicity and penetrance of variants deemed pathogenic or likely pathogenic, particularly among the actionable genes associated with cardiovascular disease.

The reckoning: The return of genomic results to 1444 participants across the eMERGE3 Network.

PURPOSE: The goal of Electronic Medical Records and Genomics (eMERGE) Phase III Network was to return actionable sequence variants to 25,084 consenting participants from 10 different health care institutions across the United States. The purpose of this study was to evaluate system-based issues relating to the return of results (RoR) disclosure process for clinical grade research genomic tests to eMERGE3 participants. METHODS: RoR processes were developed and approved by each eMERGE institution's internal review board. Investigators at each eMERGE3 site were surveyed for RoR processes related to the participant's disclosure of pathogenic or likely pathogenic variants and engagement with genetic counseling. Standard statistical analysis was performed. RESULTS: Of the 25,084 eMERGE participants, 1444 had a pathogenic or likely pathogenic variant identified on the eMERGEseq panel of 67 genes and 14 single nucleotide variants. Of these, 1077 (74.6%) participants had results disclosed, with 562 (38.9%) participants provided with variant-specific genetic counseling. Site-specific processes that either offered or required genetic counseling in their RoR process had an effect on whether a participant ultimately engaged with genetic counseling (P = .0052). CONCLUSION: The real-life experience of the multiarm eMERGE3 RoR study for returning actionable genomic results to consented research participants showed the impact of consent, method of disclosure, and genetic counseling on RoR.

Associations Between Different Self-reported Social Risks and Neighborhood-level Resources in Medicaid Patients.

BACKGROUND: Adverse social conditions are a key contributor to health disparities. Improved understanding of how social risk factors interact with each other and with neighborhood characteristics may inform efforts to reduce health disparities. DATA: A questionnaire of 29,281 patients was collected through the enrollment of Medicaid beneficiaries in a large Northern California integrated health care delivery system between May 2016 and February 2020. EXPOSURES: Living in the least resourced quartile of neighborhoods as measured by a census-tract level Neighborhood Deprivation Index score. MAIN OUTCOMES: Five self-reported social risk factors: financial need, food insecurity, housing barriers, transportation barriers, and functional limitations. RESULTS: Nearly half (42.0%) of patients reported at least 1 social risk factor; 22.4% reported 2 or more. Mean correlation coefficient between social risk factors was ρ=0.30. Multivariable logistic models controlling for age, race/ethnicity, sex, count of chronic conditions, and insurance source estimated that living in the least resourced neighborhoods was associated with greater odds of food insecurity (adjusted odds ratio=1.07, 95% confidence interval: 1.00-1.13) and transportation barriers (adjusted odds ratio=1.20, 95% confidence interval: 1.11-1.30), but not financial stress, housing barriers, or functional limitations. CONCLUSIONS AND RELEVANCE: We found that among 5 commonly associated social risk factors, Medicaid patients in a large Northern California health system typically reported only a single factor and that these factors did not correlate strongly with each other. We found only modestly greater social risk reported by patients in the least resourced neighborhoods. These results suggest that individual-level interventions should be targeted to specific needs whereas community-level interventions may be similarly important across diverse neighborhoods.

Accounting for Social Risk Does not Eliminate Race/Ethnic Disparities in COVID-19 Infection Among Insured Adults: a Cohort Study.

BACKGROUND: Communities of color have been disproportionately impacted by the COVID-19 epidemic in the USA. OBJECTIVES: To examine the relationship of self-reported social health needs with SARS-COV-2 infection by race/ethnicity among insured adults with access to high-quality health care. DESIGN AND PARTICIPANTS: A prospective cohort study of 26,741 adult Kaiser Permanente Northern California members insured by Medicaid and 58,802 Kaiser Permanente Colorado members insured by Medicare Advantage who completed social risk assessments prior to the onset of the COVID-19 pandemic. MAIN MEASURES: We examined the independent relationships of demographic, medical, and social factors on SARS-COV-2 testing and positivity between March 1, 2020, and November 30, 2020, by race/ethnicity. KEY RESULTS: Findings were similar in the two cohorts, with Latino (16-18%), Asian (11-14%), and Black (11-12%) members having the highest prevalence of SARS-COV-2 infection (ORs adjusted for age, gender, and use of interpreter ranging from 1.68 to 2.23 compared to White member [7-8%], p < 0.001). Further adjustment for medical comorbidity (e.g., obesity, diabetes, chronic lung disease); neighborhood measures; and self-reported social risk factors (e.g., trouble paying for basics, food insecurity, housing concerns, transportation barriers) did not appreciably change these results. CONCLUSIONS: Compared to non-Latino White members, members of other race/ethnic groups had higher positivity rates that were only minimally reduced after controlling for medical and neighborhood conditions and self-reported social risk factors. These findings suggest that traditional infection transmission factors such as essential work roles and household size that have disproportionate representation among communities of color may be important contributors to SARS-COV-2 infection among insured adults.

My Goals Are Not Their Goals: Barriers and Facilitators to Delivery of Patient-Centered Care for Patients with Multimorbidity.

BACKGROUND: Patient-centered care reflecting patient preferences and needs is integral to high-quality care. Individualized care is important for psychosocially complex or high-risk patients with multiple chronic conditions (i.e., multimorbidity), given greater potential risks of interventions and reduced benefits. These patients are increasingly prevalent in primary care. Few studies have examined provision of patient-centered care from the clinician perspective, particularly from primary care physicians serving in integrated, patient-centered medical home settings within the US Veterans Health Administration. OBJECTIVE: We sought to clarify facilitators and barriers perceived by primary care physicians in the Veterans Health Administration to delivering patient-centered care for high-risk or complex patients with multimorbidity. DESIGN: We conducted semi-structured telephone interviews from April to July 2020 among physicians across 20 clinical sites. Findings were analyzed with deductive content analysis based on conceptual models of patient-centeredness and hierarchical factors affecting care delivery. PARTICIPANTS: Of 23 physicians interviewed, most were female (n = 14/23, 61%), serving in hospital-affiliated outpatient clinics (n = 14/23, 61%). Participants had a mean of 21 (SD = 11.3) years of experience. KEY RESULTS: Facilitators included the following: effective physician-patient communication to individualize care, prioritize among multiple needs, and elicit goals to improve patient engagement; access to care, enabled by interdisciplinary teams, and dictating personalized care planning; effortful but worthwhile care coordination and continuity; meeting complex needs through effective teamwork; and integrating medical and non-medical care aspects in recognition of patients' psychosocial contexts. Barriers included the following: intra- and interpersonal (e.g., perceived patient reluctance to engage in care); organizational (e.g., limited encounter time); and community or policy impediments (e.g., state decisional capacity laws) to patient-centered care. CONCLUSIONS: Physicians perceived individual physician-patient interactions were the greatest facilitators or barriers to patient-centered care. Efforts to increase primary care patient-centeredness for complex or high-risk patients with multimorbidity could focus on targeting physician-patient communication and reducing interpersonal conflict.

The FamilyTalk randomized controlled trial: patient-reported outcomes in clinical genetic sequencing for colorectal cancer.

As genetics gains favor in clinical oncology, it is important to address patient concerns around confidentiality, privacy, and security of genetic information that might otherwise limit its utilization. We designed a randomized controlled trial to assess the social impact of an online educational tool (FamilyTalk) to increase family communication about colorectal cancer (CRC) risk and screening. Of 208 randomized participants, 149 (71.6%) returned six-month surveys. Overall, there was no difference in CRC screening between the study arms. Privacy and confidentiality concerns about medical and genetic information, reactions to genetic test results, and lifestyle changes did not differ between arms. Participants with pathogenic or likely pathogenic (P/LP) and variant of uncertain significance (VUS) results were more likely than those with negative results to report that the results accurately predicted their disease risks (OR 5.37, p = 0.02 and OR 3.13, p = 0.02, respectively). This trial demonstrated no evidence that FamilyTalk impacted patient-reported outcomes. Low power, due to the limited number of participants with P/LP results in the overall sample, as well as the short follow-up period, could have contributed to the null findings.

Preferences of biobank participants for receiving actionable genomic test results: results of a recontacting study.

PURPOSE: We sought to determine preferences of biobank participants whose samples were tested for clinically actionable variants but did not respond to an initial invitation to receive results. METHODS: We recontacted a subsample of participants in the Kaiser Permanente Washington/University of Washington site of the Electronic Medical Records and Genomics (eMERGE3) Network. The subsample had provided broad consent for their samples to be used for research but had not responded to one initial mailed invitation to receive their results. We sent a letter from the principal investigators with phone outreach. If no contact was made, we sent a certified letter stating our assumption that participant had actively refused. We collected reasons for declining. RESULTS: We recontacted 123 participants. Response rate was 70.7% (n = 87). Of these, 62 (71.3%) declined the offer of returned results and 25 (28.7%) consented. The most common reasons provided for refusal included not wanting to know (n = 22) and concerns about insurability (n = 28). CONCLUSION: Efforts to recontact biobank participants can yield high response. Though active refusal upon recontact was common, our data do not support assuming initial nonresponse to be refusal. Future research can work toward best practices for reconsenting, especially when clinically actionable results are possible.

Changes in Clinician Attitudes Toward Sharing Visit Notes: Surveys Pre-and Post-Implementation.

BACKGROUND: Clinician perceptions before and after inviting patients to read office notes (open notes) are unknown. OBJECTIVE: To describe changes in clinicians' attitudes about sharing notes with patients. DESIGN, PARTICIPANTS, AND MAIN MEASURE: Survey of outpatient primary and specialty care clinicians who were from a large group practice and had one or more patients who accessed notes. The main outcome was percent change (before vs. after implementation) in clinician perception that online visit notes are beneficial overall. KEY RESULTS: Of the 563 invited clinicians, 400 (71%) took the baseline survey; 295 were eligible for a follow-up survey with 192 (65%) responding (119 primary care, 47 medical specialties, 26 surgical specialties). Before implementation, 29% agreed or somewhat agreed that visit notes online are beneficial overall, increasing to 71% following implementation (p<0.001); 44% switched beliefs from bad to good idea; and 2% reported the opposite change (p<0.001). This post-implementation change was observed in all clinician categories. Compared to pre-implementation, fewer clinicians had concerns about office visits taking longer (47% pre vs. 15% post) or requiring more time for questions (71% vs. 16%), or producing notes (57% vs. 28%). Before and after implementation, most clinicians reported being less candid in documentation (65% vs. 52%) and that patients would have more control of their care (72% vs. 78%) and worry more (72% vs. 65%). CONCLUSIONS: Following implementation, more primary and specialty care clinicians agreed that sharing notes with patients online was beneficial overall. Fewer had concerns about more time needed for office visits or documentation. Most thought patients would worry more and reported being less candid in documentation.

Pandemic Uropathogenic Fluoroquinolone-resistant Escherichia coli Have Enhanced Ability to Persist in the Gut and Cause Bacteriuria in Healthy Women.

We report that fluoroquinolone-resistant Escherichia coli are found in feces of 8.8% of healthy women, with most bacteria belonging to pandemic multidrug-resistant ST131-H30R or ST1193 clonal groups. Moreover, these highly uropathogenic clonal groups demonstrate an especially prolonged gut persistence and high rate of bacteriuria without documented urinary tract infection.

Understanding What Is Most Important to Individuals with Multiple Chronic Conditions: A Qualitative Study of Patients' Perspectives.

BACKGROUND: To improve care for individuals living with multiple chronic conditions, patients and providers must align care planning with what is most important to patients in their daily lives. We have a limited understanding of how to effectively encourage communication about patients' personal values during clinical care. OBJECTIVE: To identify what patients with multiple chronic conditions describe as most important to their well-being and health. DESIGN: We interviewed individuals with multiple chronic conditions in their homes and analyzed results qualitatively, guided by grounded theory. PARTICIPANTS: A total of 31 patients (mean age 68.7 years) participated in the study, 19 of which included the participation of family members. Participants were from Kaiser Permanente Washington, an integrated health care system in Washington state. APPROACH: Qualitative analysis of home visits, which consisted of semi-structured interviews aided by photo elicitation. KEY RESULTS: Analysis revealed six domains of what patients described as most important for their well-being and health: principles, relationships, emotions, activities, abilities, and possessions. Personal values were interrelated and rarely expressed as individual values in isolation. CONCLUSIONS: The domains describe the range and types of personal values multimorbid older adults deem important to well-being and health. Understanding patients' personal values across these domains may be useful for providers when developing, sharing, and following up on care plans.

HIV Provider Documentation and Actions Following Patient Reports of At-risk Behaviors and Conditions When Identified by a Web-Based Point-of-Care Assessment.

We compared same-day provider medical record documentation and interventions addressing depression and risk behaviors before and after delivering point-of-care patient-reported outcomes (PROs) feedback for patients who self-reported clinically relevant levels of depression or risk behaviors. During the study period (1 January 2006-15 October 2010), 2289 PRO assessments were completed by HIV-infected patients. Comparing the 8 months before versus after feedback implementation, providers were more likely to document depression (74% before vs. 87% after feedback, p = 0.02) in patients with moderate-to-severe depression (n = 317 assessments), at-risk alcohol use (41 vs. 64%, p = 0.04, n = 155) and substance use (60 vs. 80%, p = 0.004, n = 212). Providers were less likely to incorrectly document good adherence among patients with inadequate adherence after feedback (42 vs. 24%, p = 0.02, n = 205). While PRO feedback of depression and adherence were followed by increased provider intervention, other domains were not. Further investigation of factors associated with the gap between awareness and intervention are needed in order to bridge this divide.

Do Patients Who Access Clinical Information on Patient Internet Portals Have More Primary Care Visits?

BACKGROUND: As health care costs alarm the nation and the debate increases about the impact of health information technologies, patients are reviewing their medical records increasingly through secure Internet portals. Important questions remain about the impact of portal use on office visits. OBJECTIVE: To evaluate whether use of patient Internet portals to access records is associated with increased primary care utilization. RESEARCH DESIGN: A prospective cohort study. SUBJECTS: Primary care patients registered on patient Internet portals, within an integrated health system serving rural Pennsylvania and an academic medical center in Boston. MEASURES: Frequency of "clinical portal use" (days/2 mo intervals over 2 y) included secure messaging about clinical issues and viewing laboratory and radiology findings. In year 2, a subset of patients also gained access to their primary care doctor's visit notes. The main outcome was number of primary care office visits. RESULTS: In the first 2 months of the 2-year period, 14% of 44,951 primary care patients engaged in clinical portal use 2 or more days per month, 31% did so 1 day per month, and the remainder had no clinical portal use. Overall, adjusted for age, sex, and chronic conditions, clinical portal use was not associated with subsequent office visits. Fewer than 0.1% of patients engaged in high levels of clinical portal use (31 or more login days in 2 mo) that were associated with 1 or more additional visits in the subsequent 2 months (months 3 and 4). However, the reverse was true: office visits led to subsequent clinical portal use. Similar trends were observed among patients with or without access to visit notes. CONCLUSIONS: Patients turn to their portals following visits, but clinical portal use does not contribute to an increase in primary care visits.

Association of Arrhythmia-Related Genetic Variants With Phenotypes Documented in Electronic Medical Records.

IMPORTANCE: Large-scale DNA sequencing identifies incidental rare variants in established Mendelian disease genes, but the frequency of related clinical phenotypes in unselected patient populations is not well established. Phenotype data from electronic medical records (EMRs) may provide a resource to assess the clinical relevance of rare variants. OBJECTIVE: To determine the clinical phenotypes from EMRs for individuals with variants designated as pathogenic by expert review in arrhythmia susceptibility genes. DESIGN, SETTING, AND PARTICIPANTS: This prospective cohort study included 2022 individuals recruited for nonantiarrhythmic drug exposure phenotypes from October 5, 2012, to September 30, 2013, for the Electronic Medical Records and Genomics Network Pharmacogenomics project from 7 US academic medical centers. Variants in SCN5A and KCNH2, disease genes for long QT and Brugada syndromes, were assessed for potential pathogenicity by 3 laboratories with ion channel expertise and by comparison with the ClinVar database. Relevant phenotypes were determined from EMRs, with data available from 2002 (or earlier for some sites) through September 10, 2014. EXPOSURES: One or more variants designated as pathogenic in SCN5A or KCNH2. MAIN OUTCOMES AND MEASURES: Arrhythmia or electrocardiographic (ECG) phenotypes defined by International Classification of Diseases, Ninth Revision (ICD-9) codes, ECG data, and manual EMR review. RESULTS: Among 2022 study participants (median age, 61 years [interquartile range, 56-65 years]; 1118 [55%] female; 1491 [74%] white), a total of 122 rare (minor allele frequency <0.5%) nonsynonymous and splice-site variants in 2 arrhythmia susceptibility genes were identified in 223 individuals (11% of the study cohort). Forty-two variants in 63 participants were designated potentially pathogenic by at least 1 laboratory or ClinVar, with low concordance across laboratories (Cohen κ = 0.26). An ICD-9 code for arrhythmia was found in 11 of 63 (17%) variant carriers vs 264 of 1959 (13%) of those without variants (difference, +4%; 95% CI, -5% to +13%; P = .35). In the 1270 (63%) with ECGs, corrected QT intervals were not different in variant carriers vs those without (median, 429 vs 439 milliseconds; difference, -10 milliseconds; 95% CI, -16 to +3 milliseconds; P = .17). After manual review, 22 of 63 participants (35%) with designated variants had any ECG or arrhythmia phenotype, and only 2 had corrected QT interval longer than 500 milliseconds. CONCLUSIONS AND RELEVANCE: Among laboratories experienced in genetic testing for cardiac arrhythmia disorders, there was low concordance in designating SCN5A and KCNH2 variants as pathogenic. In an unselected population, the putatively pathogenic genetic variants were not associated with an abnormal phenotype. These findings raise questions about the implications of notifying patients of incidental genetic findings.

Antiretroviral Therapy Adherence and Use of an Electronic Shared Medical Record Among People Living with HIV.

Electronic shared medical records (SMR) are emerging healthcare technologies that allow patients to engage in their healthcare by communicating with providers, refilling prescriptions, scheduling appointments, and viewing portions of medical records. We conducted a pre-post cohort study of HIV-positive adults who used and did not use SMR in two integrated healthcare systems. We compared the difference in antiretroviral refill adherence between SMR users and age- and sex-frequency matched non-users from the 12-month period prior to SMR useto the 12-month period starting 6 months after initiation of SMR use. High adherence was maintained among SMR users (change = -0.11 %) but declined among non-users (change = -2.05 %; p = 0.003). Among SMR users, there was a steady improvement in adherence as monthly frequency of SMR use increased (p = 0.009). SMR use, particularly more frequent use, is associated with maintaining high adherence and non-use is associated with declines in adherence over time among patients with access to these online services.

Barriers and Facilitators to Online Portal Use Among Patients and Caregivers in a Safety Net Health Care System: A Qualitative Study.

BACKGROUND: Patient portals have the potential to support self-management for chronic diseases and improve health outcomes. With the rapid rise in adoption of patient portals spurred by meaningful use incentives among safety net health systems (a health system or hospital providing a significant level of care to low-income, uninsured, and vulnerable populations), it is important to understand the readiness and willingness of patients and caregivers in safety net settings to access their personal health records online. OBJECTIVE: To explore patient and caregiver perspectives on online patient portal use before its implementation at San Francisco General Hospital, a safety net hospital. METHODS: We conducted 16 in-depth interviews with chronic disease patients and caregivers who expressed interest in using the Internet to manage their health. Discussions focused on health care experiences, technology use, and interest in using an online portal to manage health tasks. We used open coding to categorize all the barriers and facilitators to portal use, followed by a second round of coding that compared the categories to previously published findings. In secondary analyses, we also examined specific barriers among 2 subgroups: those with limited health literacy and caregivers. RESULTS: We interviewed 11 patients and 5 caregivers. Patients were predominantly male (82%, 9/11) and African American (45%, 5/11). All patients had been diagnosed with diabetes and the majority had limited health literacy (73%, 8/11). The majority of caregivers were female (80%, 4/5), African American (60%, 3/5), caregivers of individuals with diabetes (60%, 3/5), and had adequate health literacy (60%, 3/5). A total of 88% (14/16) of participants reported interest in using the portal after viewing a prototype. Major perceived barriers included security concerns, lack of technical skills/interest, and preference for in-person communication. Facilitators to portal use included convenience, health monitoring, and improvements in patient-provider communication. Participants with limited health literacy discussed more fundamental barriers to portal use, including challenges with reading and typing, personal experience with online security breaches/viruses, and distrust of potential security measures. Caregivers expressed high interest in portal use to support their roles in interpreting health information, advocating for quality care, and managing health behaviors and medical care. CONCLUSIONS: Despite concerns about security, difficulty understanding medical information, and satisfaction with current communication processes, respondents generally expressed enthusiasm about portal use. Our findings suggest a strong need for training and support to assist vulnerable patients with portal registration and use, particularly those with limited health literacy. Efforts to encourage portal use among vulnerable patients should directly address health literacy and security/privacy issues and support access for caregivers.

Patients who share transparent visit notes with others: characteristics, risks, and benefits.

BACKGROUND: 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. OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.