Native American Youth Citizen Scientists Uncovering Community Health and Food Security Priorities.

Citizen science based on principles of community-based participatory research involves the co-creation of research among citizens and professional researchers in substantive aspects of scientific inquiry including equitable contributions to governance, research questions, data collection, analysis, application of findings, and dissemination. This article reports on a citizen science project conducted by 12 youth in the Karuk Tribe collaborating with university scientists. The youth participated in a research leadership development program conducted in their community located in rural/remote northern California. The youth led a community health and food security assessment survey using a mobile application tool (n = 212). They uncovered community concerns about the health of residents and healthfulness of food choices in schools, as well as a significant difference related to confidence in making healthy food choices between those who are and are not physically active. The Tribe applied the study findings with youth in alignment with cultural values and practices investing in developing community gardens, improving school food quality, and promoting native food practices that incorporate physical activities such as hiking, gathering, and preserving food. This study offers lessons for research collaborations among citizen scientists from communities underrepresented in health research and university scientists.

Are providers prepared for genomic medicine: interpretation of Direct-to-Consumer genetic testing (DTC-GT) results and genetic self-efficacy by medical professionals.

BACKGROUND: Precision medicine is set to deliver a rich new data set of genomic information. However, the number of certified specialists in the United States is small, with only 4244 genetic counselors and 1302 clinical geneticists. We conducted a national survey of 264 medical professionals to evaluate how they interpret genetic test results, determine their confidence and self-efficacy of interpreting genetic test results with patients, and capture their opinions and experiences with direct-to-consumer genetic tests (DTC-GT). METHODS: Participants were grouped into two categories, genetic specialists (genetic counselors and clinical geneticists) and medical providers (primary care, internists, physicians assistants, advanced nurse practitioners, etc.). The survey (full instrument can be found in the Additional file 1) presented three genetic test report scenarios for interpretation: a genetic risk for diabetes, genomic sequencing for symptoms report implicating a potential HMN7B: distal hereditary motor neuropathy VIIB diagnosis, and a statin-induced myopathy risk. Participants were also asked about their opinions on DTC-GT results and rank their own perceived level of preparedness to review genetic test results with patients. RESULTS: The rates of correctly interpreting results were relatively high (74.4% for the providers compared to the specialist's 83.4%) and age, prior genetic test consultation experience, and level of trust assigned to the reports were associated with higher correct interpretation rates. The self-selected efficacy and the level of preparedness to consult on a patient's genetic results were higher for the specialists than the provider group. CONCLUSION: Specialists remain the best group to assist patients with DTC-GT, however, primary care providers may still provide accurate interpretation of test results when specialists are unavailable.

Patient Commitment to Health (PACT-Health) in the Heart Failure Population: A Focus Group Study of an Active Communication Framework for Patient-Centered Health Behavior Change.

BACKGROUND: Over 6 million Americans have heart failure, and 1 in 8 deaths included heart failure as a contributing cause in 2016. Lifestyle changes and adherence to diet and exercise regimens are important in limiting disease progression. Health coaching and public commitment are two interactive communication strategies that may improve self-management of heart failure. OBJECTIVE: This study aimed to conduct patient focus groups to gain insight into how best to implement health coaching and public commitment strategies within the heart failure population. METHODS: Focus groups were conducted in two locations. We studied 2 patients in Oakland, California, and 5 patients in Los Angeles, California. Patients were referred by local cardiologists and had to have a diagnosis of chronic heart failure. We used a semistructured interview tool to explore several patient-centered themes including medication adherence, exercise habits, dietary habits, goals, accountability, and rewards. We coded focus group data using the a priori coding criteria for these domains. RESULTS: Medication adherence barriers included regimen complexity, forgetfulness, and difficulty coping with side effects. Participants reported that they receive little instruction from care providers on appropriate exercise and dietary habits. They also reported personal and social obstacles to achieving these objectives. Participants were in favor of structured goal setting, use of online social networks, and financial rewards as a means of promoting health lifestyles. Peers were viewed as better motivating agents than family members. CONCLUSIONS: An active communication framework involving dissemination of diet- and exercise-related health information, structured goal setting, peer accountability, and financial rewards appears promising in the management of heart failure.

A Novel Stakeholder Engagement Approach for Patient-centered Outcomes Research.

INTRODUCTION/OBJECTIVES: The engagement of patients and other stakeholders is a critical element in the design of patient-centered outcomes research studies. However, methodology for scalable engagement in research management particularly activities such as operationalization of principles and setting of priorities is not well-developed. The objective of this study is to describe a novel approach for scalable stakeholder engagement in research aligned with the Patient-Centered Outcomes Research Institute (PCORI) engagement principles, which was evaluated in a national clinical data research network. MATERIALS AND METHODS: Patient, patient advocate, clinician, and researcher stakeholders were recruited from clinical sites, as well as social media sites related to the 3 conditions of focus, heart failure, obesity, and Kawasaki disease. The engagement strategy was designed, implemented, and mapped to the PCORI engagement principles. Evaluation included internal assessment and quantitative measures of online engagement. RESULTS: We operationalized the PCORI principles with 12 stakeholder engagement strategies and convened stakeholder advisory boards and online research prioritization panels to determine research priorities in a rigorous, deliberative process. A total of 46 advisors (20 patients) and 339 panelists (159 patients) actively participated. There were not significant differences between patients and clinicians in level of online engagement. Nonetheless, while patients reported a slightly greater challenge with following online discussion, they overall had a more favorable opinion about use of the online format. DISCUSSION/CONCLUSION: An efficient way to engage large numbers of representative stakeholders in research is a necessary first step to assure the public of trustworthy use of data networks for health research. This paper describes a comprehensive approach to engagement in patient-centered outcomes research management that informs ongoing development of rigorous methodologies in this area.

Psychosocial outcomes in active treatment through survivorship.

OBJECTIVE: The objective of the study is to understand potential differences in psychosocial outcomes from active treatment to survivorship. METHODS: Using the Medical Expenditure Panel Survey Experiences with Cancer Survivorship Supplement (n = 1360), we examined and compared psychosocial outcomes among respondents in active treatment with survivors by year(s) since treatment ended. Survey-weighted regression models were used to test associations between year(s) since treatment and depressive symptoms (Patient Health Questionnaire-2), psychological distress (K6), and cancer-specific worry related to recurrence. RESULTS: Unadjusted estimates showed no significant differences in depressive symptoms or psychological distress between those in active treatment and cancer survivors at any time posttreatment. In contrast, the prevalence of cancer-specific worry was lowest among survivors more than 5 years since treatment (10%), slightly higher among those with less than 1 year since treatment (15%), and highest among those in active treatment (32%). In models controlled for sociodemographic and health-related covariates, the year(s) since treatment ended was inversely associated with the odds of cancer-specific worry but was not associated with depressive symptoms or psychological distress. CONCLUSIONS: In this population-based sample, worry about cancer recurrence may diminish with years since treatment ended, while depressive symptoms and distress are persistent across the trajectory. These findings highlight unmet psychosocial needs among cancer survivors and demonstrate the importance of targeted interventions across the survivorship continuum.

Factors affecting willingness to share electronic health data among California consumers.

BACKGROUND: Robust technology infrastructure is needed to enable learning health care systems to improve quality, access, and cost. Such infrastructure relies on the trust and confidence of individuals to share their health data for healthcare and research. Few studies have addressed consumers' views on electronic data sharing and fewer still have explored the dual purposes of healthcare and research together. The objective of the study is to explore factors that affect consumers' willingness to share electronic health information for healthcare and research. METHODS: This study involved a random-digit dial telephone survey of 800 adult Californians conducted in English and Spanish. Logistic regression was performed using backward selection to test for significant (p-value ≤ 0.05) associations of each explanatory variable with the outcome variable. RESULTS: The odds of consent for electronic data sharing for healthcare decreased as Likert scale ratings for EHR impact on privacy worsened, odds ratio (OR) = 0.74, 95% CI [0.60, 0.90]; security, OR = 0.80, 95% CI [0.66, 0.98]; and quality, OR = 0.59, 95% CI [0.46-0.75]. The odds of consent for sharing for research was greater for those who think EHR will improve research quality, OR = 11.26, 95% CI [4.13, 30.73]; those who value research benefit over privacy OR = 2.72, 95% CI [1.55, 4.78]; and those who value control over research benefit OR = 0.49, 95% CI [0.26, 0.94]. CONCLUSIONS: Consumers' choices about electronically sharing health information are affected by their attitudes toward EHRs as well as beliefs about research benefit and individual control. Design of person-centered interventions utilizing electronically collected health information, and policies regarding data sharing should address these values of importance to people. Understanding of these perspectives is critical for leveraging health data to support learning health care systems.

Perspectives of community-based organizations on digital health equity interventions: a key informant interview study.

BACKGROUND: Health and healthcare are increasingly dependent on internet and digital solutions. Medically underserved communities that experience health disparities are often those who are burdened by digital disparities. While digital equity and digital health equity are national priorities, there is limited evidence about how community-based organizations (CBOs) consider and develop interventions. METHODS: We conducted key informant interviews in 2022 purposively recruiting from health and welfare organizations engaged in digital equity work. Nineteen individuals from 13 organizations serving rural and/or urban communities from the local to national level participated in semi-structured interviews via Zoom regarding their perspectives on digital health equity interventions. Directed content analysis of verbatim interview transcripts was conducted to identify themes. RESULTS: Themes emerged at individual, organizational, and societal levels. Individual level themes included potential benefits from digital health equity, internet access challenges, and the need for access to devices and digital literacy. Organizational level themes included leveraging community assets, promising organizational practices and challenges. For the societal level, the shifting complexity of the digital equity ecosystem, policy issues, and data for needs assessment and evaluation were described. Several example case studies describing these themes were provided. DISCUSSION AND CONCLUSION: Digital health equity interventions are complex, multi-level endeavors. Clear elucidation of the individual, organizational, and societal level factors that may impact digital health equity interventions are necessary to understanding if and how CBOs participate in such initiatives. This study presents unique perspectives directly from CBOs driving programs in this new arena of digital health equity.

Development of a privacy and security policy framework for a multistate comparative effectiveness research network.

Comparative effectiveness research (CER) conducted in distributed research networks (DRNs) is subject to different state laws and regulations as well as institution-specific policies intended to protect privacy and security of health information. The goal of the Scalable National Network for Effectiveness Research (SCANNER) project is to develop and demonstrate a scalable, flexible technical infrastructure for DRNs that enables near real-time CER consistent with privacy and security laws and best practices. This investigation began with an analysis of privacy and security laws and state health information exchange (HIE) guidelines applicable to SCANNER participants from California, Illinois, Massachusetts, and the Federal Veteran's Administration. A 7-member expert panel of policy and technical experts reviewed the analysis and gave input into the framework during 5 meetings held in 2011-2012. The state/federal guidelines were applied to 3 CER use cases: safety of new oral hematologic medications; medication therapy management for patients with diabetes and hypertension; and informational interventions for providers in the treatment of acute respiratory infections. The policy framework provides flexibility, beginning with a use-case approach rather than a one-size-fits-all approach. The policies may vary depending on the type of patient data shared (aggregate counts, deidentified, limited, and fully identified datasets) and the flow of data. The types of agreements necessary for a DRN may include a network-level and data use agreements. The need for flexibility in the development and implementation of policies must be balanced with responsibilities of data stewardship.

The ACTIVATE Digital Health Pilot Program for Diabetes and Hypertension in an Underserved and Rural Community.

BACKGROUND: Community health centers and patients in rural and agricultural communities struggle to address diabetes and hypertension in the face of health disparities and technology barriers. The stark reality of these digital health disparities were highlighted during the coronavirus disease 2019 pandemic. OBJECTIVES: The objective of the ACTIVATE (Accountability, Coordination, and Telehealth in the Valley to Achieve Transformation and Equity) project was to codesign a platform for remote patient monitoring and program for chronic illness management that would address these disparities and offer a solution that fit the needs and context of the community. METHODS: ACTIVATE was a digital health intervention implemented in three phases: community codesign, feasibility assessment, and a pilot phase. Pre- and postintervention outcomes included regularly collected hemoglobin A1c (A1c) for participants with diabetes and blood pressure for those with hypertension. RESULTS: Participants were adult patients with uncontrolled diabetes and/or hypertension (n = 50). Most were White and Hispanic or Latino (84%) with Spanish as a primary language (69%), and the mean age was 55. There was substantial adoption and use of the technology: over 10,000 glucose and blood pressure measures were transmitted using connected remote monitoring devices over a 6-month period. Participants with diabetes achieved a mean reduction in A1c of 3.28 percentage points (standard deviation [SD]: 2.81) at 3 months and 4.19 percentage points (SD: 2.69) at 6 months. The vast majority of patients achieved an A1c in the target range for control (7.0-8.0%). Participants with hypertension achieved reductions in systolic blood pressure of 14.81 mm Hg (SD: 21.40) at 3 months and 13.55 mm Hg (SD: 23.31) at 6 months, with smaller reductions in diastolic blood pressure. The majority of participants also reached target blood pressure (less than 130/80). CONCLUSION: The ACTIVATE pilot demonstrated that a codesigned solution for remote patient monitoring and chronic illness management delivered by community health centers can overcome digital divide barriers and show positive health outcomes for rural and agricultural residents.

Family and personal history of cancer in the All of Us research program for precision medicine.

The All of Us (AoU) Research Program is making available one of the largest and most diverse collections of health data in the US to researchers. Using the All of Us database, we evaluated family and personal histories of five common types of cancer in 89,453 individuals, comparing these data to 24,305 participants from the 2015 National Health Interview Survey (NHIS). Comparing datasets, we found similar family cancer history (33%) rates, but higher personal cancer history in the AoU dataset (9.2% in AoU vs. 5.11% in NHIS), Methodological (e.g. survey-versus telephone-based data collection) and demographic variability may explain these between-data differences, but more research is needed.

Patient and researcher stakeholder preferences for use of electronic health record data: a qualitative study to guide the design and development of a platform to honor patient preferences.

OBJECTIVE: This qualitative study aimed to understand patient and researcher perspectives regarding consent and data-sharing preferences for research and a patient-centered system to manage consent and data-sharing preferences. MATERIALS AND METHODS: We conducted focus groups with patient and researcher participants recruited from three academic health centers via snowball sampling. Discussions focused on perspectives on the use of electronic health record (EHR) data for research. Themes were identified through consensus coding, starting from an exploratory framework. RESULTS: We held two focus groups with patients (n = 12 patients) and two with researchers (n = 8 researchers). We identified two patient themes (1-2), one theme common to patients and researchers (3), and two researcher themes (4-5). Themes included (1) motivations for sharing EHR data, (2) perspectives on the importance of data-sharing transparency, (3) individual control of personal EHR data sharing, (4) how EHR data benefits research, and (5) challenges researchers face using EHR data. DISCUSSION: Patients expressed a tension between the benefits of their data being used in studies to benefit themselves/others and avoiding risk by limiting data access. Patients resolved this tension by acknowledging they would often share their data but wanted greater transparency on its use. Researchers expressed concern about incorporating bias into datasets if patients opted out. CONCLUSIONS: A research consent and data-sharing platform must consider two competing goals: empowering patients to have more control over their data and maintaining the integrity of secondary data sources. Health systems and researchers should increase trust-building efforts with patients to engender trust in data access and use.

Exploration of the e-patient phenomenon in nursing informatics.

The availability of health information on the Internet has equalized opportunities for knowledge between patients and their health care providers, creating a new phenomenon called the e-patient. E-patients use technology to actively participate in their health care and assume higher levels of responsibility for their own health and wellness. This phenomenon has implications for nursing informatics research related to e-patients and potential collaboration with practitioners in developing a collective wisdom. Nursing informatics can use the data, information, knowledge, and wisdom (DIKW) framework to understand how e-patients and clinicians may achieve this collective wisdom. Nurse informaticists can use constructivism and Gadamerian hermeneutics to bridge each stage of this framework to illustrate the fundamentals of patient and clinician interactions and commonality of language to achieve a collective wisdom. Examining the e-patient phenomenon will help nurse informaticists evaluate, design, develop, and determine the effectiveness of information systems used by e-patients. The Internet can facilitate a partnership between the patient and clinician and cultivate a collective wisdom, enhanced by collaboration between nurse informatics and e-patients.

A Structured Review and Evaluation of Android Mobile Applications for Yoga Support.

Although there are hundreds of mobile yoga apps in the app market space, the quality and usefulness of these apps have not been systematically tested. We conducted a structured quality evaluation of apps from the Google Play store, applying the validated Mobile Application Rating Scale (MARS) by two independent raters. 18 out of 250 apps were identified for evaluation after applying inclusion/exclusion criteria. The mean MARS score is 4.11 (out of 5) with SD = 0.38. There was high interrater reliability (ICC = .88; 95% CI 0.85-0.91). Apps performed well on functionality and aesthetics. However, there is much room for improvement in information and engagement. Designers and researchers should focus on improving user engagement and building the evidence base for informational content provided in apps.

Informatics-enabled citizen science to advance health equity.

The COVID-19 pandemic has once again highlighted the ubiquity and persistence of health inequities along with our inability to respond to them in a timely and effective manner. There is an opportunity to address the limitations of our current approaches through new models of informatics-enabled research and clinical practice that shift the norm from small- to large-scale patient engagement. We propose augmenting our approach to address health inequities through informatics-enabled citizen science, challenging the types of questions being asked, prioritized, and acted upon. We envision this democratization of informatics that builds upon the inclusive tradition of community-based participatory research (CBPR) as a logical and transformative step toward improving individual, community, and population health in a way that deeply reflects the needs of historically marginalized populations.

Trust and shared decision-making among individuals with multiple myeloma: A qualitative study.

BACKGROUND: Multiple myeloma (MM) is an incurable cancer with complex treatment options. Trusting patient-clinician relationships are essential to promote effective shared decision-making that aligns best clinical practices with patient values and preferences. This study sought to shed light on the development of trust between MM patients and clinicians. METHODS: Nineteen individual semi-structured interviews were conducted with MM patients within 2 years of initial diagnosis or relapse for this qualitative study. Interviews were recorded and transcripts were coded thematically. RESULTS: We identified three main themes: (1) externally validated trust describes patients' predisposition to trust or distrust clinicians based on factors outside of patient-clinician interactions; (2) internally validated trust describes how patients develop trust based on interactions with specific clinicians. Internally validated trust is driven primarily by clinician communication practices that demonstrate competence, responsiveness, listening, honesty, and empathy; and (3) trust in relation to shared decision-making describes how patients relate the feeling of trust, or lack thereof, to the process of shared decision-making. CONCLUSION: Many factors contribute to the development of trust between MM patients and clinicians. While some are outside of clinicians' control, others derive from clinician behaviors and interpersonal communication skills. These findings suggest the possibility that trust can be enhanced through communication training or shared decision-making tools that emphasize relational communication. Given the important role trust plays in shared decision-making, clinicians working with MM patients should prioritize establishing positive, trusting relationships.

Psychometric Properties of the Preparedness Assessment for the Transition Home After Stroke Instrument.

PURPOSE: The aim of this study was to evaluate psychometric properties of the Preparedness Assessment for the Transition Home After Stroke (PATH-s), a novel instrument to assess stroke caregiver commitment and capacity. The PATH-s instrument can be obtained at www.rehabnurse.org/pathtool. DESIGN: The design of this study is cross-sectional. METHODS: The PATH-s, the Preparedness for Caregiving Scale (PCS), the Patient Health Questionnaire, the Perceived Stress Scale, and the Global Health Scale were self-reported from a convenience sample of caregiver-stroke survivor dyads (n = 183) during inpatient rehabilitation. RESULTS: Exploratory factor analysis revealed eight factors underlying the PATH-s structure. The PATH-s Cronbach's alpha of .90 demonstrated criterion-related validity with the PCS (r = .79, p < .01). Both the PATH-s and the PCS were negatively correlated with the Patient Health Questionnaire (r = -.26 and -.27, respectively; p < .01) and the Perceived Stress Scale (r = -.12 and -.15, respectively; p > .05) and positively correlated with the Global Health Scale (r = -.46 and .46, respectively; p < .01), indicating convergent validity. CONCLUSIONS: The PATH-s demonstrates excellent internal consistency and satisfactory criterion-related and convergent validity. CLINICAL RELEVANCE: The PATH-s may be used to assess the risk/needs of caregivers over time.

Infliximab versus second intravenous immunoglobulin for treatment of resistant Kawasaki disease in the USA (KIDCARE): a randomised, multicentre comparative effectiveness trial.

BACKGROUND: Although intravenous immunoglobulin (IVIG) is effective therapy for Kawasaki disease, 10-20% of patients have recrudescent fever as a sign of persistent inflammation and require additional treatment. We aimed to compare infliximab with a second infusion of IVIG for treatment of resistant Kawasaki disease. METHODS: In this multicentre comparative effectiveness trial, patients (aged 4 weeks to 17 years) with IVIG resistant Kawasaki disease and fever at least 36 h after completion of their first IVIG infusion were recruited from 30 hospitals across the USA. Patients were randomly assigned (1:1) to second IVIG (2 g/kg over 8-12 h) or intravenous infliximab (10 mg/kg over 2 h without premedication), by using a randomly permuted block randomisation design with block size of two or four. Patients with fever 24 h to 7 days following completion of first study treatment crossed over to receive the other study treatment. The primary outcome measure was resolution of fever at 24 h after initiation of study treatment with no recurrence of fever attributed to Kawasaki disease within 7 days post-discharge. Secondary outcome measures included duration of fever from enrolment, duration of hospitalisation after randomisation, and changes in markers of inflammation and coronary artery Z score. Efficacy was analysed in participants who received treatment and had available outcome values. Safety was analysed in all randomised patients who did not withdraw consent. This clinical trial is registered with ClinicalTrials.gov, NCT03065244. FINDINGS: Between March 1, 2017, and Aug 31, 2020, 105 patients were randomly assigned to treatment and 103 were included in the intention-to-treat population (54 in the infliximab group, 49 in the second IVIG group). Two patients randomised to infliximab did not receive allocated treatment. The primary outcome was met by 40 (77%) of 52 patients in the infliximab group and 25 (51%) of 49 patients in the second IVIG infusion group (odds ratio 0·31, 95% CI 0·13-0·73, p=0·0076). 31 patients with fever beyond 24 h received crossover treatment: nine (17%) in the infliximab group received second IVIG and 22 (45%) in second IVIG group received infliximab (p=0·0024). Three patients randomly assigned to infliximab and two to second IVIG with fever beyond 24h did not receive crossover treatment. Mean fever days from enrolment was 1·5 (SD 1·4) for the infliximab group and 2·5 (2·5) for the second IVIG group (p=0·014). Mean hospital stay was 3·2 days (2·1) for the infliximab group and 4·5 days (2·5) for the second IVIG group (p<0·001). There was no difference between treatment groups for markers of inflammation or coronary artery outcome. 24 (44%) of 54 patients in the infliximab group and 33 (67%) of 49 in the second IVIG group had at least one adverse event. A drop in haemoglobin concentration of at least 2g/dL was seen in 19 (33%) of 58 patients who received IVIG as either their first or second study treatment (three of whom required transfusion) and in three (7%) of 43 who received only infliximab (none required transfusion; p=0·0028). Haemolytic anaemia was the only serious adverse events deemed definitely or probably related to study treatment, and was reported in nine (15%) of 58 patients who received IVIG as either their first or second study treatment and none who received infliximab only. INTERPRETATION: Infliximab is a safe, well tolerated, and effective treatment for patients with IVIG resistant Kawasaki disease, and results in shorter duration of fever, reduced need for additional therapy, less severe anaemia, and shorter hospitalisation compared with second IVIG infusion. FUNDING: Patient Centered Outcomes Research Institute.

Privacy-protecting, reliable response data discovery using COVID-19 patient observations.

OBJECTIVE: To utilize, in an individual and institutional privacy-preserving manner, electronic health record (EHR) data from 202 hospitals by analyzing answers to COVID-19-related questions and posting these answers online. MATERIALS AND METHODS: We developed a distributed, federated network of 12 health systems that harmonized their EHRs and submitted aggregate answers to consortia questions posted at https://www.covid19questions.org. Our consortium developed processes and implemented distributed algorithms to produce answers to a variety of questions. We were able to generate counts, descriptive statistics, and build a multivariate, iterative regression model without centralizing individual-level data. RESULTS: Our public website contains answers to various clinical questions, a web form for users to ask questions in natural language, and a list of items that are currently pending responses. The results show, for example, that patients who were taking angiotensin-converting enzyme inhibitors and angiotensin II receptor blockers, within the year before admission, had lower unadjusted in-hospital mortality rates. We also showed that, when adjusted for, age, sex, and ethnicity were not significantly associated with mortality. We demonstrated that it is possible to answer questions about COVID-19 using EHR data from systems that have different policies and must follow various regulations, without moving data out of their health systems. DISCUSSION AND CONCLUSIONS: We present an alternative or a complement to centralized COVID-19 registries of EHR data. We can use multivariate distributed logistic regression on observations recorded in the process of care to generate results without transferring individual-level data outside the health systems.

Assessing the Quality of Electronic Data for 'Fit-for-Purpose' by Utilizing Data Profiling Techniques Prior to Conducting a Survival Analysis for Adults with Acute Lymphoblastic Leukemia.

Acute lymphoblastic leukemia affects both children and adults. Rising costs of cancer care and patient burden contribute to the need to study factors influencing outcomes. This study explored the quality of datasets generated from a clinical research institution. The 'fit-for-use' of data prior to examining survival/complications was determined through a systematic approach guided by the Weiskopf et al. 3x3 Data Quality Assessment Framework. Constructs of completeness, correctness, and currency were explored for the data dimensions of patient, variables, and time. There were 11 types of data retrieved. Sufficient data points were found for patient and variable data in each dataset (≥70% of its cells filled with patient level data). Although there was concordance between variables, we found the distribution of lab values and death data to be incorrect. There were missing values for labs ordered and death dates. Our study showed that datasets retrieved can vary, even from the same institution.