Telemedicine appointments are more likely to be completed than in-person healthcare appointments: a retrospective cohort study.

Objectives: Missed appointments can lead to treatment delays and adverse outcomes. Telemedicine may improve appointment completion because it addresses barriers to in-person visits, such as childcare and transportation. This study compared appointment completion for appointments using telemedicine versus in-person care in a large cohort of patients at an urban academic health sciences center. Materials and Methods: We conducted a retrospective cohort study of electronic health record data to determine whether telemedicine appointments have higher odds of completion compared to in-person care appointments, January 1, 2021, and April 30, 2023. The data were obtained from the University of South Florida (USF), a large academic health sciences center serving Tampa, FL, and surrounding communities. We implemented 1:1 propensity score matching based on age, gender, race, visit type, and Charlson Comorbidity Index (CCI). Results: The matched cohort included 87 376 appointments, with diverse patient demographics. The percentage of completed telemedicine appointments exceeded that of completed in-person care appointments by 9.2 points (73.4% vs 64.2%, P < .001). The adjusted odds ratio for telemedicine versus in-person care in relation to appointment completion was 1.64 (95% CI, 1.59-1.69, P < .001), indicating that telemedicine appointments are associated with 64% higher odds of completion than in-person care appointments when controlling for other factors. Discussion: This cohort study indicated that telemedicine appointments are more likely to be completed than in-person care appointments, regardless of demographics, comorbidity, payment type, or distance. Conclusion: Telemedicine appointments are more likely to be completed than in-person healthcare appointments.

User experience of a family health history chatbot: A quantitative analysis.

OBJECTIVE: Family health history (FHx) is an important tool in assessing one's risk towards specific health conditions. However, user experience of FHx collection tools is rarely studied. ItRunsInMyFamily.com (ItRuns) was developed to assess FHx and hereditary cancer risk. This study reports a quantitative user experience analysis of ItRuns. METHODS: We conducted a public health campaign in November 2019 to promote FHx collection using ItRuns. We used software telemetry to quantify abandonment and time spent on ItRuns to identify user behaviors and potential areas of improvement. RESULTS: Of 11,065 users who started the ItRuns assessment, 4305 (38.91%) reached the final step to receive recommendations about hereditary cancer risk. Highest abandonment rates were during Introduction (32.82%), Invite Friends (29.03%), and Family Cancer History (12.03%) subflows. Median time to complete the assessment was 636 s. Users spent the highest median time on Proband Cancer History (124.00 s) and Family Cancer History (119.00 s) subflows. Search list questions took the longest to complete (median 19.50 s), followed by free text email input (15.00 s). CONCLUSION: Knowledge of objective user behaviors at a large scale and factors impacting optimal user experience will help enhance the ItRuns workflow and improve future FHx collection.

User Preferences and Needs for Health Data Collection Using Research Electronic Data Capture: Survey Study.

BACKGROUND: Self-administered web-based questionnaires are widely used to collect health data from patients and clinical research participants. REDCap (Research Electronic Data Capture; Vanderbilt University) is a global, secure web application for building and managing electronic data capture. Unfortunately, stakeholder needs and preferences of electronic data collection via REDCap have rarely been studied. OBJECTIVE: This study aims to survey REDCap researchers and administrators to assess their experience with REDCap, especially their perspectives on the advantages, challenges, and suggestions for the enhancement of REDCap as a data collection tool. METHODS: We conducted a web-based survey with representatives of REDCap member organizations in the United States. The survey captured information on respondent demographics, quality of patient-reported data collected via REDCap, patient experience of data collection with REDCap, and open-ended questions focusing on the advantages, challenges, and suggestions to enhance REDCap's data collection experience. Descriptive and inferential analysis measures were used to analyze quantitative data. Thematic analysis was used to analyze open-ended responses focusing on the advantages, disadvantages, and enhancements in data collection experience. RESULTS: A total of 207 respondents completed the survey. Respondents strongly agreed or agreed that the data collected via REDCap are accurate (188/207, 90.8%), reliable (182/207, 87.9%), and complete (166/207, 80.2%). More than half of respondents strongly agreed or agreed that patients find REDCap easy to use (165/207, 79.7%), could successfully complete tasks without help (151/207, 72.9%), and could do so in a timely manner (163/207, 78.7%). Thematic analysis of open-ended responses yielded 8 major themes: survey development, user experience, survey distribution, survey results, training and support, technology, security, and platform features. The user experience category included more than half of the advantage codes (307/594, 51.7% of codes); meanwhile, respondents reported higher challenges in survey development (169/516, 32.8% of codes), also suggesting the highest enhancement suggestions for the category (162/439, 36.9% of codes). CONCLUSIONS: Respondents indicated that REDCap is a valued, low-cost, secure resource for clinical research data collection. REDCap's data collection experience was generally positive among clinical research and care staff members and patients. However, with the advancements in data collection technologies and the availability of modern, intuitive, and mobile-friendly data collection interfaces, there is a critical opportunity to enhance the REDCap experience to meet the needs of researchers and patients.

Travel Distance Between Participants in US Telemedicine Sessions With Estimates of Emissions Savings: Observational Study.

BACKGROUND: Digital health and telemedicine are potentially important strategies to decrease health care's environmental impact and contribution to climate change by reducing transportation-related air pollution and greenhouse gas emissions. However, we currently lack robust national estimates of emissions savings attributable to telemedicine. OBJECTIVE: This study aimed to (1) determine the travel distance between participants in US telemedicine sessions and (2) estimate the net reduction in carbon dioxide (CO2) emissions attributable to telemedicine in the United States, based on national observational data describing the geographical characteristics of telemedicine session participants. METHODS: We conducted a retrospective observational study of telemedicine sessions in the United States between January 1, 2022, and February 21, 2023, on the doxy.me platform. Using Google Distance Matrix, we determined the median travel distance between participating providers and patients for a proportional sample of sessions. Further, based on the best available public data, we estimated the total annual emissions costs and savings attributable to telemedicine in the United States. RESULTS: The median round trip travel distance between patients and providers was 49 (IQR 21-145) miles. The median CO2 emissions savings per telemedicine session was 20 (IQR 8-59) kg CO2). Accounting for the energy costs of telemedicine and US transportation patterns, among other factors, we estimate that the use of telemedicine in the United States during the years 2021-2022 resulted in approximate annual CO2 emissions savings of 1,443,800 metric tons. CONCLUSIONS: These estimates of travel distance and telemedicine-associated CO2 emissions costs and savings, based on national data, indicate that telemedicine may be an important strategy in reducing the health care sector's carbon footprint.

Narrative review of telemedicine applications in decentralized research.

Telemedicine enables critical human communication and interaction between researchers and participants in decentralized research studies. There is a need to better understand the overall scope of telemedicine applications in clinical research as the basis for further research. This narrative, nonsystematic review of the literature sought to review and discuss applications of telemedicine, in the form of synchronous videoconferencing, in clinical research. We searched PubMed to identify relevant literature published between January 1, 2013, and June 30, 2023. Two independent screeners assessed titles and abstracts for inclusion, followed by single-reviewer full-text screening, and we organized the literature into core themes through consensus discussion. We screened 1044 publications for inclusion. Forty-eight publications met our inclusion and exclusion criteria. We identified six core themes to serve as the structure for the narrative review: infrastructure and training, recruitment, informed consent, assessment, monitoring, and engagement. Telemedicine applications span all stages of clinical research from initial planning and recruitment to informed consent and data collection. While the evidence base for using telemedicine in clinical research is not well-developed, existing evidence suggests that telemedicine is a potentially powerful tool in clinical research.

Will the United States pass on telemedicine progress?

Background: During the COVID-19 pandemic, federal and state health policies allowed temporary flexibilities for Medicare and Medicaid beneficiaries, leading to a sharp increase in telemedicine use. However, many of the flexibilities that enabled innovation and growth in telemedicine continue temporarily since the federal emergency declaration ended in May 2023, and the United States has not made permanent decisions about telemedicine policy. Analysts have raised concerns about increased spending, program integrity, safety, and equity, and recommend strengthening oversight. Methods: Here, we argue that we must continue the flexibilities to better understand telemedicine's quality, safety, and outcomes, and until the United States can develop an evidence-based digital health strategy. A premature regression to pre-pandemic telemedicine policies risks unintended consequences. Conclusion: We must continue the current policy flexibilities, safeguard against fraud and abuse, and immediately prioritize research and evaluation of telemedicine's quality, safety, and outcomes, to avoid unintended consequences and support more permanent policy decision-making.

Telemedicine from Home or the Office: Perceptions of Mental Health Providers.

Introduction: The COVID-19 pandemic led to a rapid transition to telemedicine for mental health care and redefined many providers' work environments and practices. The purpose of the study was to investigate the impact of work location on telemental health (TMH) benefits, disruptions, and concerns to further understand the rapid implementation of telemedicine for mental health treatment. Methods: A sample of 175 practicing TMH providers completed an online survey between July and August 2020. Providers answered questions about personal demographics and practice characteristics. Next, they answered questions about benefits, disruptions, and concerns regarding the use of telemedicine in their practice. Chi-square and independent samples t-test were conducted to identify work location differences for personal demographics and clinical practice characteristics. Three multivariate analyses of covariance were conducted to examine overall differences in perceptions of telemedicine benefits, concerns, and disruptions based on work location while covarying for provider race, ethnicity, percentage of caseload seen through telemedicine, practice type, specialty, and primary method of reimbursement. Results: TMH providers who primarily work from an office reported more benefit of reduced costs/overhead (ηp2 = 0.039), less benefit of limiting the spread of the virus (ηp2 = 0.028), and more concern about reimbursement (ηp2 = 0.046) than those who primarily work from home. We observed no difference in disruptions, patient access to care, quality of care, and work-life balance. Discussion: Exploration into work location of TMH providers aids in understanding of clinical workflows and provider wellbeing. Our findings suggest that telemedicine may be easily integrated into different types of clinical workflows and work locations.

Consensus Guidelines for Teledermatology: Scoping Review.

BACKGROUND: Consensus guidelines and recommendations play an important role in fostering quality, safety, and best practices, as they represent an expert interpretation of the biomedical literature and its application to practice. However, it is unclear whether the recent collective experience of implementing telemedicine and the concurrent growth in the evidence base for teledermatology have resulted in more robust guidance. OBJECTIVE: The objective of this review was to describe the extent and nature of currently available guidance, defined as consensus guidelines and recommendations available for telemedicine in dermatology, with guidance defined as consensus or evidence-based guidelines, protocols, or recommendations. METHODS: We conducted a single-reviewer scoping review of the literature to assess the extent and nature of available guidance, consensus guidelines, or recommendations related to teledermatology. We limited the review to published material in English since 2013, reflecting approximately the past 10 years. We conducted the review in November and December of the year 2022. RESULTS: We identified 839 potentially eligible publications, with 9 additional records identified through organizational websites. A total of 15 publications met the inclusion and exclusion criteria. The guidelines focused on varied topics and populations about dermatology and skin diseases. However, the most frequent focus was general dermatology (8/15, 53%). Approximately half of the telemedicine guidance described in the publications was specific to dermatology practice in the context of the COVID-19 pandemic. The publications were largely published in or after the year 2020 (13/15, 87%). Geographical origin spanned several different nations, including Australia, the United States, European countries, and India. CONCLUSIONS: We found an increase in COVID-19-specific teledermatology guidance during 2020, in addition to general teledermatology guidance during the period of the study. Primary sources of general teledermatology guidance reported in the biomedical literature are the University of Queensland's Centre for Online Health and Australasian College of Dermatologists E-Health Committee, and the American Telemedicine Association. There is strong evidence of international engagement and interest. Despite the recent increase in research reports related to telemedicine, there is a relative lack of new guidance based on COVID-19 lessons and innovations. There is a need to review recent evidence and update existing recommendations. Additionally, there is a need for guidance that addresses emerging technologies.

Therapist perspectives on telehealth-based virtual reality exposure therapy.

Virtual reality (VR) can enhance mental health care. In particular, the effectiveness of VR-based exposure therapy (VRET) has been well-demonstrated for treatment of anxiety disorders. However, most applications of VRET remain localized to clinic spaces. We aimed to explore mental health therapists' perceptions of telehealth-based VRET (tele-VRET) by conducting semi-structured, qualitative interviews with 18 telemental health therapists between October and December 2022. Interview topics included telehealth experiences, exposure therapy over telehealth, perceptions of VR in therapy, and perspectives on tele-VRET. Therapists described how telehealth reduced barriers (88.9%, 16/18), enhanced therapy (61.1%, 11/18), and improved access to clients (38.9%, 7/18), but entailed problems with technology (61.1%, 11/18), uncontrolled settings (55.6%, 10/18), and communication di culties (50%, 9/18). Therapists adapted exposure therapy to telehealth by using online resources (66.7%, 12/18), preparing client expectations (55.6%, 10/18), and adjusting workflows (27.8%, 5/18). Most therapists had used VR before (72.2%, 13/18) and had positive impressions (55.6%, 10/18), but none had used VR clinically. In response to tele-VRET, therapists requested interactive session activities (77.8%, 14/18) and customizable interventions components (55.6%, 10/18). Concerns about tele-VRET included risks with certain clients (77.8%, 14/18), costs (50%, 9/18), side effects and privacy (22.2%, 4/18), and inappropriateness for specific forms of exposure therapy (16.7%, 3/18). These results show how designing for telehealth may extend VRET and can help inform collaborative development of health technologies.

Older adults' experience with virtual conversational agents for health data collection.

Introduction: Virtual conversational agents (i.e., chatbots) are an intuitive form of data collection. Understanding older adults' experiences with chatbots could help identify their usability needs. This quality improvement study evaluated older adults' experiences with a chatbot for health data collection. A secondary goal was to understand how perceptions differed based on length of chatbot forms. Methods: After a demographic survey, participants (≥60 years) completed either a short (21 questions), moderate (30 questions), or long (66 questions) chatbot form. Perceived ease-of-use, usefulness, usability, likelihood to recommend, and cognitive load were measured post-test. Qualitative and quantitative analyses were used. Results: A total of 260 participants reported on usability and satisfaction metrics including perceived ease-of-use (5.8/7), usefulness (4.7/7), usability (5.4/7), and likelihood to recommend (Net Promoter Score = 0). Cognitive load (12.3/100) was low. There was a statistically significant difference in perceived usefulness between groups, with a significantly higher mean perceived usefulness for Group 1 than Group 3. No other group differences were observed. The chatbot was perceived as quick, easy, and pleasant with concerns about technical issues, privacy, and security. Participants provided suggestions to enhance progress tracking, edit responses, improve readability, and have options to ask questions. Discussion: Older adults found the chatbot to be easy, useful, and usable. The chatbot required low cognitive load demonstrating it could be an enjoyable health data collection tool for older adults. These results will inform the development of a health data collection chatbot technology.

Providers' Perspectives on Telemental Health Usage After the COVID-19 Pandemic: Retrospective Analysis.

BACKGROUND: Mental health care pivoted to telemedicine during the COVID-19 pandemic, and there is uncertainty around the sustainability of this rapid shift. OBJECTIVE: This study examined how intentions to continue using telemedicine after the COVID-19 pandemic are influenced by provider perceptions of usefulness, ease of use, and professional social influence, facilitating organizational conditions. METHODS: We conducted a web-based, cross-sectional survey of 369 telemental health providers between February and March 2021. A hierarchical linear regression analysis was conducted to predict intentions to continue using telemedicine after the COVID-19 pandemic. RESULTS: Most providers began using telemedicine in March 2020 or later (257/369, 69.6%) and attended to ≥50% of their clients via telemedicine (299/369, 81.0%). Intention to continue using telemedicine after the COVID-19 pandemic was predicted by the telemedicine caseload (ß=.10; P=.005), perceived usefulness in general (ß=.10; P=.008), ease of use (ß=.08; P=.04), social influence (ß=.68; P<.001), and facilitating conditions (ß=.08; P=.047). CONCLUSIONS: Exploration of the predictors of telemedicine usage beyond the COVID-19 pandemic aids in surveillance of telemedicine usage, integration with future clinic workflows, and the shaping of public policy. It is important to consider telemedicine services as not only a response to a crisis but also an effective and useful solution for everyday life. Our results suggest widespread, sustainable telemedicine adoption.

Virtual conversational agents versus online forms: Patient experience and preferences for health data collection.

Objective: Virtual conversational agents, or chatbots, have emerged as a novel approach to health data collection. However, research on patient perceptions of chatbots in comparison to traditional online forms is sparse. This study aimed to compare and assess the experience of completing a health assessment using a chatbot vs. an online form. Methods: A counterbalanced, within-subject experimental design was used with participants recruited via Amazon Mechanical Turk (mTurk). Participants completed a standardized health assessment using a chatbot (i.e., Dokbot) and an online form (i.e., REDCap), each followed by usability and experience questionnaires. To address poor data quality and preserve integrity of mTurk responses, we employed a thorough data cleaning process informed by previous literature. Quantitative (descriptive and inferential statistics) and qualitative (thematic analysis and complex coding query) approaches were used for analysis. Results: A total of 391 participants were recruited, 185 of whom were excluded, resulting in a final sample size of 206 individuals. Most participants (69.9%) preferred the chatbot over the online form. Average Net Promoter Score was higher for the chatbot (NPS = 24) than the online form (NPS = 13) at a statistically significant level. System Usability Scale scores were also higher for the chatbot (i.e. 69.7 vs. 67.7), but this difference was not statistically significant. The chatbot took longer to complete but was perceived as conversational, interactive, and intuitive. The online form received favorable comments for its familiar survey-like interface. Conclusion: Our findings demonstrate that a chatbot provided superior engagement, intuitiveness, and interactivity despite increased completion time compared to online forms. Knowledge of patient preferences and barriers will inform future design and development of recommendations and best practice for chatbots for healthcare data collection.

Perceptions of Telemental Health Care Delivery During COVID-19: A Cross-Sectional Study With Providers, February-March 2021.

The COVID-19 pandemic accelerated adoption of telemental health (TMH). Providers with limited TMH experience faced challenges during the rapid switch to remote patient care. We investigated TMH providers' perceptions about remote care one year into the pandemic according to when providers adopted telemedicine (i.e., before vs. after March 2020) and how much of their caseloads were served remotely (i.e., < 50% vs. ≥ 50%). Between February-March 2021, 472 TMH providers completed a cross-sectional, web-based survey that measured perceived benefits and satisfaction with telemedicine, therapeutic alliance, patient-centered communication, eHealth literacy, multicultural counseling self-efficacy, and facilitating factors of using telemedicine. Providers who began using telemedicine before the pandemic reported having better training, task-related therapeutic alliance with patients, and ability to conduct multicultural interventions, assessments, and session management. Providers who served ≥ 50% of their caseload remotely reported greater satisfaction with their practice, stronger beliefs about the benefits of telemedicine, and greater perceived effects of telemedicine on alleviating the impact of COVID-19. There were no differences in reports of patient-centered communication nor eHealth literacy. In conclusion, providers who adopted TMH more recently may require additional training and support to successfully establish a working alliance with their patients, especially with multicultural aspects of care.

The Symbiosis of Virtual Reality Exposure Therapy and Telemental Health: A Review.

Phobias and related anxiety are common and costly mental health disorders. Experts anticipate the prevalence of phobias will increase due to the COVID-19 pandemic. Exposure therapies have been established as effective and reliable treatments for anxiety, including recent innovations in virtual reality-based exposure therapy (VRET). With the recent advent of telemental health (TMH), VRET is poised to become mainstream. The combination of VRET and TMH has the potential to extend provider treatment options and improve patient care experiences. In this narrative review, we describe how recent events have accelerated VRET + TMH, identify barriers to VRET + TMH implementation, and discuss strategies to navigate those barriers.

Extended Reality for Enhanced Telehealth During and Beyond COVID-19: Viewpoint.

The COVID-19 pandemic caused widespread challenges and revealed vulnerabilities across global health care systems. In response, many health care providers turned to telehealth solutions, which have been widely embraced and are likely to become standard for modern care. Immersive extended reality (XR) technologies have the potential to enhance telehealth with greater acceptability, engagement, and presence. However, numerous technical, logistic, and clinical barriers remain to the incorporation of XR technology into telehealth practice. COVID-19 may accelerate the union of XR and telehealth as researchers explore novel solutions to close social distances. In this viewpoint, we highlight research demonstrations of XR telehealth during the COVID-19 pandemic and discuss future directions to make XR the next evolution of remote health care.

A pilot comparison of medical records sensitivity perspectives of patients with behavioral health conditions and healthcare providers.

This pilot study compares medical record data sensitivity (e.g., depression is sensitive) and categorization perspective (e.g., depression categorized as mental health information) of patients with behavioral health conditions and healthcare providers using a mixed-methods approach employing patient's own EHR. Perspectives of 25 English- and Spanish-speaking patients were compared with providers. Data categorization comparisons resulted in 66.3% agreements, 14.5% partial agreements, and 19.3% disagreements. Sensitivity comparisons obtained 54.5% agreement, 11.9% partial agreement, and 33.6% disagreements. Patients and providers disagreed in classification of genetic data, mental health, drug abuse, and physical health information. Factors influencing patients' sensitivity determination were sensitive category comprehension, own experience, stigma towards category labels (e.g., drug abuse), and perception of information applicability (e.g., alcohol dependency). Knowledge of patients' sensitivity perceptions and reconciliation with providers could expedite the development of granular and personalized consent technology.

Physician Workflow in Two Distinctive Emergency Departments: An Observational Study.

OBJECTIVES: We characterize physician workflow in two distinctive emergency departments (ED). Physician practices mediated by electronic health records (EHR) are explored within the context of organizational complexity for the delivery of care. METHODS: Two urban clinical sites, including an academic teaching ED, were selected. Fourteen physicians were recruited. Overall, 62 hours of direct clinical observations were conducted characterizing clinical activities (EHR use, team communication, and patient care). Data were analyzed using qualitative open-coding techniques and descriptive statistics. Timeline belts were used to represent temporal events. RESULTS: At site 1, physicians, engaged in more team communication, followed by direct patient care. Although physicians spent 61% of their clinical time at workstations, only 25% was spent on the EHR, primarily for clinical documentation and review. Site 2 physicians engaged primarily in direct patient care spending 52% of their time at a workstation, and 31% dedicated to EHRs, focused on chart review. At site 1, physicians showed nonlinear complex workflow patterns with a greater frequency of multitasking and interruptions, resulting in workflow fragmentation. In comparison, at site 2, a less complex environment with a unique patient assignment system, resulting in a more linear workflow pattern. CONCLUSION: The nature of the clinical practice and EHR-mediated workflow reflects the ED work practices. Physicians in more complex organizations may be less efficient because of the fragmented workflow. However, these effects can be mitigated by effort distribution through team communication, which affords inherent safety checks.

Pilot evaluation of sensitive data segmentation technology for privacy.

BACKGROUND: Consent2Share (C2S) is an open source software created by the Office of the National Coordinator Data Segmentation for Privacy initiative to support electronic health record (EHR) granular segmentation. To date, there are no published formal evaluations of Consent2Share. METHOD: Structured data (e.g. medications) codified using standard clinical terminologies (e.g. RxNorm) was extracted from the EHR of 36 patients with behavioral health conditions from study sites. EHRs were available through a health information exchange and two sites. The EHR data was already classified into data types (e.g. procedures and services). Both Consent2Share and health providers classified EHR data based on value sets (e.g. mental health) and sensitivity (e.g. not sensitive. Descriptive statistics and Chi-square analysis were used to compare differences between data categorizations. RESULTS: From the resulting 1,080 medical records items, 584 were distinct. Significant differences were found between sensitivity classifications by Consent2Share and providers (χ2 (2, N = 584) = 114.74, p = <0.0001). Sensitivity comparisons led to 56.0 % of agreements, 31.2 % disagreements, and 12.8 % partial agreements. Most (97.8 %) disagreements resulted from information classified as not sensitive by Consent2Share, but sensitive by provider (e.g. behavioral health prevention education service). In terms of data types, most disagreements (57.1 %) focused on procedures and services information (e.g. ligation of fallopian tube). When considering value sets, most disagreements focused on genetic data (100.0 %), followed by sexual and reproductive health (88.9 %). CONCLUSIONS: There is a need to further validate Consent2Share before broad use in health care settings. The outcomes from this pilot study will help guide improvements in segmentation logic of tools like Consent2Share and may set the stage for a new generation of personalized consent engines.

Mental health professional perspectives on health data sharing: Mixed methods study.

This study explores behavioral health professionals' perceptions of granular data. Semi-structured in-person interviews of 20 health professionals were conducted at two different sites. Qualitative and quantitative analysis was performed. While most health professionals agreed that patients should control who accesses their personal medical record (70%), there are certain types of health information that should never be restricted (65%). Emergent themes, including perceived reasons that patients might share or withhold certain types of health information (65%), care coordination (12%), patient comprehension (11%), stigma (5%), trust (3%), sociocultural understanding (3%), and dissatisfaction with consent processes (1%), are explored. The impact of care role (prescriber or non-prescriber) on data-sharing perception is explored as well. This study informs the discussion on developing technology that helps balance provider and patient data-sharing and access needs.

State of the art and a mixed-method personalized approach to assess patient perceptions on medical record sharing and sensitivity.

OBJECTIVE: Sensitive health information possesses risks, such as stigma and discrimination, when disclosed. Few studies have used a patient's own electronic health records (EHRs) to explore what types of information are considered sensitive andhow such perceptions affect data sharing preferences. After a systematic literature review, we designed and piloted a mixed-method approach that employs an individual's own records to assess content sensitivity and preferences for granular data sharing for care and research. METHODS: A systematic literature review of methodologies employed to assess data sharing willingness and perceptions on data sensitivity was conducted. A methodology was designed to organize and categorize sensitive health information from EHRs. Patients were asked permission to access their EHRs, including those available through the state's health information exchange. A semi-structured interview script with closed card sorting was designed and personalized to each participant's own EHRs using 30 items from each patient record. This mixed method combines the quantitative outcomes from the card sorting exercises with themes captured from interview audio recording analysis. RESULTS: Eight publications on patients' perspectives on data sharing and sensitivity were found. Based on our systematic review, the proposed method meets a need to use EHRs to systematize the study of data privacy issues. Twenty-five patients with behavioral health conditions, English and Spanish-speaking, were recruited. On average, participants recognized 82.7% of the 30 items from their own EHRs. Participants considered mental health (76.0%), sexual and reproductive health (75.0%) and alcohol use and alcoholism (50.0%) sensitive information. Participants were willing to share information related to other addictions (100.0%), genetic data (95.8%) and general physical health information (90.5%). CONCLUSION: The findings indicate diversity in patient views on EHR sensitivity and data sharing preferences and the need for more granular and patient-centered electronic consent mechanisms to accommodate patient needs. More research is needed to validate the generalizability of the proposed methodology.