Why Do Data Users Say Health Care Data Are Difficult to Use? A Cross-Sectional Survey Study.
ABSTRACT: BACKGROUND:There has been significant effort in attempting to use health care data. However, laws that protect patients' privacy have restricted data use because health care data contain sensitive information. Thus, discussions on privacy laws now focus on the active use of health care data beyond protection. However, current literature does not clarify the obstacles that make data usage and deidentification processes difficult or elaborate on users' needs for data linking from practical perspectives. OBJECTIVE:The objective of this study is to investigate (1) the current status of data use in each medical area, (2) institutional efforts and difficulties in deidentification processes, and (3) users' data linking needs. METHODS:We conducted a cross-sectional online survey. To recruit people who have used health care data, we publicized the promotion campaign and sent official documents to an academic society encouraging participation in the online survey. RESULTS:In total, 128 participants responded to the online survey; 10 participants were excluded for either inconsistent responses or lack of demand for health care data. Finally, 118 participants' responses were analyzed. The majority of participants worked in general hospitals or universities (62/118, 52.5% and 51/118, 43.2%, respectively, multiple-choice answers). More than half of participants responded that they have a need for clinical data (82/118, 69.5%) and public data (76/118, 64.4%). Furthermore, 85.6% (101/118) of respondents conducted deidentification measures when using data, and they considered rigid social culture as an obstacle for deidentification (28/101, 27.7%). In addition, they required data linking (98/118, 83.1%), and they noted deregulation and data standardization to allow access to health care data linking (33/98, 33.7% and 38/98, 38.8%, respectively). There were no significant differences in the proportion of responded data needs and linking in groups that used health care data for either public purposes or commercial purposes. CONCLUSIONS:This study provides a cross-sectional view from a practical, user-oriented perspective on the kinds of data users want to utilize, efforts and difficulties in deidentification processes, and the needs for data linking. Most users want to use clinical and public data, and most participants conduct deidentification processes and express a desire to conduct data linking. Our study confirmed that they noted regulation as a primary obstacle whether their purpose is commercial or public. A legal system based on both data utilization and data protection needs is required.
Project description:BACKGROUND:Mental health care is shifting from a primary focus on symptom reduction toward personal recovery-oriented care, especially for persons with long-term mental health care needs. Web-based portals may facilitate this shift, but little is known about how such tools are used or the role they may play in personal recovery. OBJECTIVE:The aim was to illustrate uses and experiences with the secure e-recovery portal "ReConnect" as an adjunct to ongoing community mental health care and explore its potential role in shifting practices toward recovery. METHODS:ReConnect was introduced into two Norwegian mental health care communities and used for 6 months. The aim was to support personal recovery and collaboration between service users and health care providers. Among inclusion criteria for participation were long-term care needs and at least one provider willing to interact with service users through ReConnect. The portal was designed to support ongoing collaboration as each service user-provider dyad/team found appropriate and consisted of (1) a toolbox of resources for articulating and working with recovery processes, such as status/goals/activities relative to life domains (eg, employment, social network, health), medications, network map, and exercises (eg, sleep hygiene, mindfulness); (2) messaging with providers who had partial access to toolbox content; and (3) a peer support forum. Quantitative data (ie, system log, questionnaires) were analyzed using descriptive statistics. Qualitative data (eg, focus groups, forum postings) are presented relative to four recovery-oriented practice domains: personally defined recovery, promoting citizenship, working relationships, and organizational commitment. RESULTS:Fifty-six participants (29 service users and 27 providers) made up 29 service user-provider dyads. Service users reported having 11 different mental health diagnoses, with a median 2 (range 1-7) diagnoses each. The 27 providers represented nine different professional backgrounds. The forum was the most frequently used module with 1870 visits and 542 postings. Service users' control over toolbox resources (eg, defining and working toward personal goals), coupled with peer support, activated service users in their personal recovery processes and in community engagement. Some providers (30%, 8/27) did not interact with service users through ReConnect. Dyads that used the portal resources did so in highly diverse ways, and participants reported needing more than 6 months to discover and adapt optimal uses relative to their individual and collaborative needs. CONCLUSIONS:Regardless of providers' portal use, service users' control over toolbox resources, coupled with peer support, offered an empowering common frame of reference that represented a shift toward recovery-oriented practices within communities. Although service users' autonomous use of the portal can eventually influence providers in the direction of recovery practices, a fundamental shift is unlikely without broader organizational commitments aligned with recovery principles (eg, quantified goals for service user involvement in care plans).
Project description:AIM:The current research was conducted in the context of an ongoing reform of mental health services in the Republic of Moldova since 2014, where efforts have been devoted to creating community-based mental health services. This article presents a snapshot of the needs of mental health service users in the Republic of Moldova and helps to understand how and with which services their needs can be addressed. METHODS:This cross-sectional study compared the levels of needs (CANSAS scale), quality of life (EQ-5D 3L), mental health status (MINI for psychotic disorders) and functioning (WHO-DAS) among mental health service users in the psychiatric hospital in Chisinau, Moldova. All service users resided in districts where community mental health services were being developed. Correlations between quality of life, functioning and unmet need were explored. RESULTS:Of 83 participants, one third had a psychotic or a mood disorder. On average, participants reported needs in 9.41 domains (SD = 4.41), of which 4.29 were unmet (SD = 3.63). Most unmet needs related to intimacy and relation to others. The level of functioning and quality of life were reported. We found strong, negative associations between the number of unmet needs and level of functioning, as well as the quality of life. We also found that higher functioning levels were positively associated with higher quality of life. CONCLUSION:There were a high number of unmet needs among this inpatient population, particularly social needs and service-related needs. A continuum of inpatient and outpatient care and individual treatment plans can help address the different needs of different patients. Individual treatment plans for patients and the choice of the appropriate treatment for patients could be guided by an assessment of service users' (unmet) needs of care and level of functioning.
Project description:BACKGROUND:Egypt is a country of nearly 100 million citizens, and there are less than 1000 registered psychiatrists. The mental health care system is under resourced and nearly inaccessible for the majority of the population. In addition, youth under the age of 25 years represent 50% of Egyptian citizens; however, there are no specific services addressing their unique needs. How can the needs of the largest population in the Middle East be effectively addressed? Is a web-based framework an option for Egyptian psychiatrists to serve the population? OBJECTIVE:The aims of this study were to better understand the opinions of psychiatrists on the current state of mental health care services in Egypt and their current knowledge on electronic mental health (EMH); assess the attitudes of Egyptian psychiatrists toward web-based interventions and telemedicine for mental health; and identify perceived advantages and barriers of EMH development in Egypt. METHODS:A cross-sectional survey was conducted online among 640 Egyptian psychiatrists. It included a total of 36 items within a set of 16 questions asking about EMH literacy, integrating EMH into the mental health care system, and the perceived priorities and barriers of EMH. The sampling was supported by Tanta University, a large academic institution close to Cairo. Statistical analysis was performed using SPSS 25 (IBM Corp). Descriptive statistics, the chi-square test, the independent sample t test, and analysis of variance were applied. RESULTS:A total of 188 participants responded (response rate of 29.4%), of which 54.2% (102/188) were female and 54.3% (102/188) were between 30 and 45 years old. Less than half of the participants thought that the current health care system was efficient for adults (69/155, 44.4%), and even less thought it was efficient for youth (44/155, 28.3%). Almost all participants agreed that EMH would be beneficial for patient care (147/155, 94.8%) and that integrating EMH into the current health care system would be a good idea (118/155, 76.2%). The highest rated utility of web-based solutions was documentation, followed by psychoeducation and communication with professionals. The main advantages were to improve access to care in rural areas of the country and its convenience. CONCLUSIONS:There is scarcity of mental health resources in Egypt. Egyptian psychiatrists are interested in EMH and believe web-based platforms can become part of the solution for the Egyptian mental health care system.
Project description:Frequent users of hospital emergency departments (EDs) are a medically and socially vulnerable population. This article describes the rationale for a brief case management intervention for frequent ED users with mental health and/or addiction challenges and the design of a randomized trial assessing its effectiveness.Eligible participants are adults in a large urban centre with five or more ED visits in the past year, with at least one prior visit for a mental health or addictions reason. Participants (N?=?166) will be randomized to either 4 to 6 months of brief case management or usual care, and interviewed every 3 months for 1 year. Consent will be sought to access administrative health records. A subset of participants (N?=?20) and service providers (N?=?13) will participate in qualitative data collection.Addressing the needs of frequent ED users is a priority in many jurisdictions. This study will provide evidence on the effectiveness of brief case management, compared to usual care, on reducing ED visits among frequent ED users experiencing mental health or substance misuse problems, and inform policy and practice in this important area.ClinicalTrials.gov Identifier: NCT01622244 . Registered 4 June 2012.
Project description:Complementary and Alternative Medicine use and how it impacts health care utilization in the United States Military is not well documented. Using data from the Millennium Cohort Study we describe the characteristics of CAM users in a large military population and document their health care needs over a 12-month period. The aim of this study was to determine if CAM users are requiring more physician-based medical services than users of conventional medicine.Inpatient and outpatient medical services were documented over a 12-month period for 44,287 participants from the Millennium Cohort Study. Equal access to medical services was available to anyone needing medical care during this study period. The number and types of medical visits were compared between CAM and non-CAM users. Chi square test and multivariable logistic regression was applied for the analysis.Of the 44,287 participants, 39% reported using at least one CAM therapy, and 61% reported not using any CAM therapies. Those individuals reporting CAM use accounted for 45.1% of outpatient care and 44.8% of inpatient care. Individuals reporting one or more health conditions were 15% more likely to report CAM use than non-CAM users and 19% more likely to report CAM use if reporting one or more health symptoms compared to non-CAM users. The unadjusted odds ratio for hospitalizations in CAM users compared to non-CAM users was 1.29 (95% CI: 1.16-1.43). The mean number of days receiving outpatient care for CAM users was 7.0 days and 5.9 days for non-CAM users (p < 0.001).Our study found those who report CAM use were requiring more physician-based medical services than users of conventional medicine. This appears to be primarily the result of an increase in the number of health conditions and symptoms reported by CAM users.
Project description:This study describes the prevalence and predisposing factors for potentially modifiable unmet emotional, care/support, and information needs among adult survivors of childhood malignancies.A randomly selected/stratified sample of participants in the Childhood Cancer Survivor Study (CCSS) responded to the CCSS-Needs Assessment Questionnaire (CCSS-NAQ) (n?=?1189; mean [SD] current age, 39.7 [7.7], range?=?26-61 years; 60.9 % women; mean [SD] years since diagnosis, 31.6 [4.7]). Survivors self-reported demographic information, health concerns, and needs; diagnosis/treatment data were obtained from medical records. Adjusted proportional risk ratios (prevalence ratios, PRs) were used to evaluate 77 separate needs.Fifty-four percent of survivors reported unmet psycho-emotional, 41 % coping, and 35 % care/support needs; 51, 35, and 33 %, respectively, reported unmet information needs related to cancer/treatment, the health care system, and surveillance. Female sex and annual income <$60K were associated with multiple needs; fewer needs were linked to diagnosis/years since/or age at diagnosis. Having moderate/extreme cancer-related anxiety/fear was associated with all needs, including a >6-fold increased prevalence for help dealing with "worry" (PR?=?6.06; 95 % confidence interval [CI], 3.79-9.69) and anxiety (PR?=?6.10; 95 % CI, 3.82-9.72) and a >5-fold increased prevalence for "needing to move on with life" (PR?=?5.56; 95 % CI, 3.34-9.25) and dealing with "uncertainty about the future" (PR?=?5.50; 95 % CI, 3.44-8.77). Radiation exposure and perceived health status were related to 42 and 29 needs, respectively.Demographic factors, disease/treatment characteristics, and intrapersonal factors can be used to profile survivors' unmet emotional, care/support, and information needs.These data can be used to enhance provider-survivor communication, identify at-risk subsamples, and appraise core intervention content.
Project description:Wearable mobile health (mHealth) technologies offer approaches for targeting physical activity (PA) in resource-limited, community-based interventions. We sought to explore user characteristics of PA tracking, wearable technology among a community-based population within a health and needs assessment. In 2014-2015, we conducted the Washington, D.C., Cardiovascular Health and Needs Assessment in predominantly African-American churches among communities with higher obesity rates and lower household incomes. Participants received a mHealth PA monitor and wirelessly uploaded PA data weekly to church data collection hubs. Participants (n = 99) were 59 ± 12 years, 79% female, and 99% African-American, with a mean body mass index of 33 ± 7 kg/m2. Eighty-one percent of participants uploaded PA data to the hub and were termed "PA device users." Though PA device users were more likely to report lower household incomes, no differences existed between device users and non-users for device ownership or technology fluency. Findings suggest that mHealth systems with a wearable device and data collection hub may feasibly target PA in resource-limited communities.
Project description:Aotearoa-New Zealand is expecting the number of older adults to double in the next 20 years. Despite publicly funded health and welfare support for older citizens, the aging experience differs across ethnic groups. This creates opportunities and challenges for health and social services to deliver culturally safe and equitable care for all older New Zealanders. Longitudinal and large data sets are pivotal for characterizing the aging experience from birth to advanced age. The New Zealand research funding system responded to predicted demographic changes by increasing funding in order to inform and address key health and well-being issues for older people. In addition, government strategies and policies increasingly focus on social aspects of aging and health inequities and require researchers and organizations to be better connected to end-users. New Zealand needs to continue to fund research that identifies unique and courageous service delivery solutions that result in positive social, financial, psychological, and physical aging for older New Zealanders.
Project description:BACKGROUND: The high mental health care consumption rates of divorced singles may constitute a heavy burden on the public health care system. This raises the question of whether their higher health care use stems from a greater need, or whether there are other factors contributing to these high consumption rates. We examine both health care use and subjective unmet need (perceiving a need for care without seeking it) because of social or emotional problems of the divorced singles, the repartnered divorcees, and the married. Moreover, we investigate how health care use and subjective unmet need relate to each other. METHODS: We conduct several gender specific logistic regressions employing data from the Divorce in Flanders Survey (N men = 2884; N women = 3317). RESULTS: Results show that the divorced singles have more contact with professional health care providers (general practitioners, psychiatrists, and psychologists) because of social or emotional problems, and more often perceive unmet needs. The higher health care use rates and greater subjective unmet needs can largely be attributed to higher levels of depressive symptoms. Surprisingly, we find that non-frequent health care users more often perceive a subjective unmet need than frequent health care users and those who have not contacted any health care provider. CONCLUSION: The single divorced consult health care providers more often because of social or emotional problems and they also perceive unmet needs more often.
Project description:Guidelines for optimal transition call for multidisciplinary teams, including psychologists, to address youth and young adults' multifactorial needs. This study aimed to characterize psychologists' roles in and barriers to involvement in transition from pediatric to adult health care.Psychologists were invited via professional listservs to complete an online survey about practice settings, roles in transition programming, barriers to involvement, and funding sources. Participants also responded to open-ended questions about their experiences in transition programs.One hundred participants responded to the survey. Involvement in transition was reported at multiple levels from individual patient care to institutional transition programming, and 65% reported more than one level of involvement. Direct clinical care (88%), transition-related research (50%), and/or leadership (44%) involvement were reported, with 59% reporting more than one role. Respondents often described advocating for their involvement on transition teams. Various sources of funding were reported, yet, 23% reported no funding for their work. Barriers to work in transition were common and included health care systems issues such as poor coordination among providers or lack of a clear transition plan within the clinic/institution.Psychologists assume numerous roles in the transition of adolescents from pediatric to adult health care. With training in health care transition-related issues, psychologists are ideally positioned to partner with other health professionals to develop and implement transition programs in multidisciplinary settings, provided health care system barriers can be overcome.