Dataset Information

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

ABSTRACT:

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.

SUBMITTER: Soni H

PROVIDER: S-EPMC6952579 | biostudies-literature | 2020 Jan

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Soni Hiral H Grando Adela A Murcko Anita A Diaz Sabrina S Mukundan Madhumita M Idouraine Nassim N Karway George G Todd Michael M Chern Darwyn D Dye Christy C Whitfield Mary Jo MJ

Journal of biomedical informatics 20191111

<h4>Objective</h4>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 shar ...[more]

PMID: 31726102

Similar Datasets

Project description:BackgroundWhile concerns remain regarding Electronic Medical Records (EMR) use impeding doctor-patient communication, resident and faculty patient perspectives post-widespread EMR adoption remain largely unexplored.ObjectiveWe aimed to describe patient perspectives of outpatient resident and faculty EMR use and identify positive and negative EMR use examples to promote optimal utilization.DesignThis was a prospective mixed-methods study.ParticipantsInternal medicine faculty and resident patients at the University of Chicago's primary care clinic participated in the study.ApproachIn 2013, one year after EMR implementation, telephone interviews were conducted with patients using open-ended and Likert style questions to elicit positive and negative perceptions of EMR use by physicians. Interview transcripts were analyzed qualitatively to develop a coding classification. Satisfaction with physician EMR use was examined using bivariate statistics.ResultsIn total, 108 interviews were completed and analyzed. Two major themes were noted: (1) Clinical Functions of EMR and (2) Communication Functions of EMR; as well as six subthemes: (1a) Clinical Care (i.e., clinical efficiency), (1b) Documentation (i.e., proper record keeping and access), (1c) Information Access, (1d) Educational Resource, (2a) Patient Engagement and (2b) Physical Focus (i.e., body positioning). Overall, 85 % (979/1154) of patient perceptions of EMR use were positive, with the majority within the "Clinical Care" subtheme (n?=?218). Of negative perceptions, 66 % (115/175) related to the "Communication Functions" theme, and the majority of those related to the "Physical Focus" subtheme (n?=?71). The majority of patients (90 %, 95/106) were satisfied with physician EMR use: 59 % (63/107) reported the computer had a positive effect on their relationship and only 7 % (8/108) reported the EMR made it harder to talk with their doctors.ConclusionsDespite concerns regarding EMRs impeding doctor-patient communication, patients reported largely positive perceptions of the EMR with many patients reporting high levels of satisfaction. Future work should focus on improving doctors "physical focus" when using the EMR to redirect towards the patient.

Project description:ObjectiveThe potential for data collected in general practice to be linked and used to address health system challenges of maintaining quality care, accessibility and safety, including pandemic support, has led to an increased interest in public acceptability of data sharing, however practitioners have rarely been asked to share their opinions on the topic. This paper attempts to gain an understanding of general practitioner's perceptions on sharing routinely collected data for the purposes of healthcare planning and research. It also compares findings with data sharing perceptions in an international context. MATERIALS AND METHODS: A mixed methods approach combining an initial online survey followed by face-to-face interviews (before and during COVID-19), designed to identify the barriers and facilitators to sharing data, were conducted on a cross sectional convenience sample of general practitioners across Western Australia (WA).ResultsEighty online surveys and ten face-to-face interviews with general practitioners were conducted from November 2020 - May 2021. Although respondents overwhelmingly identified the importance of population health research, their willingness to participate in data sharing programs was determined by a perception of trust associated with the organisation collecting and analysing shared data; a clearly defined purpose and process of collected data; including a governance structure providing confidence in the data sharing initiative simultaneously enabling a process of data sovereignty and autonomy.DiscussionResults indicate strong agreement around the importance of sharing patient's medical data for population and health research and planning. Concerns pertaining to lack of trust, governance and secondary use of data continue to be a setback to data sharing with implications for primary care business models being raised.ConclusionTo further increase general practitioner's confidence in sharing their clinical data, efforts should be directed towards implementing a robust data governance structure with an emphasis on transparency and representative stakeholder inclusion as well as identifying the role of government and government funded organisations, as well as building trust with the entities collecting and analysing the data.

Project description:BackgroundExpanding access to antiretroviral therapy (ART) in sub-Saharan Africa requires implementation of alternative care delivery models to traditional physician-centered approaches. This longitudinal analysis compares outcomes of patients initiated on antiretroviral therapy (ART) by non-physician and physician providers.MethodsAdults (?15 years) initiating ART between September 2007 and March 2010, and with >1 follow-up visit were included and classified according to the proportion of clinical visits performed by nurses or by clinical officers (? 80% of visits). Multivariable Poisson models were used to compare 2-year program attrition (mortality and lost to follow-up) and mortality by type of provider. In sensitivity analyses only patients with less severe disease were included.ResultsA total of 10,112 patients contributed 14,012 person-years to the analysis: 3386 (33.5%) in the clinical officer group, 1901 (18.8%) in the nurse care group and 4825 (47.7%) in the mixed care group. Overall 2-year program retention was 81.8%. Attrition was lower in the mixed care and higher in the clinical officer group, compared to the nurse group (adjusted incidence rate ratio [aIRR]=0.54, 95%CI 0.45-0.65; and aIRR=3.03, 95%CI 2.56-3.59, respectively). While patients initiated on ART by clinical officers in the mixed care group had lower attrition (aIRR=0.36, 95%CI 0.29-0.44) than those in the overall nurse care group; no differences in attrition were found between patients initiated on ART by nurses in the mixed care group and those included in the nurse group (aIRR=1.18, 95%CI 0.95-1.47). Two-year mortality estimates were aIRR=0.72, 95%CI 0.49-1.09 and aIRR=5.04, 95%CI 3.56-7.15, respectively. Slightly higher estimates were observed when analyses were restricted to patients with less severe disease.ConclusionThe findings of this study support the use of a mixed care model with well trained and regularly supervised nurses and medical assistants to provide HIV care in countries with high HIV prevalence.

Project description:BackgroundDigital health technologies hold promise to enhance patient-related outcomes, to support health care staff by reducing their workload, and to improve the coordination of care. As key users of digital health technologies, health care workers are crucial to enable a meaningful digital transformation of health care. Digital health literacy and digital skills should become prerequisite competencies for health professionals to facilitate the implementation and leverage the potential of digital technologies to improve health.ObjectiveWe aimed to assess European medical students' perceived knowledge and opinions toward digital health, the status of digital health implementation in medical education, and the students' most pressing needs.MethodsThe explanatory design of our mixed methods study was based on an online, anonymous, self-administered survey targeted toward European medical students. A linear regression analysis was used to identify the influence of the year of medical studies on the responses. Additional analysis was performed by grouping the responses by the self-evaluated frequency of eHealth technology use. Written responses to four qualitative questions in the survey were analyzed using an inductive approach.ResultsThe survey received a total of 451 responses from 39 European countries, and there were respondents for every year of medical studies. The majority of respondents saw advantages in the use of digital health. While 40.6% (183/451) felt prepared to work in a digitized health care system, more than half (240/451, 53.2%) evaluated their eHealth skills as poor or very poor. Medical students considered lack of education to be the reason for this, with 84.9% (383/451) agreeing or strongly agreeing that more digital health education should be implemented in the medical curriculum. Students demanded introductory and specific eHealth courses covering data management, ethical aspects, legal frameworks, research and entrepreneurial opportunities, role in public health and health systems, communication skills, and practical training. The emphasis lay on tailoring learning to future job requirements and interprofessional education.ConclusionsThis study shows a lack of digital health-related formats in medical education and a perceived lack of digital health literacy among European medical students. Our findings indicate a gap between the willingness of medical students to take an active role by becoming key players in the digital transformation of health care and the education that they receive through their faculties.

Dataset Information

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

Objective

Methods

Results

Conclusion

Publications

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

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets