Point and counterpoint: patient control of access to data in their electronic health records.

Information collection, storage, and management is central to the practice of health care. For centuries, patients' and providers' expectations kept medical records confidential between providers and patients. With the advent of electronic health records, patient health information has become more widely available to providers and health care managers and has broadened its potential use beyond individual patient care. Adhering to the principles of Fair Information Practice, including giving patients control over the availability and use of their individual health records, would improve care by fostering the sharing of sensitive information between patients and providers. However, adherence to such principles could put patients at risk for unsafe care as a result of both missed opportunities for providing needed care as well as provision of contraindicated care, as it would prevent health care providers from having full access to health information. Patients' expectations for the highest possible quality and safety of care, therefore, may be at odds with their desire to limit provider access to their health records. Conversely, provider expectations that patients would willingly seek care for embarrassing conditions and disclose sensitive information may be at odds with patients' information privacy rights. An open dialogue between patients and providers will be necessary to balance respect for patient rights with provider need for patient information.

Designing a patient-centered user interface for access decisions about EHR data: implications from patient interviews.

BACKGROUND: Electronic health records change the landscape of patient data sharing and privacy by increasing the amount of information collected and stored and the number of potential recipients. Patients desire granular control over who receives what information in their electronic health record (EHR), but there are no current patient interfaces that allow them to record their preferences for EHR access. OBJECTIVE: Our aim was to derive the user needs of patients regarding the design of a user interface that records patients' individual choices about who can access data in their EHRs. DESIGN: We used semi-structured interviews. SETTING: The study was conducted in Central Indiana. PARTICIPANTS: Thirty patients with data stored in an EHR, the majority of whom (70 %) had highly sensitive health EHR data, were included in the study. APPROACH: We conducted a thematic and quantitative analysis of transcribed interview data. KEY RESULTS: Patients rarely knew what data were in their EHRs, but would have liked to know. They also wanted to be able to control who could access what information in their EHR and wanted to be notified when their data we re accessed. CONCLUSIONS: We derived six implications for the design of a patient-centered tool to allow individual choice in the disclosure of EHR: easy patient access to their EHRs; an overview of current EHR sharing permissions; granular, hierarchical control over EHR access; EHR access controls based on dates; contextual privacy controls; and notification when their EHRs are accessed.

Patient preferences in controlling access to their electronic health records: a prospective cohort study in primary care.

INTRODUCTION: Previous studies have measured individuals' willingness to share personal information stored in electronic health records (EHRs) with health care providers, but none has measured preferences among patients when they are allowed to determine the parameters of provider access. METHODS: Patients were given the ability to control access by doctors, nurses, and other staff in a primary care clinic to personal information stored in an EHR. Patients could restrict access to all personal data or to specific types of sensitive information, and could restrict access for a specific time period. Patients also completed a survey regarding their understanding of and opinions regarding the process. RESULTS: Of 139 eligible patients who were approached, 105 (75.5 %) were enrolled, and preferences were collected from all 105 (100 %). Sixty patients (57 %) did not restrict access for any providers. Of the 45 patients (43 %) who chose to limit the access of at least one provider, 36 restricted access only to all personal information in the EHR, while nine restricted access of some providers to a subset of the their personal information. Thirty-four (32.3 %) patients blocked access to all personal information by all doctors, nurses, and/or other staff, 26 (24.8 %) blocked access by all doctors and/or nurses, and five (4.8 %) denied access to all doctors, nurses, and staff. CONCLUSIONS: A significant minority of patients chose to restrict access by their primary care providers to personal information contained in an EHR, and few chose to restrict access to specific types of information. More research is needed to identify patient goals and understanding of the implications when facing decisions of this sort, and to identify the impact of patient education regarding information contained in EHRs and their use in the clinical care setting.

Provider responses to patients controlling access to their electronic health records: a prospective cohort study in primary care.

INTRODUCTION: Applying Fair Information Practice principles to electronic health records (EHRs) requires allowing patient control over who views their data. METHODS: We designed a program that captures patients' preferences for provider access to an urban health system's EHR. Patients could allow or restrict providers' access to all data (diagnoses, medications, test results, reports, etc.) or only highly sensitive data (sexually transmitted infections, HIV/AIDS, drugs/alcohol, mental or reproductive health). Except for information in free-text reports, we redacted EHR data shown to providers according to patients' preferences. Providers could "break the glass" to display redacted information. We prospectively studied this system in one primary care clinic, noting redactions and when users "broke the glass," and surveyed providers about their experiences and opinions. RESULTS: Eight of nine eligible clinic physicians and all 23 clinic staff participated. All 105 patients who enrolled completed the preference program. Providers did not know which of their patients were enrolled, nor their preferences for accessing their EHRs. During the 6-month prospective study, 92 study patients (88 %) returned 261 times, during which providers viewed their EHRs 126 times (48 %). Providers "broke the glass" 102 times, 92 times for patients not in the study and ten times for six returning study patients, all of whom had restricted EHR access. Providers "broke the glass" for six (14 %) of 43 returning study patients with redacted data vs. zero among 49 study patients without redactions (p = 0.01). Although 54 % of providers agreed that patients should have control over who sees their EHR information, 58 % believed restricting EHR access could harm provider-patient relationships and 71 % felt quality of care would suffer. CONCLUSIONS: Patients frequently preferred restricting provider access to their EHRs. Providers infrequently overrode patients' preferences to view hidden data. Providers believed that restricting EHR access would adversely impact patient care. Applying Fair Information Practice principles to EHRs will require balancing patient preferences, providers' needs, and health care quality.

Age-related differences in learning incidental, environmental information.

Incidental task structure is consistent, potentially beneficial, information that is not necessary for successful task performance (i.e., is seemingly unrelated to the task). The authors investigated whether incidental task structure was differentially beneficial to younger and older adults. Across three experiments, 122 participants searched for targets among stimuli laid upon different patterns, such that certain patterns correlated with target location at varying degrees of consistency. An age-related difference was identified in the ability to learn an incidental structure under certain conditions and a strategy explanation for the difference was investigated. When older adults' were encouraged to orient at least some degree of attention toward the predictive information, learning occurred. Older adults are capable of learning incidental, environmental information but their learning was not identical to younger adults'. Younger adults showed performance benefits when provided with incidental task structure, but older adults may need to be made explicitly aware before it is useful.

Evaluation framework for selecting wearable activity monitors for research.

BACKGROUND: Wearable devices that support activity tracking and other measurements hold great potential to increase awareness of health behaviors and support the management of chronic health conditions. There is a scarcity of guidance for researchers of all disciplines when planning new studies to evaluate and select technologies appropriate for study purpose, population, and overall context. The aim of this study was to develop and test an evaluation framework to rapidly and systematically evaluate and select consumer-grade wearable devices that serve individual study needs in preparation for evaluations with target populations. METHODS: The wearable evaluation framework was defined based on published literature and past research experiences of the research team. We tested the framework with example case studies to select devices for two different research projects focused on aging-in-place and gestational diabetes. We show how knowledge of target population and research goals help prioritize application of the criteria to inform device selection and how project requirements inform sequence of criteria application. RESULTS: The framework for wearable device evaluation includes 27 distinct evaluation criteria: 12 for everyday use by users, 6 on device functionality, and 9 on infrastructure for developing the research infrastructure required to obtain the data. We evaluated 10 devices from four vendors. After prioritizing the framework criteria based on the two example case studies, we selected the Withings Steele HR, Garmin Vivosmart HR+ and Garmin Forerunner 35 for further evaluation through user studies with the target populations. CONCLUSIONS: The aim of this paper was to develop and test a framework for researchers to rapidly evaluate suitability of consumer grade wearable devices for specific research projects. The use of this evaluation framework is not intended to identify a definitive single best device, but to systematically narrow the field of potential device candidates for testing with target study populations. Future work will include application of the framework within different research projects for further refinement.

Continuous Detection of Physiological Stress with Commodity Hardware.

Timely detection of an individual's stress level has the potential to improve stress management, thereby reducing the risk of adverse health consequences that may arise due to mismanagement of stress. Recent advances in wearable sensing have resulted in multiple approaches to detect and monitor stress with varying levels of accuracy. The most accurate methods, however, rely on clinical-grade sensors to measure physiological signals; they are often bulky, custom made, and expensive, hence limiting their adoption by researchers and the general public. In this article, we explore the viability of commercially available off-the-shelf sensors for stress monitoring. The idea is to be able to use cheap, nonclinical sensors to capture physiological signals and make inferences about the wearer's stress level based on that data. We describe a system involving a popular off-the-shelf heart rate monitor, the Polar H7; we evaluated our system with 26 participants in both a controlled lab setting with three well-validated stress-inducing stimuli and in free-living field conditions. Our analysis shows that using the off-the-shelf sensor alone, we were able to detect stressful events with an F1-score of up to 0.87 in the lab and 0.66 in the field, on par with clinical-grade sensors.

Investigating Contextual Cues as Indicators for EMA Delivery.

In this work, we attempt to determine whether the contextual information of a participant can be used to predict whether the participant will respond to a particular Ecological Momentary Assessment (EMA) trigger. We use a publicly available dataset for our work, and find that by using basic contextual features about the participant's activity, conversation status, audio, and location, we can predict if an EMA triggered at a particular time will be answered with a precision of 0.647, which is significantly higher than a baseline precision of 0.41. Using this knowledge, the researchers conducting field studies can efficiently schedule EMAs and achieve higher response rates.

Designing Consumer Health Technologies for the Treatment of Patients With Depression: A Health Practitioner's Perspective.

BACKGROUND: The consumer health technologies used by patients on a daily basis can be effectively leveraged to assist them in the treatment of depression. However, because treatment for depression is a collaborative endeavor, it is important to understand health practitioners' perspectives on the benefits, drawbacks, and design of such technologies. OBJECTIVE: The objective of this research was to understand how patients and health practitioners can effectively and successfully influence the design of consumer health treatment technologies for treating patients with depression. METHODS: A group of 10 health practitioners participated in individual semistructured contextual interviews at their offices. Health practitioners rated an a priori identified list of depression indicators using a 7-point Likert scale and generated a list of depression indicators. Finally, health practitioners were asked to rate the perceived usefulness of an a priori identified list of depression treatment technologies using a 7-point Likert scale. RESULTS: Of the 10 health practitioners interviewed, 5 (50%) were mental health practitioners, 3 (30%) nurses, and 2 (20%) general practitioners. A total of 29 unique depression indicators were generated by the health practitioners. These indicators were grouped into 5 high-level categories that were identified by the research team and 2 clinical experts: (1) daily and social functioning, (2) medication, (3) nutrition and physical activity, (4) demographics and environment, and (5) suicidal thoughts. These indicators represent opportunities for designing technologies to support health practitioners who treat patients with depression. The interviews revealed nuances of the different health practitioners' clinical practices and also barriers to using technology to guide the treatment of depression. These barriers included (1) technology that did not fit within the current practice or work infrastructure, (2) technology that would not benefit the current treatment process, (3) patients forgetting to use the technology, and (4) patients not being able to afford the technology. CONCLUSIONS: In order to be successful in the treatment of depression, consumer health treatment technologies must address health practitioners' technology concerns early on in the design phase, account for the various types of health practitioners, treatment methods, and clinical practices, and also strive to seamlessly integrate traditional and nontraditional depression indicators within various health practitioners' clinical practices.

Patients want granular privacy control over health information in electronic medical records.

OBJECTIVE: To assess patients' desire for granular level privacy control over which personal health information should be shared, with whom, and for what purpose; and whether these preferences vary based on sensitivity of health information. MATERIALS AND METHODS: A card task for matching health information with providers, questionnaire, and interview with 30 patients whose health information is stored in an electronic medical record system. Most patients' records contained sensitive health information. RESULTS: No patients reported that they would prefer to share all information stored in an electronic medical record (EMR) with all potential recipients. Sharing preferences varied by type of information (EMR data element) and recipient (eg, primary care provider), and overall sharing preferences varied by participant. Patients with and without sensitive records preferred less sharing of sensitive versus less-sensitive information. DISCUSSION: Patients expressed sharing preferences consistent with a desire for granular privacy control over which health information should be shared with whom and expressed differences in sharing preferences for sensitive versus less-sensitive EMR data. The pattern of results may be used by designers to generate privacy-preserving EMR systems including interfaces for patients to express privacy and sharing preferences. CONCLUSIONS: To maintain the level of privacy afforded by medical records and to achieve alignment with patients' preferences, patients should have granular privacy control over information contained in their EMR.

DigiSwitch: a device to allow older adults to monitor and direct the collection and transmission of health information collected at home.

Home monitoring represents an appealing alternative for older adults considering out-of-home long term care and an avenue for informal caregivers and health care providers to gain decision-critical information about an older adults' health and well-being. However, privacy concerns about having 24/7 monitoring, especially video monitoring, in the home environment have been cited as a major barrier in the design of home monitoring systems. In this paper we describe the design and evaluation of "DigiSwitch", a medical system designed to allow older adults to view information as it is collected about them and temporarily cease transmission of data for privacy reasons. Results from a series of iterative user studies suggest that control over the transmission of monitoring data from the home is helpful for maintaining user privacy. The studies demonstrate that older adults are able to use the DigiSwitch system to monitor and direct the collection and transmission of health information in their homes, providing these participants with a way to simultaneously maintain privacy and benefit from home monitoring technology.

Privacy Concerns and Disclosure Behavior in a Health Setting.

Health care practitioners need complete and accurate information to provide quality care to their patients. However, health information is considered to be highly private. Patients may have concerns about disclosing such information, especially if asked to provide this information using technology. The goal of this study was to investigate how participants' experience with a technology affect their level of disclosure in a health setting. Specifically, we were interested in understanding how the use of a health database system influences the disclosure of private health information. We asked 12 younger and 12 older adults to interact with a computerized health data entry system and then to rate the completeness and accuracy of their intended disclosures. Results indicate that, for the most part, participants would provide complete and accurate information using such a system. Younger adults were less likely than older adults to intend to disclose sensitive information, suggesting that additional information gathering may be appropriate for younger adults. The importance of providing a reason for the request of each piece of health information is discussed in relation to the setting where information is gathered.

Privacy and Technology: Folk Definitions and Perspectives.

In this paper we present preliminary results from a study of individual differences in privacy beliefs, as well as relate folk definitions of privacy to extant privacy theory. Focus groups were conducted with young adults aged 18-28 and older adults aged 65-75. Participants first shared their individual definitions of privacy, followed by a discussion of privacy in six scenarios chosen to represent a range of potentially invasive situations. Taken together, Westin's and Altman's theories of privacy accounted for both younger and older adults' ideas about privacy, however, neither theory successfully accounted for findings across all age and gender groups. Whereas males tended to think of privacy in terms of personal needs and convenience, females focused more on privacy in terms of others, respecting privacy rights, and safety. Older adults tended to be more concerned about privacy of space rather than information privacy. Initial results reinforce the notion that targeting HCI design to the user population, even with respect to privacy, is critically important.