Browsing by Subject "Privacy"
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Item At a Loss for Words: Using Performance to Explain How Friends Communicate About Infertility(2023-06) Binion, Kelsey Elizabeth; Brann, Maria; Beckman, Emily; Bute, Jennifer J.; Longtin, Krista J.In the United States, approximately one in five women are unable to get pregnant after one year of trying. Due to the pervasiveness of pronatalism in Western society, having a child is widely assumed to be a natural and expected part of womanhood. Society’s master narratives reinforce these ideals and stigmatize the experiences of women who have infertility. This multi-phase research study examined how women discuss their infertility journey with their friends. The study’s aims were to understand friendships within the context of infertility, how the relationship affects a woman’s identity, and the communicative behaviors used in conversations. Fifteen interviews were conducted with women who experienced or are experiencing infertility and had discussed their past or current challenges with a friend. Results of a phronetic iterative analysis suggested that women who have personal experience with infertility (a) disclose to close/best friends, (b) communicate their identity as “broken,” (c) desire emotional support, and (d) strategically navigate conversations as they encounter positive and negative messages. These results were transformed into a performance, which included six monologues and a talkback. The purpose of the arts-based methodology was to disseminate results and assess the performance’s impact. Seventy-three individuals attended one of the two performances in April 2023, and 50 attendees completed the post-performance evaluation. The quantitative results suggest that attendees felt informed about the complexities of infertility, gained a new perspective, received advice about how to have future conversations, and did not feel offended by the content. Through a thematic analysis, four themes emerged from the two talkback sessions and evaluation comments: being informed about infertility as a health condition, appreciating the theatrical format to learn, connecting to the performance to understand the illness experience, and feeling comfortable navigating conversations about infertility. Despite the variance in infertility experiences, friends are essential social support figures as women navigate infertility, and there are best practices when having a conversation, as demonstrated in the performance. This study’s implications include providing communication strategies to support women with infertility and recognizing that an arts-based methodology can highlight counterstories, inform about a stigmatized health issue, and engage the community.Item Biobanks and Electronic Health Records: Ethical and Policy Challenges in the Genomic Age(IU Center for Applied Cybersecurity Research, 2009-10) Meslin, Eric M.; Goodman, KennethIn this paper we discuss the ethical and policy challenges presented by the construction and use of biobanks and electronic health records systems, with a particular focus on how these resources implicate certain types of security concerns for patients, families, health care providers and institutions. These two technology platforms are selected for special emphasis in this paper for two reasons. First and foremost, there is a close connection between them. Indeed, of the many accepted definitions, this one from the German National Bioethics Commission provides a sense of this close connection and the great power and reflects the great power these two separate platforms provide to probe more deeply the connection between genotype and phenotype: "...[B]iobanks are defined as collections of samples of human bodily substances (e.g., cells, tissues, blood or DNA as the physical medium of genetic information) that are or can be associated with personal data and information on their donors." Second, these two topics implicate both clinical ethics issues (those arising at the bedside for health care providers and patients), and human research ethics issues (issues arising for scientists, research subjects, ethics review bodies and regulatory authorities). Both of these sub-specialty areas confront similar and complementary ethical issues; for example, issues arising from the nature and adequacy of informed consent, the sufficiency of systems to protect personal privacy and confidentiality, or the need to balance concerns relating to data security and the need to know. A growing research base supports calls for more attention to these issues, and yet current professional ethics frameworks and policy consultation methods are poorly organized and ill-equipped to anticipate and fully address ethical issues in health information technology generally, or to provide adequate ethical assessment of the tools that elicit these issues. Our strategy is to orient readers to the history and context of these issues, to frame several key challenges for researchers and policy makers, and then to close with several recommendations for next steps.Item Chapter 13: Intellectual Property Issues Raised by Email(2014) Smith, Michael B.; Hook, Sara Anne; Dossa, AlyItem Enhancing Critical Awareness of Health Information from Wearable Devices(2016-04-08) Kumari, VishakhaWith the advent of wearable health and fitness tracking devices, the way health care will be delivered will change because of the opportunity for people and providers to more easily track and respond to even small changes in a person’s heath status. Wearable devices perceive and record health information about users continuously and discreetly. One question is whether there is a distinction between information that may be less sensitive, such as how many steps someone walks, and more sensitive medical information, such as someone’s blood sugar or heart rate. The awareness of people about the distinction between non-sensitive versus sensitive information has to be analyzed, which will address how comfortable people are in sharing this information when they know the risks involved. Unfortunately, health information is not considered protected health information unless it is shared with doctors, hospitals or any third-party vendors (Business Associates) of these entities. These devices are not covered under the Health Care Portability and Accountability Act (HIPAA) and thus there can be little expectation of privacy or security as provided for under this legislation. Although not required, at least one major vendor for wearable devices has indicated that its devices are compliant with HIPAA, which results in questions about why this vendor chose to comply with HIPAA and why other vendors are not yet following suit. My research explores the perception of people with respect to how the information gathered from wearable and fitness tracking devices is used and shared by vendors and third parties and what options might need to be provided to users by vendors or mandated by law to increase the security and privacy of this information. As part of my research, I have reviewed the terms of service and other information for a selected number of devices. References 1. Meingast, M., Roosta, T., & Sastry, S. (2006). Security and privacy issues with health care information technology. In Engineering in Medicine and Biology Society, 2006. EMBS'06. 28th Annual International Conference of the IEEE (pp. 5453-5458). IEEE. 2. Motti, V. G., & Caine, K. (2015). Users’ Privacy Concerns About Wearables. In Financial Cryptography and Data Security (pp. 231-244). Springer Berlin Heidelberg.Item Examining the Legal Consciousness of Residence Life Staff(Association of College and University Housing Officers - International, 2018) Nguyễn, David Hòa Khoa; Collier, Joan; Watts, Angela; Cartwright, Camille; King-Kostelac, Amelia; School of EducationUnderstanding the law has become an integral part of the work of higher education professionals, especially residence life staff. For decades, courts have contributed an increasingly important role in shaping the litigious nature of society at large and within higher education (Greenleaf, 1982). Barr and Associates (1988) noted the increasingly major influence of the law on campus life. Even in the mid-1990s, Gehring and Penney (1995) highlighted the critical need to understand legal issues for those professionals entering the field of higher education and student affairs. Since Olivas (2013) found that higher education law is a rapidly changing area in the field, knowledge of the law is critical to anyone in a professional position in higher education. [Discussion questions developed by Amelia King-Kostelac.]Item Giving patients granular control of personal health information: Using an ethics “Points to Consider” to inform informatics system designers(http://dx.doi.org/10.1016/j.ijmedinf.2013.08.010, 2013-12) Meslin, Eric M.; Alpert, Sheri A.; Carroll, Aaron E.; Odell, Jere D.; Tierney, William M.; Schwartz, Peter H.OBJECTIVE: There are benefits and risks of giving patients more granular control of their personal health information in electronic health record (EHR) systems. When designing EHR systems and policies, informaticists and system developers must balance these benefits and risks. Ethical considerations should be an explicit part of this balancing. Our objective was to develop a structured ethics framework to accomplish this. METHODS: We reviewed existing literature on the ethical and policy issues, developed an ethics framework called a "Points to Consider" (P2C) document, and convened a national expert panel to review and critique the P2C. RESULTS: We developed the P2C to aid informaticists designing an advanced query tool for an electronic health record (EHR) system in Indianapolis. The P2C consists of six questions ("Points") that frame important ethical issues, apply accepted principles of bioethics and Fair Information Practices, comment on how questions might be answered, and address implications for patient care. DISCUSSION: The P2C is intended to clarify what is at stake when designers try to accommodate potentially competing ethical commitments and logistical realities. The P2C was developed to guide informaticists who were designing a query tool in an existing EHR that would permit patient granular control. While consideration of ethical issues is coming to the forefront of medical informatics design and development practices, more reflection is needed to facilitate optimal collaboration between designers and ethicists. This report contributes to that discussion.Item Intellectual Property Law in Cyberspace, 2nd ed. 2015 Cummulative Supplement(2015) Hook, Sara Anne; Smith, Michael B.; Dossa, AlyItem Lessons Learned: Beta-Testing the Digital Health Checklist for Researchers Prompts a Call to Action by Behavioral Scientists(JMIR, 2021-12-22) Bartlett Ellis, Rebecca; Wright, Julie; Soederberg Miller, Lisa; Jake-Schoffman, Danielle; Hekler, Eric B.; Goldstein, Carly M.; Arigo, Danielle; Nebeker, Camille; School of NursingDigital technologies offer unique opportunities for health research. For example, Twitter posts can support public health surveillance to identify outbreaks (eg, influenza and COVID-19), and a wearable fitness tracker can provide real-time data collection to assess the effectiveness of a behavior change intervention. With these opportunities, it is necessary to consider the potential risks and benefits to research participants when using digital tools or strategies. Researchers need to be involved in the risk assessment process, as many tools in the marketplace (eg, wellness apps, fitness sensors) are underregulated. However, there is little guidance to assist researchers and institutional review boards in their evaluation of digital tools for research purposes. To address this gap, the Digital Health Checklist for Researchers (DHC-R) was developed as a decision support tool. A participatory research approach involving a group of behavioral scientists was used to inform DHC-R development. Scientists beta-tested the checklist by retrospectively evaluating the technologies they had chosen for use in their research. This paper describes the lessons learned because of their involvement in the beta-testing process and concludes with recommendations for how the DHC-R could be useful for a variety of digital health stakeholders. Recommendations focus on future research and policy development to support research ethics, including the development of best practices to advance safe and responsible digital health research.Item mmFit: Low-Effort Personalized Fitness Monitoring Using Millimeter Wave(IEEE, 2022) Xie, Yucheng; Jiang, Ruizhe; Guo, Xiaonan; Wang, Yan; Cheng, Jerry; Chen, Yingying; Electrical and Computer Engineering, Purdue School of Engineering and TechnologyThere is a growing trend for people to perform work-outs at home due to the global pandemic of COVID-19 and the stay-at-home policy of many countries. Since a self-designed fitness plan often lacks professional guidance to achieve ideal outcomes, it is important to have an in-home fitness monitoring system that can track the exercise process of users. Traditional camera-based fitness monitoring may raise serious privacy concerns, while sensor-based methods require users to wear dedicated devices. Recently, researchers propose to utilize RF signals to enable non-intrusive fitness monitoring, but these approaches all require huge training efforts from users to achieve a satisfactory performance, especially when the system is used by multiple users (e.g., family members). In this work, we design and implement a fitness monitoring system using a single COTS mm Wave device. The proposed system integrates workout recognition, user identification, multi-user monitoring, and training effort reduction modules and makes them work together in a single system. In particular, we develop a domain adaptation framework to reduce the amount of training data collected from different domains via mitigating impacts caused by domain characteristics embedded in mm Wave signals. We also develop a GAN-assisted method to achieve better user identification and workout recognition when only limited training data from the same domain is available. We propose a unique spatialtemporal heatmap feature to achieve personalized workout recognition and develop a clustering-based method for concurrent workout monitoring. Extensive experiments with 14 typical workouts involving 11 participants demonstrate that our system can achieve 97% average workout recognition accuracy and 91% user identification accuracy.