Building the case for actionable ethics in digital health research supported by artificial intelligence

The digital revolution is disrupting the ways in which health research is conducted, and subsequently, changing healthcare. Direct-to-consumer wellness products and mobile apps, pervasive sensor technologies and access to social network data offer exciting opportunities for researchers to passively observe and/or track patients ‘in the wild’ and 24/7. The volume of granular personal health data gathered using these technologies is unprecedented, and is increasingly leveraged to inform personalized health promotion and disease treatment interventions. The use of artificial intelligence in the health sector is also increasing. Although rich with potential, the digital health ecosystem presents new ethical challenges for those making decisions about the selection, testing, implementation and evaluation of technologies for use in healthcare. As the ‘Wild West’ of digital health research unfolds, it is important to recognize who is involved, and identify how each party can and should take responsibility to advance the ethical practices of this work. While not a comprehensive review, we describe the landscape, identify gaps to be addressed, and offer recommendations as to how stakeholders can and should take responsibility to advance socially responsible digital health research

African-American patients with cancer Talking About Clinical Trials (TACT) with oncologists during consultations: evaluating the efficacy of tailored health messages in a randomised controlled trial—the TACT study protocol

Introduction Low rates of accrual of African-American (AA) patients with cancer to therapeutic clinical trials (CTs) represent a serious and modifiable racial disparity in healthcare that impedes the development of promising cancer therapies. Suboptimal physician–patient consultation communication is a barrier to the accrual of patients with cancer of any race, but communication difficulties are compounded with AA patients. Providing tailored health messages (THM) to AA patients and their physician about CTs has the potential to improve communication, lower barriers to accrual and ameliorate health disparities. Objective (1) Demonstrate the efficacy of THM to increase patient activation as measured by direct observation. (2) Demonstrate the efficacy of THM to improve patient outcomes associated with barriers to AA participation. (3) Explore associations among preconsultation levels of: (A) trust in medical researchers, (B) knowledge and attitudes towards CTs, (C) patient-family member congruence in decision-making, and (D) involvement/information preferences, and group assignment. Methods and analysis First, using established methods, we will develop THM materials. Second, the efficacy of the intervention is determined in a 2 by 2 factorial randomised controlled trial to test the effectiveness of (1) providing 357 AA patients with cancer with THM with 2 different ‘depths’ of tailoring and (2) either providing feedback to oncologists about the patients\u27 trial THM or not. The primary analysis compares patient engaged communication in 4 groups preconsultation and postconsultation. Ethics and dissemination This study was approved by the Virginia Commonwealth University Institutional Review Board. To facilitate use of the THM intervention in diverse settings, we will convene ‘user groups’ at 3 major US cancer centres. To facilitate dissemination, we will post all materials and the implementation guide in publicly available locations

Empowering cultural heritage professionals with tools for authoring and deploying personalised visitor experiences

This paper presents an authoring environment, which supports cultural heritage professionals in the process of creating and deploying a wide range of different personalised interactive experiences that combine the physical (objects, collection and spaces) and the digital (multimedia content). It is based on a novel flexible formalism that represents the content and the context as independent from one another and allows recombining them in multiple ways thus generating many different interactions from the same elements. The authoring environment was developed in a co-design process with heritage stakeholders and addresses the composition of the content, the definition of the personalisation, and the deployment on a physical configuration of bespoke devices. To simplify the editing while maintaining a powerful representation, the complex creation process is deconstructed into a limited number of elements and phases, including aspects to control personalisation both in content and in interaction. The user interface also includes examples of installations for inspiration and as a means for learning what is possible and how to do it. Throughout the paper, installations in public exhibitions are used to illustrate our points and what our authoring environment can produce. The expressiveness of the formalism and the variety of interactive experiences that could be created was assessed via a range of laboratory tests, while a user-centred evaluation with over 40 cultural heritage professionals assessed whether they feel confident in directly controlling personalisation

A Qualitative Case Study: Exploring the Application of Physiological Measures in Prelinguistic AAC Intervention

Background: The goal of completing this research was to explore the potential promise of the novel approach of applying physiological measures to AAC intervention for individuals with intellectual and developmental disabilities (IDD) who are prelinguistic communicators. Purpose: The purpose of this project was to investigate the primary forms of prelinguistic communication and aided AAC used by a family with an individual with IDD and how taking physiological measurements might improve AAC intervention. Methodology: One family with an individual diagnosed with profound intellectual and multiple disabilities (PIMD) who primarily utilized prelinguistic communication and frequently uses aided, linguistic augmentative and alternative communication (AAC) participated. The study used a qualitative case study method. The individual who participated in this case study was an adult male, twenty-seven years of age with Apraxia of Speech and autism spectrum disorder (ASD). Due to this individual’s diagnoses, the interview took place with the individual’s primary caretaker, his mother. This interview included questions taken from an interview guide designed for this study. A computer and phone were utilized to obtain responses during the interview. A single interview virtually took place via Zoom with the family and individual with PIMD. The information collected during the interview process was analyzed and reviewed with consideration of the current research regarding physiological measures for individuals with IDD. Results: The participating mother reported benefits of AAC for interactions in her family including her son. The participant reported little interest in utilizing physiological measures during AAC intervention. She listed several reasons as to why AAC was beneficial for her family and did not feel any more could be contributed to AAC intervention that would yield real progress and/or improvement. Discussion: Through the information obtained, insight was gained in general regarding AAC intervention for individuals with IDD as perceived by their families. Insight was also gained regarding the potential hesitancy of some families to see value in uptake around including physiological information in AAC intervention. The good news is such hesitancy reflects positive feelings toward the status quo of AAC in the family. Research with a larger number of families is needed to understand whether this attitude is held by the majority of families, or whether it is uncommon. Further, more research is needed to understand factors influencing this opinion. Would her attitude change if provided with knowledge about how physiological information can be used in concert with observable behaviors and its potential utility with less familiar communication partners

Towards an Effective Organization-Wide Bulk Email System

Bulk email is widely used in organizations to communicate messages to employees. It is an important tool in making employees aware of policies, events, leadership updates, etc. However, in large organizations, the problem of overwhelming communication is widespread. Ineffective organizational bulk emails waste employees' time and organizations' money, and cause a lack of awareness or compliance with organizations' missions and priorities. This thesis focuses on improving organizational bulk email systems by 1) conducting qualitative research to understand different stakeholders; 2) conducting field studies to evaluate personalization's effects on getting employees to read bulk messages; 3) designing tools to support communicators in evaluating bulk emails. We performed these studies at the University of Minnesota, interviewing 25 employees (both senders and recipients), and including 317 participants in total. We found that the university's current bulk email system is ineffective as only 22% of the information communicated was retained by employees. To encourage employees to read high-level information, we implemented a multi-stakeholder personalization framework that mixed important-to-organization messages with employee-preferred messages and improved the studied bulk email's recognition rate by 20%. On the sender side, we iteratively designed a prototype of a bulk email evaluation platform. In field evaluation, we found bulk emails' message-level performance helped communicators in designing bulk emails. We collected eye-tracking data and developed a neural network technique to estimate how much time each message is being read using recipients' interactions with browsers only, which improved the estimation accuracy to 73%. In summary, this work sheds light on how to design organizational bulk email systems that communicate effectively and respect different stakeholders' value.Comment: PhD Thesi

Gender and Human-Machine Communication: Where Are We?

In this introduction to the fifth volume of the journal Human-Machine Communication, we present and discuss the five articles focusing on gender and human-machine communication. In this essay, we will analyze the theme of gender, including how this notion has historically and politically been set up, and for what reasons. We will start by considering gender in in-person communication, then we will progress to consider what happens to gender when it is mediated by the most important ICTs that preceded HMC: the telephone, mobile phone, and computer-mediated communication (CMC). We outline the historical framework necessary to analyze the last section of the essay, which focuses on gender in HMC. In the conclusion, we will set up some final sociological and political reflections on the social meaning of these technologies for gender and specifically for women

The Affective Perceptual Model: Enhancing Communication Quality for Persons with PIMD

Methods for prolonged compassionate care for persons with Profound Intellectual and Multiple Disabilities (PIMD) require a rotating cast of import people in the subjects life in order to facilitate interaction with the external environment. As subjects continue to age, dependency on these people increases with complexity of communications while the quality of communication decreases. It is theorized that a machine learning (ML) system could replicate the attuning process and replace these people to promote independence. This thesis extends this idea to develop a conceptual and formal model and system prototype. The main contributions of this thesis are: (1) proposal of a conceptual and formal model for using machine learning to attune to unique communications from subjects with PIMD, (2) implementation of the system with both hardware and software components, and (3) modeling affect recognition in individuals based on the sensors from the hardware implementation

Can you persuade 100,000 strangers on social media? The effect of self-disclosure on persuasion

Thesis (Ph.D.)--Boston UniversityDisclosure of personal stories and self-relevant emotions is an essential part of our daily conversations. We frequently talk about our thoughts, feelings, and emotions with our family, friends, and, in an online setting, even with strangers. Despite the frequent occurrence of self-disclosure on social media, research that examines the influence of self-disclosure on the persuasive impact of a speaker is surprisingly limited. Working to understand persuasion in social media, this dissertation looks at self- disclosure (i.e., the act of revealing personal information which ranges from demographic information to feelings, thoughts, values, experiences, and self-concepts) as a core construct. In particular, across two essays, this dissertation research focuses on how bloggers can use disclosure of their feelings, thoughts, and life concerns to increase trust and build relationships with their audience, thus increasing the persuasive impact of their word-of-mouth messages. The first essay is a qualitative study ofbloggers' communication practices, in which postings on a variety ofblogs were analyzed. Drawing on both the communication and social psychology literatures, this essay develops a conceptual framework of how blogs can be categorized based on audiences' perceptions and how bloggers use different strategies to shape or shift their audiences' perceptions and increase the persuasiveness of their messages. Specifically, it suggests that bloggers use two distinguishable communication strategies: (a) developing and sustaining an illusion of relationship between the blogger and the reader in order to individualize the communication and (b) maintaining a level of ambiguity in their commercial interests in order to conceal the commercial nature of some blogs. Tactics underlying the use of these strategies as well as the efficacy and ethics of these practices were discussed. The second essay examines how sharing of intimate self-disclosure (i.e., sharing ofa deeper level ofpersonal information that may potentially involve risk and a feeling of vulnerability) influences the communicator's ability to persuade. Across four studies, this essay demonstrates how a communicator's intimate self-disclosure is perceived and processed by their audience in different types of relationships (communal vs. exchange) and how it affects the persuasive impact of the message