Pricing through health apps generated data-Digital dividend as a game changer: Discrete choice experiment.

OBJECTIVES: The objective of this paper is to study under which circumstances wearable and health app users would accept a compensation payment, namely a digital dividend, to share their self-tracked health data. METHODS: We conducted a discrete choice experiment alternative, a separated adaptive dual response. We chose this approach to reduce extreme response behavior, considering the emotionally-charged topic of health data sales, and to measure willingness to accept. Previous experiments in lab settings led to demands for high monetary compensation. After a first online survey and two pre-studies, we validated four attributes for the final online study: monthly bonus payment, stakeholder handling the data (e.g., health insurer, pharmaceutical or medical device companies, universities), type of data, and data sales to third parties. We used a random utility framework to evaluate individual choice preferences. To test the expected prices of the main study for robustness, we assigned respondents randomly to one of two identical questionnaires with varying price ranges. RESULTS: Over a period of three weeks, 842 respondents participated in the main survey, and 272 respondents participated in the second survey. The participants considered transparency about data processing and no further data sales to third parties as very important to the decision to share data with different stakeholders, as well as adequate monetary compensation. Price expectations resulting from the experiment were high; pharmaceutical and medical device companies would have to pay an average digital dividend of 237.30€/month for patient generated health data of all types. We also observed an anchor effect, which means that people formed price expectations during the process and not ex ante. We found a bimodal distribution between relatively low price expectations and relatively high price expectations, which shows that personal data selling is a divisive societal issue. However, the results indicate that a digital dividend could be an accepted economic incentive system to gather large-scale, self-tracked data for research and development purposes. After the COVID-19 crisis, price expectations might change due to public sensitization to the need for big data research on patient generated health data. CONCLUSION: A continuing success of existing data donation models is highly unlikely. The health care sector needs to develop transparency and trust in data processing. An adequate digital dividend could be an effective long-term measure to convince a diverse and large group of people to share high-quality, continuous data for research purposes.

Escaped bait: Bull shark Carcharhinus leucas with an intentionally attached harness rig.

A 193 cm total length female bull shark Carcharhinus leucas was captured in Florida bearing intentionally attached materials which resembled a harness. Harness-type live bait rigs are commonly used for small baitfish; some anglers use such devices with small sharks when targeting large sharks and bony fish. Biofouling on the apparatus and the extent of the injuries indicated the material had likely been on the shark for several years. This case highlights the dangers of using these types of devices on juveniles of long-lived species that attain a large body size.

Monitoring functional status using a wearable real-time locating technology.

Sensor technologies enable real-time, continuous, and objective monitoring of activity and functioning in later life. In long-term care, timely assessment of functional status is needed to prevent falls and other acute events. However, the electronic forms and paper and pencil tools currently used are time-consuming and conducted too infrequently (e.g., every 6 months) to provide the sensitivity and specificity required. Staff are also unable to detect subtle changes in functioning through observation alone. The purpose of this paper is to discuss the use of a wearable real-time locating system that utilizes ultra wideband radio technology to continuously and objectively measure activity and aspects of functional status. This paper discusses the associated conceptualization and development of the scoring algorithms, raw data transformation, use of traditional paper and pencil tools and electronic health record data to validate sensor data, and other tips for those interested in this type of wearable sensor technology.

Owning Ethical Innovation: Claims about Commercial Wearable Brain Technologies.

The wearable neurotechnology market targets consumers with promises of cognitive benefit and personal wellness. Scientific evidence is essential to substantiate claims about utility, safety, and efficacy and for informed choice and public trust.

Research ethics for mobile sensing device use by vulnerable populations.

Devices equipped with sensors to track mobility, such as through Global Position Systems (GPS) and accelerometery, are increasingly being used for research. Following Canadian, US, and International guidelines there is a need to give special consideration when conducting research with vulnerable populations. This paper examines specific ethical concerns for conducting research with mobile sensing devices for use by vulnerable populations, considering aspects of both research design and research process. Drawing on insights from feminist design and aligned fields, such as participatory design and action research, we contend that any research design and process for working with vulnerable populations must be developed in collaboration with the particular groups and communities who are part of the research. As part of this process of collaborative research, we discuss risks in terms of the lack of control over data associated with choosing commercial devices, as well as practicality and obtrusiveness of devices for the wearer. We also discuss the significance of informed consent and refusal and issues relating to security and safety during research. As part of the collaborative research design and process, we argue that participants should be given as much control over their data as possible. Based on this discussion, we provide recommendations for researchers to consider, which are broadly relevant for research using mobile sensing devices but particularly significant in relation to vulnerable populations.

Who Is Responsible? A Man With Dementia Wanders From Home, Is Hit by a Train, and Dies.

The impact of dementia and Alzheimer's disease extends far beyond the healthcare needs of the person with dementia. As the disease progresses, individuals with dementia often require ongoing formal or informal care for their basic daily routine because of behavior changes and continuing loss of cognitive function. Most of the care for people with dementia takes place at home, and the unpaid, informal caregivers are often spouses or other relatives. Providing long-term informal care at home for someone with dementia is psychologically, physically, and financially draining. The tragedy described in this case elucidates the far-reaching societal impact of dementia care and the implicit health policy considerations. In 2007, a 91-year-old Japanese man with dementia was in the care of his wife when he wandered from home, was hit by a train, and died, immediately affecting the Central Japan Railway Company operations and, subsequently, legal practice as well as Japanese elder care policy. The railway sued the man's wife and son for negligence and lost revenue, winning both trials at the local and district courts. This ruling shocked families and caregivers in Japan, where care for elderly parents traditionally falls on the oldest son, and brought attention to the complex issues related to dementia care. A decade later, we revisit this case to provoke a renewed dialogue about the matrix of responsibilities and liabilities associated with caregiving; to illuminate the unmet needs of the person with dementia, as well as his or her informal caregivers; and the financial implications related to long-term care policy. We close with 2 practical suggestions which preserve the dignity of the individual and provide reassurance for caregivers.

Ethical Implications of User Perceptions of Wearable Devices.

Health Wearable Devices enhance the quality of life, promote positive lifestyle changes and save time and money in medical appointments. However, Wearable Devices store large amounts of personal information that is accessed by third parties without user consent. This creates ethical issues regarding privacy, security and informed consent. This paper aims to demonstrate users' ethical perceptions of the use of Wearable Devices in the health sector. The impact of ethics is determined by an online survey which was conducted from patients and users with random female and male division. Results from this survey demonstrate that Wearable Device users are highly concerned regarding privacy issues and consider informed consent as "very important" when sharing information with third parties. However, users do not appear to relate privacy issues with informed consent. Additionally, users expressed the need for having shorter privacy policies that are easier to read, a more understandable informed consent form that involves regulatory authorities and there should be legal consequences the violation or misuse of health information provided to Wearable Devices. The survey results present an ethical framework that will enhance the ethical development of Wearable Technology.