Abstract

Background Evidence suggests that health care data sharing may strengthen care coordination, improve quality and safety, and reduce costs. However, to achieve efficient and meaningful adoption of health care data-sharing initiatives, it is necessary to engage all stakeholders, from health care professionals to patients. Although previous work has assessed health care professionals’ perceptions of data sharing, perspectives of the general public and particularly of seldom heard groups have yet to be fully assessed. Objective This study aims to explore the views of the public, particularly their hopes and concerns, around health care data sharing. Methods An original, immersive public engagement interactive experience was developed—The Can of Worms installation—in which participants were prompted to reflect about data sharing through listening to individual stories around health care data sharing. A multidisciplinary team with expertise in research, public involvement, and human-centered design developed this concept. The installation took place in three separate events between November 2018 and November 2019. A combination of convenience and snowball sampling was used in this study. Participants were asked to fill self-administered feedback cards and to describe their hopes and fears about the meaningful use of data in health care. The transcripts were compiled verbatim and systematically reviewed by four independent reviewers using the thematic analysis method to identify emerging themes. Results Our approach exemplifies the potential of using interdisciplinary expertise in research, public involvement, and human-centered design to tell stories, collect perspectives, and spark conversations around complex topics in participatory digital medicine. A total of 352 qualitative feedback cards were collected, each reflecting participants’ hopes and fears for health care data sharing. Thematic analyses identified six themes under hopes: enablement of personal access and ownership, increased interoperability and collaboration, generation of evidence for better and safer care, improved timeliness and efficiency, delivery of more personalized care, and equality. The five main fears identified included inadequate security and exploitation, data inaccuracy, distrust, discrimination and inequality, and less patient-centered care. Conclusions This study sheds new light on the main hopes and fears of the public regarding health care data sharing. Importantly, our results highlight novel concerns from the public, particularly in terms of the impact on health disparities, both at international and local levels, and on delivering patient-centered care. Incorporating the knowledge generated and focusing on co-designing solutions to tackle these concerns is critical to engage the public as active contributors and to fully leverage the potential of health care data use.

An interpretation of the effect of resin molecular weight on the dissolution of Novolak is offered. It is based on Eyring's transition state theory and on the percolation model of Novolak dissolution. The rate-determining step of Novolak dissolution is the deprotonation of phenol by base at the front edge of the penetration zone. In order for this reaction to occur at a particular site, an ion pair of base must appear there, and to make this possible, all base ions of the corresponding percolation channel have to move forward in synchronism. That requires the simultaneous thermal activation of all the sites of the channel. At this point the mechanism of energy transport intervenes: In a system of polymer chains, thermal (vibrational) energy propagates much faster along the chains than between them, and the critical energy fluctuations needed for the activation of a site will reach this site almost exclusively via the chain to which the site belongs. It can be shown that the probability that a particular site will receive an activating quantum is inversely proportional to chain length. The probability that all sites of a percolation channel will be activated simultaneously is inversely proportional to chain length to a power that is the number of sites involved in the move. The probability of this event decreases steeply with chain length, as is observed. These principles lead to a quantitative description of the dissolution of Novolak films as a function of the molecular weight of the resin.

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A widespread “tale of terror” amongst those seeking social change is that people in modern Western societies are caught in a neo-liberal paradigm and have come to care most about materialism, individual success and status. Our research attempted to challenge this tale. Study 1 involved New Zealand participants (N = 1085) from largely, but not exclusively, left-leaning groups. We used an open-ended process to identify their “infinite” values (that which they consider of value for its own sake); and found these concerned connection to people and other life forms, expression, nature, personal strengths, vitality, and spirituality. Systems and regulations, success and status, money, ownership and domination were named as of “finite” value (of value because of what they signify or enable). These findings suggest that our participants readily distinguished between what is inherently valuable and what is of instrumental value or signifies social status. Study 2 (N = 121) investigated participants’ responses to a word cloud that displayed the infinite values identified in Study 1. These were predominantly a sense of belonging to a human community, reassurance, and feeling uplifted and hopeful. We suggest that the word cloud offered a “tale of joy” showing that, contrary to standard neo-liberal rhetoric, people do care deeply about the common good. We also suggest that such a tale is critical to social movements that depend on a sense of collective hope.

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We propose a general barrier theory as an evolutionary framework for understanding coevolutionary effects of conflicts of interest in natural and human systems. It is generalized from the barrier theory of cancer, which describes how cancer develops through the evasion of mechanisms, that block unregulated cellular reproduction and survival. Barriers are naturally evolved or artificially implemented mechanisms for blocking exploitation; restraints are mechanisms that impede but do not block exploitation. When conflicts of interest arise, selection will favor exploiters that are capable of overcoming barriers and restraints. When barriers are in place, they halt, at least temporarily, coevolutionary arms races (the Red Queen can stop running). Barriers occur in a broad spectrum of interactions characterized by conflicts of interest: barriers to cellular survival (apoptosis) and reproduction (cell cycle arrest) may block a virus from replicating its genome through reproduction of its host cell. Vaccines may completely protect against targeted pathogens. A plant may escape herbivory by evolving defensive chemicals that block herbivory. Obligate mutualisms may evolve when barriers to horizontal transmission favor symbionts that increasingly lose mechanisms that contribute to horizontal transmission. Here, we show how the barrier theory applies across a spectrum of natural and social systems.