Promise and Perils of Large Language Models for Cancer Survivorship and Supportive Care.

A call to action to bring stakeholders together to plan for the future of LLM-enhanced cancer survivorship.

Perspectives of People With Cancer or Hereditary Cancer Risk on the Use and Value of Online Peer Support.

Purpose: People with cancer routinely seek information and support in peer groups online. While peer communities constitute a major component of the health care landscape, they exist in isolation from clinical and research institutions. This study aimed to explore how and why cancer patients utilize online peer support groups and how they might be improved. Methods: A convenience sample of members of 6 closed Facebook cancer peer support groups (n=291) participated in an online needs assessment survey. We further conducted semi-structured interviews with 14 members and 6 moderator-patients, hand-coding the free-text responses and interview transcripts. Results: Group participation was largely motivated by the desire to exchange information (79%) and to connect with others sharing the same condition (76%). Among study participants, 40% indicated they did not get information or support from any other online or offline organizations, 60% indicated they had few concerns with Facebook peer support groups, 84% indicated it was at least somewhat important that their health information and posts remain private, and 75% desired more input from experts in order to access evidence-based information and curb misinformation. About half wanted more group moderation, and moderators themselves expressed an urgent need for training and support. Conclusions: While online peer groups are a commonly utilized care component for many people with cancer or hereditary cancer risk and serve as a primary source of condition information, many participants desired more expert involvement in and moderation of groups. Privacy and security of health information was another key need expressed.

So You Want to Build Your Disease's First Online Patient Registry: An Educational Guide for Patient Organizations Based on US and European Experience.

Patient registries fulfill a number of key roles for clinicians, researchers, non-profit organizations, payers, and policy makers. They can help the field understand the natural history of a condition, determine the effectiveness of interventions, measure safety, and audit the quality of care provided. Successful registries in cystic fibrosis, Duchenne's muscular dystrophy, and other rare diseases have become a model for accelerating progress. However, the complex tasks required to develop a modern registry can seem overwhelming, particularly for those who are not from a technical background. In this Education article, a team of co-authors from across patient advocacy, technology, privacy, and commercial perspectives who have worked on a number of such projects offer a "Registry 101" primer to help get started. We will outline the promise and potential of patient registries with worked case examples, identify some of the key technical considerations you will need to consider, describe the type of data you might want to collect, consider privacy risks to protect your users, sketch out some of the paths towards long-term financial sustainability we have observed, and conclude with plans to mitigate some of the challenges that can occur and signpost interested readers to further resources. While rapid growth in the digital health market has presented numerous opportunities to those at the beginning of their journey, it is important to start with the long-term goals in mind and to benefit from the learnings of those who have walked this path before.

Advancing Digital Health Innovation in Oncology: Priorities for High-Value Digital Transformation in Cancer Care.

Although health care delivery is becoming increasingly digitized, driven by the pursuit of improved access, equity, efficiency, and effectiveness, progress does not appear to be equally distributed across therapeutic areas. Oncology is renowned for leading innovation in research and in care; digital pathology, digital radiology, real-world data, next-generation sequencing, patient-reported outcomes, and precision approaches driven by complex data and biomarkers are hallmarks of the field. However, remote patient monitoring, decentralized approaches to care and research, "hospital at home," and machine learning techniques have yet to be broadly deployed to improve cancer care. In response, the Digital Medicine Society and Moffitt Cancer Center convened a multistakeholder roundtable discussion to bring together leading experts in cancer care and digital innovation. This viewpoint highlights the findings from these discussions, in which experts agreed that digital innovation is lagging in oncology relative to other therapeutic areas. It reports that this lag is most likely attributed to poor articulation of the challenges in cancer care and research best suited to digital solutions, lack of incentives and support, and missing standardized infrastructure to implement digital innovations. It concludes with suggestions for actions needed to bring the promise of digitization to cancer care to improve lives.

CLD4SDGs: Integrated assessment of progress and impacts on Sustainable Development Goals using Causal Loop Diagrams.

The United Nations' 2030 Agenda for sustainable development calls for meeting the global Sustainable Development Goals (SDGs) through local action and integrated approaches. We here describe a method developed to understand how local (un-)sustainable processes in coupled social-ecological systems contribute to or hinder meeting SDGs at the target-level in coupled social-ecological systems (SES). The steps include:•The construction of a causal-loop diagram (CLD) of the social-ecological processes that shape system dynamics•CLD simplification for the purpose of the SDG analysis,•Steps of the SDG analysis. The methods combine and build on published examples of CLD and SDG analyses and includes instructions for the transparent documentation of the analyses to support review and further development of SDG-target analyses in complex social-ecological systems. A template for the documentation and analysis is provided in the supplementary materials.

Health advertising on Facebook: Privacy and policy considerations.

In this study, we analyzed health-advertising tactics of digital medicine companies (n = 5) to evaluate varying types of cross-site-tracking middleware (n = 32) used to extract health information from users. More specifically, we examine how browsing data can be exchanged between digital medicine companies and Facebook for advertising and lead generation and advertising purposes. Our analysis focused on companies offering services to patient advocates in the cancer community who frequently engage on social media. We co-produced this study with public cancer advocates leading or participating in breast cancer groups on Facebook. Following our analysis, we raise policy questions about what constitutes a health privacy breach based on existing federal laws such as the Health Breach Notification Rule and The HIPAA Privacy Rule. We discuss how these common marketing practices enable surveillance and targeting of medical ads to vulnerable patient populations without consent.

Hidden treasures: Human-made aquatic ecosystems harbour unexplored opportunities.

Artificial water bodies like ditches, fish ponds, weirs, reservoirs, fish ladders, and irrigation channels are usually constructed and managed to optimize their intended purposes. However, human-made aquatic systems also have unintended consequences on ecosystem services and biogeochemical cycles. Knowledge about their functioning and possible additional ecosystem services is poor, especially compared to natural ecosystems. A GIS analysis indicates that currently only ~ 10% of European surface waters are covered by the European Water Framework directive, and that a considerable fraction of the excluded systems are likely human-made aquatic systems. There is a clear mismatch between the high possible significance of human-made water bodies and their low representation in scientific research and policy. We propose a research agenda to build an inventory of human-made aquatic ecosystems, support and advance research to further our understanding of the role of these systems in local and global biogeochemical cycles as well as to identify other benefits for society. We stress the need for studies that aim to optimize management of human-made aquatic systems considering all their functions and to support programs designed to overcome barriers of the adoption of optimized management strategies.

Was Lates late? A null model for the Nile perch boom in Lake Victoria.

Nile perch (Lates niloticus) suddenly invaded Lake Victoria between 1979 and 1987, 25 years after its introduction in the Ugandan side of the lake. Nile perch then replaced the native fish diversity and irreversibly altered the ecosystem and its role to lakeshore societies: it is now a prised export product that supports millions of livelihoods. The delay in the Nile perch boom led to a hunt for triggers of the sudden boom and generated several hypotheses regarding its growth at low abundances--all hypotheses having important implications for the management of Nile perch stocks. We use logistic growth as a parsimonious null model to predict when the Nile perch invasion should have been expected, given its growth rate, initial stock size and introduction year. We find the first exponential growth phase can explain the timing of the perch boom at the scale of Lake Victoria, suggesting that complex mechanisms are not necessary to explain the Nile perch invasion or its timing. However, the boom started in Kenya before Uganda, indicating perhaps that Allee effects act at smaller scales than that of the whole Lake. The Nile perch invasion of other lakes indicates that habitat differences may also have an effect on invasion success. Our results suggest there is probably no single management strategy applicable to the whole lake that would lead to both efficient and sustainable exploitation of its resources.

The resilience and resistance of an ecosystem to a collapse of diversity.

Diversity is expected to increase the resilience of ecosystems. Nevertheless, highly diverse ecosystems have collapsed, as did Lake Victoria's ecosystem of cichlids or Caribbean coral reefs. We try to gain insight to this paradox, by analyzing a simple model of a diverse community where each competing species inflicts a small mortality pressure on an introduced predator. High diversity strengthens this feedback and prevents invasion of the introduced predator. After a gradual loss of native species, the introduced predator can escape control and the system collapses into a contrasting, invaded, low-diversity state. Importantly, we find that a diverse system that has high complementarity gains in resilience, whereas a diverse system with high functional redundancy gains in resistance. Loss of resilience can display early-warning signals of a collapse, but loss of resistance not. Our results emphasize the need for multiple approaches to studying the functioning of ecosystems, as managing an ecosystem requires understanding not only the threats it is vulnerable to but also pressures it appears resistant to.

Collapse and reorganization of a food web of Mwanza Gulf, Lake Victoria.

Lake Victoria in East Africa is the world's second largest freshwater system. Over the past century the ecosystem has undergone drastic changes. Some 30 years after the introduction of Nile perch (Lates niloticus) and Nile tilapia (Oreochromis niloticus) in the 1950s, the highly diverse community of native haplochromines collapsed, leaving a system dominated by only four species: the native cyprinid dagaa (Rastrineobola argentea) and shrimp (Caridina nilotica), as well as the introduced Nile perch and Nile tilapia. More recently, an unexpected resurgence of haplochromines has been reported. To understand these changes in terms of ecosystem functioning and of changes in growth of trophic groups, we created mass balances of the food web near Mwanza, Tanzania, before, during, and after the Nile perch boom (1977, 1987, and 2005), using the application ECOPATH. We connected these mass balances with a dynamic model assuming linear trends in net growth rates of the trophic groups. Our analysis suggests that the Nile perch boom initially altered the biomass distribution over trophic levels. Also, results indicate that not only fishing but also changes at the detritivores' trophic level might have played an important role in driving changes in the system. Both the mass balances and the dynamic model connecting them reveal that, after a major distortion during the Nile perch boom, the biomass distribution over the main trophic levels had largely recovered its original (1977) state by 2005. However, no such return appeared in terms of community structure. Biodiversity in the new state is dramatically lower, consisting of introduced species and a few native surviving species. We conclude that at an aggregate level Lake Victoria's ecosystem has proved to be resilient in the sense that its overall trophic structure has apparently recovered after a major perturbation. By contrast, its intricate functional structure and associated biodiversity have proved to be fragile and seem unlikely to recover.

Temporal characteristics of lower extremity moment generation in children with cerebral palsy.

Lower extremity weakness has been documented in children with cerebral palsy (CP). However, the temporal characteristics of moment generation have not been characterized, and they may be important to function. This study tested ankle, knee, and hip flexion and extension moment generation capabilities in children with CP and in able-bodied children. Maximum voluntary isometric contractions (MVIC), the maximum rates of moment development and relaxation, and the time to produce and reduce the moments were quantified. Relationships between the temporal measures, Gross Motor Function Measure-66 (GMFM-66), and MVICs were also examined. Children with CP had significantly reduced MVICs, maximum development, and relaxation rates, and increased times to produce and reduce moments. The maximum rates of moment development and relaxation at some joints were correlated with the GMFM-66 and MVICs. These results suggest that both the magnitude and temporal characteristics of moment generation need to be targeted during therapeutic interventions for children with CP.