Challenges and solutions to system-wide use of precision oncology as the standard of care paradigm

The personalised oncology paradigm remains challenging to deliver despite technological advances in genomics-based identification of actionable variants combined with the increasing focus of drug development on these specific targets. To ensure we continue to build concerted momentum to improve outcomes across all cancer types, financial, technological and operational barriers need to be addressed. For example, complete integration and certification of the ‘molecular tumour board’ into ‘standard of care’ ensures a unified clinical decision pathway that both counteracts fragmentation and is the cornerstone of evidence-based delivery inside and outside of a research setting. Generally, integrated delivery has been restricted to specific (common) cancer types either within major cancer centres or small regional networks. Here, we focus on solutions in real-world integration of genomics, pathology, surgery, oncological treatments, data from clinical source systems and analysis of whole-body imaging as digital data that can facilitate cost-effectiveness analysis, clinical trial recruitment, and outcome assessment. This urgent imperative for cancer also extends across the early diagnosis and adjuvant treatment interventions, individualised cancer vaccines, immune cell therapies, personalised synthetic lethal therapeutics and cancer screening and prevention. Oncology care systems worldwide require proactive step-changes in solutions that include inter-operative digital working that can solve patient centred challenges to ensure inclusive, quality, sustainable, fair and cost-effective adoption and efficient delivery. Here we highlight workforce, technical, clinical, regulatory and economic challenges that prevent the implementation of precision oncology at scale, and offer a systematic roadmap of integrated solutions for standard of care based on minimal essential digital tools. These include unified decision support tools, quality control, data flows within an ethical and legal data framework, training and certification, monitoring and feedback. Bridging the technical, operational, regulatory and economic gaps demands the joint actions from public and industry stakeholders across national and global boundaries

Managing healthcare transformation towards P5 medicine (Published in Frontiers in Medicine)

Health and social care systems around the world are facing radical organizational, methodological and technological paradigm changes to meet the requirements for improving quality and safety of care as well as efficiency and efficacy of care processes. In this they’re trying to manage the challenges of ongoing demographic changes towards aging, multi-diseased societies, development of human resources, a health and social services consumerism, medical and biomedical progress, and exploding costs for health-related R&D as well as health services delivery. Furthermore, they intend to achieve sustainability of global health systems by transforming them towards intelligent, adaptive and proactive systems focusing on health and wellness with optimized quality and safety outcomes. The outcome is a transformed health and wellness ecosystem combining the approaches of translational medicine, 5P medicine (personalized, preventive, predictive, participative precision medicine) and digital health towards ubiquitous personalized health services realized independent of time and location. It considers individual health status, conditions, genetic and genomic dispositions in personal social, occupational, environmental and behavioural context, thus turning health and social care from reactive to proactive. This requires the advancement communication and cooperation among the business actors from different domains (disciplines) with different methodologies, terminologies/ontologies, education, skills and experiences from data level (data sharing) to concept/knowledge level (knowledge sharing). The challenge here is the understanding and the formal as well as consistent representation of the world of sciences and practices, i.e. of multidisciplinary and dynamic systems in variable context, for enabling mapping between the different disciplines, methodologies, perspectives, intentions, languages, etc. Based on a framework for dynamically, use-case-specifically and context aware representing multi-domain ecosystems including their development process, systems, models and artefacts can be consistently represented, harmonized and integrated. The response to that problem is the formal representation of health and social care ecosystems through an system-oriented, architecture-centric, ontology-based and policy-driven model and framework, addressing all domains and development process views contributing to the system and context in question. Accordingly, this Research Topic would like to address this change towards 5P medicine. Specifically, areas of interest include, but are not limited: • A multidisciplinary approach to the transformation of health and social systems • Success factors for sustainable P5 ecosystems • AI and robotics in transformed health ecosystems • Transformed health ecosystems challenges for security, privacy and trust • Modelling digital health systems • Ethical challenges of personalized digital health • Knowledge representation and management of transformed health ecosystems Table of Contents: 04 Editorial: Managing healthcare transformation towards P5 medicine Bernd Blobel and Dipak Kalra 06 Transformation of Health and Social Care Systems—An Interdisciplinary Approach Toward a Foundational Architecture Bernd Blobel, Frank Oemig, Pekka Ruotsalainen and Diego M. Lopez 26 Transformed Health Ecosystems—Challenges for Security, Privacy, and Trust Pekka Ruotsalainen and Bernd Blobel 36 Success Factors for Scaling Up the Adoption of Digital Therapeutics Towards the Realization of P5 Medicine Alexandra Prodan, Lucas Deimel, Johannes Ahlqvist, Strahil Birov, Rainer Thiel, Meeri Toivanen, Zoi Kolitsi and Dipak Kalra 49 EU-Funded Telemedicine Projects – Assessment of, and Lessons Learned From, in the Light of the SARS-CoV-2 Pandemic Laura Paleari, Virginia Malini, Gabriella Paoli, Stefano Scillieri, Claudia Bighin, Bernd Blobel and Mauro Giacomini 60 A Review of Artificial Intelligence and Robotics in Transformed Health Ecosystems Kerstin Denecke and Claude R. Baudoin 73 Modeling digital health systems to foster interoperability Frank Oemig and Bernd Blobel 89 Challenges and solutions for transforming health ecosystems in low- and middle-income countries through artificial intelligence Diego M. López, Carolina Rico-Olarte, Bernd Blobel and Carol Hullin 111 Linguistic and ontological challenges of multiple domains contributing to transformed health ecosystems Markus Kreuzthaler, Mathias Brochhausen, Cilia Zayas, Bernd Blobel and Stefan Schulz 126 The ethical challenges of personalized digital health Els Maeckelberghe, Kinga Zdunek, Sara Marceglia, Bobbie Farsides and Michael Rigb

An Exploration of the Life Coach in England: :A Multiple Case Study

Introduction: Life coaching is a nebulous and multi-faceted term reflecting a small area of practice within the wider coaching process. The unregulated nature of coaching and fragmented use of labels for coaching outside of executive and sports contexts supported exploration of the roles and responsibilities of life coaches and regulation. Consideration of coaching in relation to the helping professional informs the exploration of helping upon coach identity and the exploration of life coach personal wellbeing.Methodology/Methods: Using a systematic approach, a literature review was conducted to investigate how life coaching is perceived through a multiple-lens of enquiry within academic contexts, whilst the desk review explores perceptions of life coaching, the structure and content of coach training and the role of voluntary organisations. Data was collected using semi-structured interviews and reflective diary logs within a multiple case study design. Each case represents a holistic encapsulation of an individual life coach. Thematic analysis was conducted for each case, followed by a cross-case synthesis. COVID-19 impacted the methods used within the multiple case study and necessitated two phases of data collection. Findings: Perceptions of life coaching in relation to other coaching and helping contexts varies according to practitioner perception. Differences between academic investigation of life coaching and practice are found in relation to how impact of practice is measured. Practitioner responsibilities include a commitment to developing self-awareness, ensuring fitness to practice and appreciation of individuality. Professional standards for practice are perceived as optional but standardisation of practice is welcomed. The values and attributes of the individual life coach forms an internal process upon life coaching. External processes include practical aspects of how life coaches chose to practice; the external processes identified do not lend to a concise definition of practice, despite extensive identification of how the case’s conduct practice in relation to theory, structure, and coaching content. Perception of personal wellbeing, self-care and the relationship to practice is varied, with individual values and attributes impacting the perceived relationship between practitioner wellbeing and practice. Conclusion: The life coach is a facilitative helper. Progression of the industry requires the formation of an accepted identity for practice that appreciates individual difference. Identification of role and responsibilities contributes to the movement to standardisation within an unregulated industry.<br/

Eye quietness and quiet eye in expert and novice golf performance: an electrooculographic analysis

Quiet eye (QE) is the final ocular fixation on the target of an action (e.g., the ball in golf putting). Camerabased eye-tracking studies have consistently found longer QE durations in experts than novices; however, mechanisms underlying QE are not known. To offer a new perspective we examined the feasibility of measuring the QE using electrooculography (EOG) and developed an index to assess ocular activity across time: eye quietness (EQ). Ten expert and ten novice golfers putted 60 balls to a 2.4 m distant hole. Horizontal EOG (2ms resolution) was recorded from two electrodes placed on the outer sides of the eyes. QE duration was measured using a EOG voltage threshold and comprised the sum of the pre-movement and post-movement initiation components. EQ was computed as the standard deviation of the EOG in 0.5 s bins from –4 to +2 s, relative to backswing initiation: lower values indicate less movement of the eyes, hence greater quietness. Finally, we measured club-ball address and swing durations. T-tests showed that total QE did not differ between groups (p = .31); however, experts had marginally shorter pre-movement QE (p = .08) and longer post-movement QE (p < .001) than novices. A group × time ANOVA revealed that experts had less EQ before backswing initiation and greater EQ after backswing initiation (p = .002). QE durations were inversely correlated with EQ from –1.5 to 1 s (rs = –.48 - –.90, ps = .03 - .001). Experts had longer swing durations than novices (p = .01) and, importantly, swing durations correlated positively with post-movement QE (r = .52, p = .02) and negatively with EQ from 0.5 to 1s (r = –.63, p = .003). This study demonstrates the feasibility of measuring ocular activity using EOG and validates EQ as an index of ocular activity. Its findings challenge the dominant perspective on QE and provide new evidence that expert-novice differences in ocular activity may reflect differences in the kinematics of how experts and novices execute skills

Repeatable and reusable research - Exploring the needs of users for a Data Portal for Disease Phenotyping

Background: Big data research in the field of health sciences is hindered by a lack of agreement on how to identify and define different conditions and their medications. This means that researchers and health professionals often have different phenotype definitions for the same condition. This lack of agreement makes it hard to compare different study findings and hinders the ability to conduct repeatable and reusable research. Objective: This thesis aims to examine the requirements of various users, such as researchers, clinicians, machine learning experts, and managers, for both new and existing data portals for phenotypes (concept libraries). Methods: Exploratory sequential mixed methods were used in this thesis to look at which concept libraries are available, how they are used, what their characteristics are, where there are gaps, and what needs to be done in the future from the point of view of the people who use them. This thesis consists of three phases: 1) two qualitative studies, including one-to-one interviews with researchers, clinicians, machine learning experts, and senior research managers in health data science, as well as focus group discussions with researchers working with the Secured Anonymized Information Linkage databank, 2) the creation of an email survey (i.e., the Concept Library Usability Scale), and 3) a quantitative study with researchers, health professionals, and clinicians. Results: Most of the participants thought that the prototype concept library would be a very helpful resource for conducting repeatable research, but they specified that many requirements are needed before its development. Although all the participants stated that they were aware of some existing concept libraries, most of them expressed negative perceptions about them. The participants mentioned several facilitators that would encourage them to: 1) share their work, such as receiving citations from other researchers; and 2) reuse the work of others, such as saving a lot of time and effort, which they frequently spend on creating new code lists from scratch. They also pointed out several barriers that could inhibit them from: 1) sharing their work, such as concerns about intellectual property (e.g., if they shared their methods before publication, other researchers would use them as their own); and 2) reusing others' work, such as a lack of confidence in the quality and validity of their code lists. Participants suggested some developments that they would like to see happen in order to make research that is done with routine data more reproducible, such as the availability of a drive for more transparency in research methods documentation, such as publishing complete phenotype definitions and clear code lists. Conclusions: The findings of this thesis indicated that most participants valued a concept library for phenotypes. However, only half of the participants felt that they would contribute by providing definitions for the concept library, and they reported many barriers regarding sharing their work on a publicly accessible platform such as the CALIBER research platform. Analysis of interviews, focus group discussions, and qualitative studies revealed that different users have different requirements, facilitators, barriers, and concerns about concept libraries. This work was to investigate if we should develop concept libraries in Kuwait to facilitate the development of improved data sharing. However, at the end of this thesis the recommendation is this would be unlikely to be cost effective or highly valued by users and investment in open access research publications may be of more value to the Kuwait research/academic community