Dynamics and Dependencies in Regional Collaboration for Biodiversity Restoration: Reflections from the Netherlands.

Biodiversity restoration on a landscape level requires people with different backgrounds to connect and collaborate over an extended period of time. Hence, understanding how conservation and restoration goals are negotiated and achieved necessitates an understanding of the dynamics of the social fabric: the social networks and interactions that develop, underpin, and sustain collective action. This paper identifies patterns and factors that have contributed to constructive collaboration for biodiversity in the rural area of Ooijpolder-Groesbeek, which has been at the vanguard of nature and landscape development in the Netherlands. We conducted a historical analysis of the period between 1985 and 2022, based on a broad range of literature and interviews with key actors in the region. We provide a narrative account of the tipping points and the preceding processes that propelled the region to its current state. The emergence of these tipping points is analyzed through the lens of a conceptual framework on the dynamic interplay between practices, social interactions, events, and circumstances. Our findings reveal how an integrative landscape approach, the use of suitable boundary objects, and continuous network building and relation management across various levels have contributed to the success of the collective effort.

Negotiating with digital self-monitoring: A qualitative study on how patients with multiple sclerosis use and experience digital self-monitoring within a scientific study.

Research shows that patients can have values and use practices that are different from those envisioned by technology developers. Using sociomaterialism as an analytical lens, we show how patients negotiated with digital self-monitoring in the context of a scientific study. Our paper draws on interviews with 26 patients with the chronic neurological disease multiple sclerosis (MS) who were invited to use an activity tracker and a self-monitoring app for a period of 12 months as part of their everyday life. Our study aims to fill a gap: relatively little is known about how digital self-monitoring becomes materialized in the everyday lives of patients with chronic diseases. We show that patients engaged in digital self-monitoring because they are eager to participate in research to contribute knowledge that will benefit the larger community of patients rather than to improve their personal self-management. Although respondents adhered to digital self-monitoring during the study, it is not self-evident that they would do so for private self-monitoring purposes. It became clear that respondents did not necessarily perceive digital self-monitoring as useful for their self-management practices due to their established knowledge and routines. Moreover, respondents referred to the inconvenience of having to perform self-monitoring tasks and the emotional burden of being reminded of the MS because of the digital self-monitoring. We conclude by indicating what could be considered when designing scientific studies, including the suitability of conventional study designs for evaluating technologies used daily by patients and the challenge of integrating patients' experiential knowledge into scientific practices.

Digital Self-monitoring of Multiple Sclerosis: Interview Study With Dutch Health Care Providers on the Expected New Configuration of Roles and Responsibilities.

BACKGROUND: Digital self-monitoring allows patients to produce and share personal health data collected at home. This creates a novel situation in which health care providers and patients must engage in a reconfiguration of roles and responsibilities. Although existing research pays considerable attention to the perceptions of patients regarding digital self-monitoring, less attention has been paid to the needs, wishes, and concerns of health care providers. As several companies and public institutions are developing and testing digital self-monitoring at the time of writing, it is timely and relevant to explore how health care providers envision using these technologies in their daily work practices. Our findings can be considered in decision-making processes concerning the further development and implementation of digital self-monitoring. OBJECTIVE: This study aims to explore how health care providers envisage using smartphone apps for digital self-monitoring of multiple sclerosis (MS) in their daily work practices, with a particular focus on physician-patient communication and on how health care providers respond to self-monitoring data and delegate tasks and responsibilities to patients. METHODS: We conducted semistructured in-depth interviews with 14 MS health care providers: 4 neurologists, 7 MS specialist nurses, and 3 rehabilitation professionals. They are affiliated with 3 different hospitals in the Netherlands that will participate in a pilot study to assess the efficiency and effectiveness of a specific smartphone app for self-monitoring. RESULTS: The interviewed health care providers seemed willing to use these smartphone apps and valued the quantitative data they produce that can complement the narratives that patients provide during medical appointments. The health care providers primarily want to use digital self-monitoring via prescription, meaning that they want a standardized smartphone app and want to act as its gatekeepers. Furthermore, they envisioned delegating particular tasks and responsibilities to patients via digital self-monitoring, such as sharing data with the health care providers or acting on the data, if necessary. The health care providers expected patients to become more proactive in the management of their disease. However, they also acknowledged that not all patients are willing or able to use digital self-monitoring apps and were concerned about the potential psychological and emotional burden on patients caused by this technology. CONCLUSIONS: Our findings show that health care providers envisage a particular type of patient empowerment and personalized health care in which tensions arise between health care providers acting as gatekeepers and patient autonomy, between patient empowerment and patient disempowerment, and between the weight given to quantitative objective data and that given to patients' subjective experiences. In future research, it would be very interesting to investigate the actual experiences of health care providers with regard to digital self-monitoring to ascertain how the tensions mentioned in this paper play out in practice.

In their own words: A narrative analysis of illness memoirs written by men with prostate cancer.

By drawing on a narrative analysis of 11 autobiographical illness memoirs, this article investigates the complexities of what it means to live with prostate cancer over a period of time. Acknowledging how cancer disrupts everyday life, we focus on the day-to-day experiences and struggles that take place inside and outside the hospital. By building on illustrative quotes from the memoirs, we discuss different facets of cancer as a lived experience. Our findings show that men reconstruct their identity in the memoirs in response to the disruptive nature of cancer by including various identities from previous times. They describe a relationship with their cancer that is fluid and fitful and often depends on place, time and circumstances. We also found that the 'not knowing' of prostate cancer creates uncertainty, which can take different forms, transcends time and is shaped through medical technologies, continual testing and disagreeing doctors. Prostate cancer is often seen as easily treatable, but our findings call for a different way of looking at its impact. We argue that memoirs, written by men themselves, make it palpable what it means to live with cancer. As such, illness memoirs offer a way to advance our sociological understanding of cancer-as-a-lived experience.

The use of molecular biomarker tests: an interview study with healthcare providers about a molecular biomarker test for prostate cancer.

Aim: Investigate why healthcare providers are not always willing to use molecular biomarker tests, even though they promise to personalize disease diagnosis and treatment. Materials & methods: We interviewed 20 Dutch urological healthcare providers to ascertain why they used or did not use SelectMDx, a biomarker test for prostate cancer. Results: Whether and how it was used differed from the developers' expectations, because users and nonusers disagreed about its perceived advantages; the scientific and clinical evidence; the advantages of MRI; and the value of PCA3 testing. Financial issues and the absence of SelectMDx in professional guidelines and hospital care pathways also hampered its use. Conclusion: Eliciting users' and nonusers' views is important to better understand how biomarker tests can be embedded in clinical practice.

Lay abstract Molecular biomarkers are molecules, found in urine or blood, for instance, that help healthcare providers to diagnose a disease and provide a prognosis. This assists their clinical decision-making. However, not all healthcare providers use molecular biomarkers, and we wanted to find out why. We focused on a test for prostate cancer called the SelectMDx test. We interviewed 20 Dutch healthcare providers and found that whether they used the SelectMDx test and how they used it depended on things like their interpretation of the scientific evidence; how they valued other technologies; the financial disadvantages; and the test's absence in professional guidelines. By eliciting users' and nonusers views, we have gained a better understanding of how biomarker tests can be embedded in clinical practice.

Toward Digital Self-monitoring of Multiple Sclerosis: Investigating First Experiences, Needs, and Wishes of People with MS.

BACKGROUND: Digital self-monitoring, such as through smartphone applications (apps) or activity trackers, could be applied to monitor the health of people with multiple sclerosis (MS). This self-monitoring could facilitate personalized therapies and self-management of MS. The acceptance of digital self-monitoring tools by patients depends on them being able and willing to use these tools in their daily lives. METHODS: In-depth interviews were conducted with seven adults with MS before and after participation in a study in which they used an activity tracker and an MS-specific smartphone app for 4 weeks. We inquired about experiences with the tools in daily life and needs and wishes regarding further development and implementation of digital self-monitoring for people with MS. RESULTS: The smartphone app and the activity tracker increased respondents' awareness of their physical status and stimulated them to act on the data. Challenges, such as confrontation with their MS and difficulties with data interpretation, were discussed. The respondents desired 1) adaptation of digital self-monitoring tools to a patient's personal situation, 2) guidance to increase the value of the data, and 3) integration of digital self-monitoring into treatment plans. CONCLUSIONS: These findings show that patients can provide detailed descriptions of their daily life experiences with new technologies. Mapping these experiences could help in better aligning the development and implementation of digital self-monitoring tools, in this case smartphones and activity trackers, with the needs and wishes of people with MS.

Reflection as a Deliberative and Distributed Practice: Assessing Neuro-Enhancement Technologies via Mutual Learning Exercises (MLEs).

In 1968, Jürgen Habermas claimed that, in an advanced technological society, the emancipatory force of knowledge can only be regained by actively recovering the 'forgotten experience of reflection'. In this article, we argue that, in the contemporary situation, critical reflection requires a deliberative ambiance, a process of mutual learning, a consciously organised process of deliberative and distributed reflection. And this especially applies, we argue, to critical reflection concerning a specific subset of technologies which are actually oriented towards optimising human cognition (neuro-enhancement). In order to create a deliberative ambiance, fostering critical upstream reflection on emerging technologies, we developed (in the context of a European 7th Framework Programme project on neuro-enhancement and responsible research and innovation, called NERRI) the concept of a mutual learning exercise (MLE). Building on a number of case studies, we analyse what an MLE involves, both practically and conceptually, focussing on key aspects such as ambiance and expertise, the role of 'genres of the imagination' and the profiles of various 'subcultures of debate'. Ideally, an MLE becomes a contemporary version of the Socratic agora, providing a stage where multiple and sometimes unexpected voices and perspectives mutually challenge each other, in order to strength-en the societal robustness and responsiveness of emerg-ing technologies.

A clinical utility study of exome sequencing versus conventional genetic testing in pediatric neurology.

PURPOSE: Implementation of novel genetic diagnostic tests is generally driven by technological advances because they promise shorter turnaround times and/or higher diagnostic yields. Other aspects, including impact on clinical management or cost-effectiveness, are often not assessed in detail prior to implementation. METHODS: We studied the clinical utility of whole-exome sequencing (WES) in complex pediatric neurology in terms of diagnostic yield and costs. We analyzed 150 patients (and their parents) presenting with complex neurological disorders of suspected genetic origin. In a parallel study, all patients received both the standard diagnostic workup (e.g., cerebral imaging, muscle biopsies or lumbar punctures, and sequential gene-by-gene-based testing) and WES simultaneously. RESULTS: Our unique study design allowed direct comparison of diagnostic yield of both trajectories and provided insight into the economic implications of implementing WES in this diagnostic trajectory. We showed that WES identified significantly more conclusive diagnoses (29.3%) than the standard care pathway (7.3%) without incurring higher costs. Exploratory analysis of WES as a first-tier diagnostic test indicates that WES may even be cost-saving, depending on the extent of other tests being omitted. CONCLUSION: Our data support such a use of WES in pediatric neurology for disorders of presumed genetic origin.Genet Med advance online publication 23 March 2017.

Understanding the Psychosocial Effects of WES Test Results on Parents of Children with Rare Diseases.

The use of whole exome sequencing (WES) for diagnostics of children with rare genetic diseases raises questions about best practices in genetic counselling. While a lot of attention is now given to pre-test counselling procedures for WES, little is known about how parents experience the (positive, negative, or inconclusive) WES results in daily life. To fill this knowledge gap, data were gathered through in-depth interviews with parents of 15 children who underwent WES analysis. WES test results, like results from other genetic tests, evoked relief as well as worries, irrespective of the type of result. Advantages of obtaining a conclusive diagnosis included becoming more accepting towards the situation, being enabled to attune care to the needs of the child, and better coping with feelings of guilt. Disadvantages experienced included a loss of hope for recovery, and a loss by parents of their social network of peers and the effort necessary to re-establish that social network. While parents with conclusive diagnoses were able to re-establish a peer community with the help of social media, parents receiving a possible diagnosis experienced hurdles in seeking peer support, as peers still needed to be identified. These types of psychosocial effects of WES test results for parents are important to take into account for the development of successful genetic counselling strategies.

Creating Inquiry Between Technology Developers and Civil Society Actors: Learning from Experiences Around Nanotechnology.

Engaging civil society actors as knowledgeable dialogue partners in the development and governance of emerging technologies is a new challenge. The starting point of this paper is the observation that the design and orchestration of current organized interaction events shows limitations, particularly in the articulation of issues and in learning how to address the indeterminacies that go with emerging technologies. This paper uses Dewey's notion of 'publics' and 'reflective inquiry' to outline ways of doing better and to develop requirements for a more productive involvement of civil society actors. By studying four novel spaces for interaction in the domain of nanotechnology, this paper examines whether and how elements of Dewey's thought are visible and under what conditions. One of the main findings is that, in our society, special efforts are needed in order for technology developers and civil society actors to engage in a joint inquiry on emerging nanotechnology. Third persons, like social scientists and philosophers, play a role in this respect in addition to external input such as empirically informed scenarios and somewhat protected spaces.