A qualitative study of design stakeholders' views of developing and implementing a registry-based learning health system.

BACKGROUND:New opportunities to record, collate, and analyze routine patient data have prompted optimism about the potential of learning health systems. However, real-life examples of such systems remain rare and few have been exposed to study. We aimed to examine the views of design stakeholders on designing and implementing a US-based registry-enabled care and learning system for cystic fibrosis (RCLS-CF). METHODS:We conducted a two-phase qualitative study with stakeholders involved in designing, implementing, and using the RCLS-CF. First, we conducted semi-structured interviews with 19 program personnels involved in design and delivery of the program. We then undertook 11 follow-up interviews. Analysis of interviews was based on the constant comparative method, supported by NVivo software. RESULTS:The organizing principle for the RCLS-CF was a shift to more partnership-based relationships between patients and clinicians, founded in values of co-production, and facilitated by technology-enabled data sharing. Participants proposed that, for the system to be successful, the data it collects must be both clinically useful and meaningful to patients and clinicians. They suggested that the prerequisites included a technological infrastructure capable of supporting data entry and joint decision-making in an accessible way, and a set of social conditions, including willingness from patients and clinicians alike to work together in new ways that build on the expertise of both parties. Follow-up interviews highlighted some of the obstacles, including technical challenges and practical constraints on refiguring relationships between clinicians and patients. CONCLUSIONS:The values and vision underlying the RCLS-CF were shared and clearly and consistently articulated by design stakeholders. The challenges to realization were often not at the level of principle, but were both practical and social in character. Lessons from this study may be useful to other systems looking to harness the power of "big data" registries, including patient-reported data, for care, research, and quality improvement

Unending and uncertain: thinking through a phenomenological consideration of self-harm towards a feminist understanding of embodied agency.

Agency has been much discussed in both popular and academic feminist discourse, particularly in the context of empowerment and sexual practices. Following a third-wave emphasis on women’s ability to respect women’s choices and ability to exercise agency free from domination, postmodern feminist scholars have critiqued such a view as thoroughly implicated in discourses of neoliberal individualism and compulsory self-discipline. However, these critiques have not entirely succeeded in providing convincing alternative approaches for incorporating concepts and experiences of change and intentionality within frameworks which emphasise the governmentality of discourses of empowerment. Thus, this essay explores the benefits of shifting the frame of the discussion of agency from sexuality to self-harm, a practice and experience which is under-theorised within feminist thinking. Existing theorisations of self-harm, in which ideas of choice and self-determination are both centred and refused, highlight the particular importance of incorporating considerations of embodiment into discussions of agency. Therefore, the discussion uses a phenomenological perspective, as articulated by Sara Ahmed, to conceive of self-harm as an embodied, relational, and repeated act. Exploring each of these facets of self-harm highlights the need to explore theorisations of agency as messy and uncertain, reflecting the multiple pulls which can be exerted upon the body and to which the body can respond; as exercised by emplaced bodies which exist within contexts of necessity, wherein actions might be neither freely chosen nor entirely unwanted; and as continuous rather than discrete, never fully completed but rather a constant process of negotiation which exists in relation to complex personal and social histories. This return to the body, and the multiple and messy experiences of embodiment, highlights the benefits of both grounding feminist theorisations of agency within phenomenological considerations and of avoiding binary frameworks in which the possession or absence of agency are placed in discrete opposition. Centring uncertain and indeterminate embodied experiences might allow for a more productive platform for future feminist thinking

A qualitative study of design stakeholders' views of developing and implementing a registry-based learning health system.

BACKGROUND:New opportunities to record, collate, and analyze routine patient data have prompted optimism about the potential of learning health systems. However, real-life examples of such systems remain rare and few have been exposed to study. We aimed to examine the views of design stakeholders on designing and implementing a US-based registry-enabled care and learning system for cystic fibrosis (RCLS-CF). METHODS:We conducted a two-phase qualitative study with stakeholders involved in designing, implementing, and using the RCLS-CF. First, we conducted semi-structured interviews with 19 program personnels involved in design and delivery of the program. We then undertook 11 follow-up interviews. Analysis of interviews was based on the constant comparative method, supported by NVivo software. RESULTS:The organizing principle for the RCLS-CF was a shift to more partnership-based relationships between patients and clinicians, founded in values of co-production, and facilitated by technology-enabled data sharing. Participants proposed that, for the system to be successful, the data it collects must be both clinically useful and meaningful to patients and clinicians. They suggested that the prerequisites included a technological infrastructure capable of supporting data entry and joint decision-making in an accessible way, and a set of social conditions, including willingness from patients and clinicians alike to work together in new ways that build on the expertise of both parties. Follow-up interviews highlighted some of the obstacles, including technical challenges and practical constraints on refiguring relationships between clinicians and patients. CONCLUSIONS:The values and vision underlying the RCLS-CF were shared and clearly and consistently articulated by design stakeholders. The challenges to realization were often not at the level of principle, but were both practical and social in character. Lessons from this study may be useful to other systems looking to harness the power of "big data" registries, including patient-reported data, for care, research, and quality improvement

A qualitative study of design stakeholders’ views of developing and implementing a registry-based learning health system

Abstract: Background: New opportunities to record, collate, and analyze routine patient data have prompted optimism about the potential of learning health systems. However, real-life examples of such systems remain rare and few have been exposed to study. We aimed to examine the views of design stakeholders on designing and implementing a US-based registry-enabled care and learning system for cystic fibrosis (RCLS-CF). Methods: We conducted a two-phase qualitative study with stakeholders involved in designing, implementing, and using the RCLS-CF. First, we conducted semi-structured interviews with 19 program personnels involved in design and delivery of the program. We then undertook 11 follow-up interviews. Analysis of interviews was based on the constant comparative method, supported by NVivo software. Results: The organizing principle for the RCLS-CF was a shift to more partnership-based relationships between patients and clinicians, founded in values of co-production, and facilitated by technology-enabled data sharing. Participants proposed that, for the system to be successful, the data it collects must be both clinically useful and meaningful to patients and clinicians. They suggested that the prerequisites included a technological infrastructure capable of supporting data entry and joint decision-making in an accessible way, and a set of social conditions, including willingness from patients and clinicians alike to work together in new ways that build on the expertise of both parties. Follow-up interviews highlighted some of the obstacles, including technical challenges and practical constraints on refiguring relationships between clinicians and patients. Conclusions: The values and vision underlying the RCLS-CF were shared and clearly and consistently articulated by design stakeholders. The challenges to realization were often not at the level of principle, but were both practical and social in character. Lessons from this study may be useful to other systems looking to harness the power of “big data” registries, including patient-reported data, for care, research, and quality improvement

A qualitative study of design stakeholders’ views of developing and implementing a registry-based learning health system

Abstract: Background: New opportunities to record, collate, and analyze routine patient data have prompted optimism about the potential of learning health systems. However, real-life examples of such systems remain rare and few have been exposed to study. We aimed to examine the views of design stakeholders on designing and implementing a US-based registry-enabled care and learning system for cystic fibrosis (RCLS-CF). Methods: We conducted a two-phase qualitative study with stakeholders involved in designing, implementing, and using the RCLS-CF. First, we conducted semi-structured interviews with 19 program personnels involved in design and delivery of the program. We then undertook 11 follow-up interviews. Analysis of interviews was based on the constant comparative method, supported by NVivo software. Results: The organizing principle for the RCLS-CF was a shift to more partnership-based relationships between patients and clinicians, founded in values of co-production, and facilitated by technology-enabled data sharing. Participants proposed that, for the system to be successful, the data it collects must be both clinically useful and meaningful to patients and clinicians. They suggested that the prerequisites included a technological infrastructure capable of supporting data entry and joint decision-making in an accessible way, and a set of social conditions, including willingness from patients and clinicians alike to work together in new ways that build on the expertise of both parties. Follow-up interviews highlighted some of the obstacles, including technical challenges and practical constraints on refiguring relationships between clinicians and patients. Conclusions: The values and vision underlying the RCLS-CF were shared and clearly and consistently articulated by design stakeholders. The challenges to realization were often not at the level of principle, but were both practical and social in character. Lessons from this study may be useful to other systems looking to harness the power of “big data” registries, including patient-reported data, for care, research, and quality improvement

The Lancet Commission on self-harm

By delivering transformative shifts in societal attitudes and initiating a radical redesign of mental health care, we can fundamentally improve the lives of people who self-harm. This Lancet Commission is the product of a substantial team effort that has taken place over the last five years. It consolidates evidence and knowledge derived from empirical research and the lived experience of self-harm. Self-harm refers to intentional self-poisoning or injury, irrespective of apparent purpose, and can take many forms, including overdoses of medication, ingestion of harmful substances, cutting, burning, or punching. The focus of this Commission is on non-fatal self-harm—however, in some settings, distinctions are not this clear cut. Self-harm is a behaviour, not a psychiatric diagnosis, with a wide variety of underlying causes and contributing factors. It is shaped by culture and society, yet its definitions have arisen from research conducted mainly in high-income countries. The field has often overlooked the perspectives of people living in low-income and middle-income countries (LMICs) and Indigenous peoples. Furthermore, unlike suicide prevention, self-harm has been neglected by governments internationally. For these reasons, we set out to integrate missing perspectives about self-harm from across the world alongside existing mainstream scientific knowledge, with the aim of raising the profile of self-harm in the global policy arena and improving the treatment of people who self-harm internationally. There are at least 14 million episodes of self-harm annually across the world, representing a global rate of 60 per 100 000 people per year. This estimate is likely to be a considerable underestimate, because most people who self-harm do not present to clinical services and there are few routine surveillance systems, particularly in LMICs. Although self-harm can occur at any age, the incidence is much higher among young people and within this population, rates appear to be increasing. Repetition of self-harm is common, and suicide is much more common after self-harm than in the general population; 1·6% of people die by suicide within a year after presentation to hospital with an episode of self-harm. In LMICs, rates of repetition appear to be lower because pesticide self-poisoning (the most common method of self-harm in LMICs) has a high case fatality rate. For people who self-harm, the behaviour serves a variety of functions, including self-soothing, emotional management, communication, validation of identity, and self-expression. Self-harm practices are also shaped by social relationships and class dynamics. Indigenous peoples across the world, especially Indigenous youth, have high rates of self-harm, with colonisation and racism playing potentially important roles in driving the behaviour. Numerous psychological and social factors are associated with self-harm and the social determinants of health—poverty, in particular, heavily influences the distribution of self-harm within all communities. Yet we know little about how individual-level factors interact with social context to drive self-harm, or whether an individual might be more likely to engage in self-harm at a particular point in time. Furthermore, many of the biopsychosocial mechanisms underlying self-harm remain elusive. Granular data capture through Ecological Momentary Assessment, together with machine learning and triangulation of data sources, including qualitative data, could help to shed light on the nature and timing of self-harm. Psychological treatments can help some people who self-harm, but service users and practitioners often differ in their opinions of what constitutes effective treatment. Furthermore, treatment provision for self-harm remains highly variable and is often inaccessible, particularly within LMICs and to Indigenous peoples. Unfortunately, in many settings, there is a lack of a caring, empathic response towards people who self-harm, and those living in countries where self-harm with suicidal intent is deemed a criminal offence can find themselves liable to prosecution. Even in some liberal democracies, the police are sometimes used as a first line of response to people who self-harm, compounding feelings of stigma. We have identified 12 key recommendations that, if actioned, could transform the lives of people who self-harm (panel 1). Panel 1 Key recommendations of the Lancet Commission on self-harm Recommendations for governments •In all countries, a whole-of-government approach should address the upstream conditions that promote self-harm. This approach should build on existing national strategies aimed narrowly at mental health and suicide to acknowledge that many other societal efforts are needed to reduce self-harm. Tackling poverty, means restriction, and the societal drivers of misery can reduce suicide rates—this evidence can usefully inform government policy in relation to self-harm. •The punishment of people who self-harm around the world must stop; this effort must also include the decriminalisation of self-harm. •There is an urgent need to prioritise the prevention and management of self-harm in LMICs. The banning of pesticides will lead to a reduction of pesticide-related fatal self-harm. Interventions for self-harm need to be tailored to local and cultural contexts. •For Indigenous peoples, effective self-harm prevention strategies should prioritise self-determination and building healthy societies, thus empowering thriving cultures. Indigenous peoples should control their health services and design culturally appropriate prevention and intervention strategies. Interventions should include access to cultural healers, Elders, and Indigenous cultural activities. Recommendations for the delivery of services •People with lived experience of self-harm should be robustly supported to lead and participate in the design, delivery, leadership, and evaluation of care. Considering the rising rates of self-harm among young people, they should be particularly involved in the codesign of interventions. •Better integration of services and adequate staffing capacity is needed to ensure that individuals who repeatedly self-harm receive the help they need. •Health and social-care professionals should be trained in the compassionate assessment and management of self-harm. Ongoing supervision, staff support, and the direct involvement of people with lived experience (particularly from previously marginalised groups) should be key principles underpinning service delivery. Recommendations for the media and wider society •Discussion about self-harm should focus on relatable stories of survival, recovery, coping, and help seeking, with an emphasis on practical strategies. These stories should ideally be conveyed by people with lived experience. Other narratives which could have positive effects should also be carefully considered, ensuring that discussions do not lead to harm. •The online media industry must take greater responsibility for the online safety of their users, particularly young people and other vulnerable users. Recommendations for researchers and research funders •International research funding should be directed towards LMICs, with priority given to areas where the burden is greatest. •Robust and anonymised self-harm surveillance systems should be set up in all countries, to monitor trends in self-harm across the world. •Mixed methods biopsychosocial research applying social ecological approaches to understanding self-harm should be prioritised. LMICs=low-income and middle income countries. We already know that tackling societal drivers such as poverty, social isolation, and access to means of suicide can reduce suicide rates—this evidence can also usefully inform government policy in relation to self-harm. From a societal perspective, the punishment of people who self-harm must stop internationally, and government approaches should address the conditions that make self-harm more likely. For Indigenous peoples, effective self-harm prevention strategies should prioritise self-determination and the building of healthy societies, thus empowering cultures to thrive. Indigenous peoples should have greater control over their health and social care services and design culturally appropriate prevention and intervention strategies. In LMICs, reducing access to means of self-harm could be particularly important, as could an emphasis on self-harm surveillance, and a redistribution of current research funding to places with the greatest need. In terms of how we communicate about self-harm, the online media industry must take greater responsibility for the safety of their users, particularly young people and other at-risk users. Discussions about self-harm should focus on relatable stories of survival, recovery, coping, and help seeking with an emphasis on practical strategies. These stories should ideally be designed and conveyed by people with lived experience of self-harm. From the perspective of service delivery, people with lived experience of self-harm should be robustly supported to lead, design, and deliver models of care. The recommendations that have emerged from this Commission are ambitious, but we believe that they can be achieved with targeted advocacy and the strategic deployment of resources. Success will require ongoing efforts by diverse groups across different settings collectively committed to meaningful engagement and action in the long-term. Furthermore, existing fragmented, piecemeal strategies should be replaced with well-coordinated, whole-of-society, and whole-of-government efforts. These efforts must occur in tandem with better integrated health and social care services. By acting now, we believe that it will be possible to achieve a substantial and meaningful impact on the lives of millions of people who self-harm