Blockchain Papers

Carolina Traub, Rialda Kovacevic

Purpose This article explores the main elements of co-participation in health, examining how community engagement can improve health outcomes and health services’ overall efficiency. It aims to discuss and identify key features that facilitate co-participation strategies in service delivery and health program implementation. Design/methodology/approach The authors conducted a general literature review to comprehensively explore the role of co-participation in health, drawing on scientific literature and real-world examples to identify key factors that contribute to successful health interventions. A total of 50 published resources were included, and a descriptive analysis was performed, focusing on summarizing existing literature and highlighting key themes and practical strategies. Documents were selected from publications dated between 2004 and 2024. Findings Community participation is presented as a critical factor in improving population health outcomes. The examined initiatives promote the idea that community integration into the design and implementation of health programs increases treatment adherence, users' health perception and improved health outcomes. Several strategies and approaches are presented as key tools to adequately integrate community engagement such as community empowerment, government decentralization and incorporation of technology, among others. Practical implications Coparticipation in health improves health outcomes and promotes greater equity and social justice. Involving citizens in health decision-making contributes to improving the quality of life and well-being of the community. Empowering patients’ decision-making not only builds one’s self-agency in health decision-making but also simultaneously facilitates closing the gaps in healthcare service delivery due to large shortages in the health workforce around the world. This has further implications for overall health systems’ financing, efficiency and sustainability. Social implications This research has social implications as it underscores how community participation is essential for fostering equity, justice and inclusivity within health systems. Originality/value This article offers an innovative perspective on the role of partnership in achieving good health outcomes, highlighting the importance of adapting interventions to local contexts, the need for sustainable financing and the inclusion of a wide range of actions toward participation.

Wendy Charles, Mark B. van der Waal, J. Flach, Arno Bisschop · 7 authors

BACKGROUND: Blockchain has been proposed as a critical technology to facilitate more patient-centric research and health information sharing. For instance, it can be applied to coordinate and document dynamic informed consent, a procedure that allows individuals to continuously review and renew their consent to the collection, use, or sharing of their private health information. Such has been suggested to facilitate ethical, compliant longitudinal research, and patient engagement. However, blockchain-based dynamic consent is a relatively new concept, and it is not yet clear how well the suggested implementations will work in practice. Efforts to critically evaluate implementations in health research contexts are limited. OBJECTIVE: The objective of this protocol is to guide the identification and critical appraisal of implementations of blockchain-based dynamic consent in health research contexts, thereby facilitating the development of best practices for future research, innovation, and implementation. METHODS: The protocol describes methods for an integrative review to allow evaluation of a broad range of quantitative and qualitative research designs. The PRISMA-P (Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols) framework guided the review's structure and nature of reporting findings. We developed search strategies and syntax with the help of an academic librarian. Multiple databases were selected to identify pertinent academic literature (CINAHL, Embase, Ovid MEDLINE, PubMed, Scopus, and Web of Science) and gray literature (Electronic Theses Online Service, ProQuest Dissertations and Theses, Open Access Theses and Dissertations, and Google Scholar) for a comprehensive picture of the field's progress. Eligibility criteria were defined based on PROSPERO (International Prospective Register of Systematic Reviews) requirements and a criteria framework for technology readiness. A total of 2 reviewers will independently review and extract data, while a third reviewer will adjudicate discrepancies. Quality appraisal of articles and discussed implementations will proceed based on the validated Mixed Method Appraisal Tool, and themes will be identified through thematic data synthesis. RESULTS: Literature searches were conducted, and after duplicates were removed, 492 articles were eligible for screening. Title and abstract screening allowed the removal of 312 articles, leaving 180 eligible articles for full-text review against inclusion criteria and confirming a sufficient body of literature for project feasibility. Results will synthesize the quality of evidence on blockchain-based dynamic consent for patient-centric research and health information sharing, covering effectiveness, efficiency, satisfaction, regulatory compliance, and methods of managing identity. CONCLUSIONS: The review will provide a comprehensive picture of the progress of emerging blockchain-based dynamic consent technologies and the rigor with which implementations are approached. Resulting insights are expected to inform best practices for future research, innovation, and implementation to benefit patient-centric research and health information sharing. TRIAL REGISTRATION: PROSPERO CRD42023396983; http://tinyurl.com/cn8a5x7t. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/50339.

Courtney Buckler

I play the game a lot. I regularly translate my mental health work into language and structures that are recognisable and friendly to the ‘powers that be’. I do it to get access, leverage, legitimacy, and funding. Often it works, but I am beginning to wonder about the costs of this translation work. I regularly find the words, action and work of the user-led movement somehow co-opted, adopted, misinterpreted and otherwise used for purposes that seem to bolster rather than challenge the status quo. I think, for example, of tokenistic co-production initiatives or sanitised and professionalised peer-support roles that have popped up over recent years. These and other similar programs seem to emanate from the demands of the user-led movement, but implement them in a way that maintains power and resources in the places they have always been. They do nothing to challenge the structures that cause mental distress in the first place. It feels similar to pink-washing or green-washing, albeit in the mental health space. I talk about it with others in the movement. I’m not sure what to call it, but I don’t want to be part of it. Sometimes, in my playing the game, I worry I might be. The aim here is to think this through, experimenting with a piece of language from my academic work. The concept I draw on is called intentional institutional capture (Eastwood, 2006). The idea comes from a feminist research methodology called institutional ethnography (IE) (Smith, 2005), which is concerned with bureaucracy and power in contemporary corporate capitalism. Briefly, institutional capture describes the subtle trickery of dominant systems and their bureaucratic processes, in which our experiences, work or just our existence are co-opted and ‘captured’ by ‘the system’ in service of its own interests. As implied by the name, intentional institutional capture is similar (Eastwood, 2006), albeit describing our deliberate participation in that ‘capture’ for our own ends—this is what I mean by ‘playing the game’. These concepts have helped me to think about the broader implications of my organising and to think about how I can ‘system proof’ my work. My reflections are rooted in my multiple positionings in relation to lived-experience work. I am a survivor researcher in the midst of their PhD, in which I use a mad and disability justice lens to explore mental health policy in the UK. I am also co-founder and executive director of Make Space (2022), a user-led collective exploring liberatory and decarceral approaches to self-harm. As the title ‘lived-experience’ implies, all my work is based on and informed by ongoing experiences of mental distress and crisis—both my own and those of others I care/have cared for. I believe in a system of mental health care rooted in autonomy, liberation and justice. I am concerned about ‘white, western cultural beliefs and frameworks’ that have ‘discouraged [us] from viewing our distress through a holistic and non-medicalised lens’ (Kaufman-Mthimkhulum, 2022). I believe in grassroots, community-led responses to distress and crisis that have the spaciousness to be creative, bold and brave outside of the demands, interests and constraints of the institution. Nevertheless, whether as a researcher, organiser or survivor, I find myself regularly interacting with ‘the system’ and organisations that do not necessarily hold the same views as me (and sometimes—oftentimes—do work that undermines them). I interact with mainstream mental health provision for two main reasons. First, because I often find there people with good intentions and a desire to do good work, who are stuck within bureaucratic processes that require them to do acts and invoke ideas I see to be harmful. Secondly, because it is behind and through ‘the mainstream’ that leverage, resources and funding are held—it is often because I am beholden to it that I must continue to participate. My participation includes work with funders, local authorities, NHS trusts, universities or even my GP. Doing so includes adopting ways of talking, acting and relating that are familiar enough to the status quo that I can access the legitimacy and intelligibility in order to get the access or resource that I need. Professionally, I often frame my user-led work to funders and institutional partners as something about safety or prevention—despite the fact that a core part of my work is challenging the utility of ‘prevention’ as a goal and dominant notions of ‘safety’ that often cause more harm than good (see: #StopSim (2022)). I also turn up to spaces I am invited to as an ‘expert-by-experience’, knowing full well that this is likely to be a tick-box exercise, still with enough (perhaps naive) enthusiasm to believe that my being there could (and sometimes does, in little ways) make changes. Tokenism, ableism, lack of power exchange and unpaid labour are well-known issues when it comes to co-production and ‘user-involvement’ in the mental health sector (e.g. Brown and Ormerod, 2020; Heney and Poleykett, 2021; Waddingham, 2021; Batty et al., 2022). Nonetheless, I turn up and often advocate for there to be more involvement opportunities—even though I know, from personal experience, that they can be harmful. I also ‘play the game’ in my own healing. I use my diagnoses to access resources, despite having a general ambivalence toward my own psychiatric diagnoses and broader concerns about how psychiatric labels are used systemically to justify harm and mistreatment of others. Not everyone gets the privilege of choosing to bring up their psychiatric diagnoses—some people, despite their best efforts, cannot shake them, often with violent and catastrophic consequences. I am lucky in this case, that among my diagnoses is not a personality disorder, which I have seen in so many instances lead to removal and refusal of care (Baker and Beazley, 2022). Moreover, not can everyone be sure that seeking help will result in any help, or that which is actually helpful, at all (Heney and Sommer, 2021). I wonder whether ‘playing the game’ is worth it. I often make small wins and meet short-term goals that I genuinely believe are helpful. I meet a lot of people working within ‘the system’ who do good work, have good intentions and are genuinely receptive to the central tenets of user-led/survivor movement. I also believe in the value of top-down as well as bottom-up change. But at the same time, it can feel as though in my playing the game, or participation in ‘the system’, I am tacitly endorsing structures, concepts and ways of working that I actively oppose. Then again, I’m not sure if it’s that straightforward. Doing this work as someone with ‘lived-experience’ work makes it feel even more complicated. Having my work bound up in my identity makes it difficult to speak, to strategize and to decide which parts of my experience to bring forward and which to leave behind (Gupta, 2022). It is also makes doing the work seem more urgent and like there is more at stake. It is what has made writing this piece far harder to write than I anticipated. When your work and activism are connected to the most vulnerable parts of yourself, ‘getting it wrong’ is more than just a bad day in the office. I began joining up my experiences of ‘playing the game’ through reflections I was having as part of my PhD, which focuses on the impact of evidence-based medicine (EBM) on mental health policymaking. Specifically, my work explores the long and controversial update process to the National Institute for Health and Care Excellence’s (NICE) Guideline on Depression in Adults—which began in 2015 and was published in its final form in June 2022. As a document that has coordinated so much of my own care, I felt/feel invested in knowing what people have to say about it. I observed how those who tried to change the depression guideline were bringing important challenges to how depression care is ordered. I also saw how these groups seemed to be being tactical in their doing so. Seeing that NICE was concerned with being ‘evidence-based’, the guidelines’ detractors framed their arguments in those terms (Rost and McPherson, 2021). They published multiple public-facing position statements, lobbied MPs and garnered support across the mental health professions—all coordinated and framed as a critique of how NICE had used, analysed or dealt with ‘evidence’. In some ways, the tactic worked. Through their concerted efforts NICE were forced to hold multiple unprecedented consultations on the guideline, creating opportunities for hundreds of organisations to comment on its content. The campaign got issues around depression into parliament and in the press. The final guideline recommended a wider range of treatments than ever before, emphasised patient choice, and acknowledged for the first-time issues that had long been a source of concern in the survivor movement such as withdrawal effects of anti-depressants and their link to suicidality (NICE, 2022). The group made important and necessary wins. At the same time, the campaign did little to challenge underlying ideological issues the mental health care—unfair distributions power, tokenistic co-production, marketisation and privatisation in health care, or limited understandings of what gets to count as ‘evidence’. On the latter point, fact, it could be argued that some of the key issues raised by the coalition exist not in spite of NICE’s use of EBM but because of it. EBM is widely critiqued both in general terms (Greenhalgh et al., 2014; Boswell, 2018; Hanemaayer, 2019) and specifically in its application to psychiatry (Gupta, 2014; Court et al., 2017). The issues raised by the guideline’s detractors included NICE’s overreliance on results from large scale trials over other methodologies, increased anti-depressant prescription, linear models of recovery and emphasis on cheap and manualised treatments such as cognitive behavioural therapy (CBT). Each of these issues have been attributed elsewhere to (at least in part) the application of evidence-based medicine to psychiatry (Dumit, 2012; Dalal, 2018; Hovda, 2019; McPherson et al., 2020). It’s a shame, because the whole process seemed to me not only a controversy around the specifics but also a struggle over broader ideas of what it means to live well, whose knowledge gets to count, and what good mental health care should or could be. These broader ideological concerns, necessary now more than ever, were in and among the coalition’s work—but hidden behind their emphasis on methods and evidence. The coalition’s tactic to frame their arguments in relatively non-controversial terms, to translate them into the institutionally friendly and recognisable language of ‘methodology’ and ‘evidence’ meant that the bigger, broader and perhaps more pressing conversations, did not happen. NICE were able to selectively attend to the issues of evidence and ignore the broader ideological and political challenges the group was bringing. EBM—the underlying structure that caused (or is at least contributory to) many of the problems outlined by the coalitionary group—remains intact and unchallenged. Perhaps, EBM is even reified by the process (McGoey, 2010). Power remains in the same place. Business as usual. In my academic work, I have been using the idea of (intentional) institutional capture (Eastwood, 2006) to think through the tactical use of ‘methods’ and ‘evidence’ as a narrative structure by those who opposed the NICE depression guideline. Increasingly, I’ve been wondering whether the concept could be helpful for my own organising. The term comes from a method called institutional ethnography (IE) (for a clear overview of IE see Murray (2022)). IE is a method that calls researchers to bring their politics to work, take sides (Cupit et al., 2021), to avoid making grand theories and instead look at people’s everyday lives and the struggles they face (Smith, 2008). In my organising I hear a lot of people talk about ‘the system’—of sanism, ableism, racism, classism and queerphobia as both systemic and structural. These -isms reside both in the thoughts and acts of ill-willed individuals but are also somehow beyond them—embedded in and joined up by the fabric of our society. The question, however, is where? Where is this system? Where do we touch it, see it, change it? Institutional ethnography suggests that ‘the system’ can be found in the invisible bureaucratic architecture of our everyday lives. It is a seemingly neutral, authorless, impenetrable, unconnected and boring deluge of paperwork, forms, manuals and guidelines that join up and coordinate the actions of numerous individuals and organisations across time and space (Smith, 2005; Murray, 2022). It is these texts that act as a kind of orchestral conductor of the social ‘system’, making sure that no matter where or who we are, we all sing from the same hymn sheet—whether we like it or not. Bureaucracy reduces the messiness and meaning of our everyday lives to a limited set of tick boxes, categories and processes. Too often, people’s personhood and protection is determined by their (in)ability to fill out forms, to meet a threshold or to qualify as this and not that—I think for example of migration status, benefit eligibility or employment rights. Often, the course of a person’s life hinge on whether they filled out a form correctly, got it into a post-box on time or remembered to check their junk folder (see: Deaths by Welfare, 2023). Psychiatry is no different. Diagnostic manuals, care plans, mental capacity, sick notes, GP letters, rating scales, codes of conduct, funding applications, impact reports, clinical trials, academic research. It’s all texts—a limited collection of thresholds, forms, categories and vocabularies that we either meet or do not meet, fall into or do not fall into, can speak or can’t. Our lives are forced into the rigid and unimaginative categories these bureaucratic structures offer us. In IE, this process is called ‘institutional capture’ (Smith, 2005, p. 119). It is what is happening when I have to squeeze my work into the boxes offered to me by a funding application, or when I have to explain my need for solitude and rest as a depression, contorted into the weirdness and inapplicability a PHQ-9. Suddenly, my life and work become translated into uncontroversial categories and cogs in a system I disagree with. But I am not always passively ‘captured’ by ‘the system’. Sometimes, I allow or work to make it to happen. We tick the right boxes, talk the talk or playing the game because we know what the system wants us to do. We do it to get resources or to get leverage. This is what I mean when I talk about ‘playing the game’. It is what I am doing when I strategically invoke my diagnoses or word my work as ‘prevention’, and it is what the detractors of the depression guideline are doing when they frame their critique of NICE’s work as one to do with evidence. This process is called intentional institutional capture (Eastwood, 2006)—when we deliberately and tactically allow ourselves to be subsumed into a system or a worldview for the purpose of playing it at its own game. But there are costs to playing the game and allowing ourselves to be captured. While we (hopefully) get short-term wins, playing the game implicitly endorses its underlying tenets—requiring us to forego the broader ideological struggle in favour of the immediate needs of any given situation. I wonder whether that’s why doing so leaves me with a funny taste in my mouth. Then again, if we refuse to play along, we lose those short-term wins—like changing a guideline, accessing mental health care or getting funding to do oppositional work. Sometimes, especially when I’m working in ‘high-risk’ situations, the short-term needs have to take precedence. This double-edge sword is the violence of bureaucracy. You lose if you play and you lose if you don’t. There has to be a way out. I don’t know how, but I wonder whether thinking about institutional capture could help. I am lucky enough to spend a lot of time around people who are doing exciting and liberatory mental health work—despite and in spite of ‘the system’. I see the permissiveness, creativity and boldness of user-led work and am consistently humbled by watching what happens when people have access to care that is truly consensual, collaborative and self-determined. As the edifice of mainstream mental health care begins to crumble (Rose et al., 2020; Moncrieff et al., 2022), it is my hope that user-led work is what takes its place. But I often wonder how we do that—how we make this kind of care ‘mainstream’ without it being co-opted, watered-down or otherwise manipulated by the system in service of maintaining the status quo. It will take deliberate organising and strategy to identify, name and get out from under the subtle trickery of a system designed for business as usual—including thinking carefully about what we win and what we lose when we decide to ‘play the game’. I wonder if the language of institutional capture—intentional or otherwise—might be helpful (Smith, 2005; Eastwood, 2006). It has helped me at least, to join up seemingly unrelated incidents and try to begin to explore how I can take wiser action in the world. The answer might not be ‘institutional capture’, but I do believe it is important to be intentional about our interactions with ‘the system’. It matters because the more time we spend translating our work into institutional language, the less time we spend developing the vocabulary required for a just future—one not about safeguarding, cost-efficiency or evidence-bases, but about justice, autonomy and liberation for all. Courtney Buckler (she/they) is a white, able-bodied, working-class, queer person. Courtney was born and raised in the south of England.

Egondu R. Onyejekwe

No abstract is available for this record.

Peter Pennefather, West Suhanic, Fatima Lakha, Deborah I. Fels

An inclusive systemic design is specified for publishing data derived from personal private health records, owned and curated by patients. The design is specified with an example of a digital scrapbook of private personal records of care for medically significant pain. This scrapbook is designed to aggregate private records of patient pain experiences and of the care and accommodations they access. The design also specifies how to store, access and analyze those private records through distributed ledgers and how qualitative and quantitative data derived from that private data can be published as a common pool resource with polycentric governance.

Joshua C. Rubin

He rests his hand on a tree of knowledge as he points to a city in the distance. Here is the city on a high hill for all to see. This is a symbol of the Learning Health System… [The] patient is the great unknown variable as we climb the hill. He has not yet been activated and could do so much good… I guess [it] is kinda frightening trying something new. It is sort of chaordic. But that is the energy that we need to crest this hill.—Patient Activist and Artist Regina Holliday, 1 2012 (“Health Care's Rosa Parks”2) Welcome to Issue 3 of Learning Health Systems, focused on “Patient Empowerment and the Learning Health System.” As Guest Editor for this theme issue, I find this topic near and dear to my heart, as it would be to the heart of anyone who ever has been or will be a patient or caregiver. We all stand poised to benefit from a health system in which opportunities for learning engender empowerment of everyone. The contributing authors share perspectives from diverse backgrounds. Almost all of them are motivated in part by some personal experience as a patient or caregiver during which they learned something about themselves, about others, or about the health system that touched and changed their lives. Their efforts are driven by partnerships between patients themselves and other stakeholders, recognizing the paramount importance of putting people at the center of their collaborative work to protect and improve health, often driven through processes of learning. The papers illuminate how patient (as well as family and community) participation advances the vision for a Learning Health System (LHS)—and in turn how an LHS supports patient-empowering initiatives. Indeed, the National Academy of Medicine (NAM) sees “engaged, empowered patients” as a key characteristic of an LHS,3 and the multi-stakeholder consensus Core Values Underlying a National-Scale Person-Centered Continuous Learning Health System (endorsed by over 100 organizations globally4 and referenced in the United States Federal Health IT Strategic Planning5) begins with “Person-Focused” as the first shared LHS Core Value6 (see Table 1). The papers in this theme issue bring a participatory LHS vision to life and paint vivid pictures of what it could look like and be like. The distinct person-centered approach to transforming health embodied in each paper manifests itself as a use case for an LHS sociotechnical infrastructure. Many authors illuminate how an LHS will advance or transform their work. When Learning Health Systems issued a general call for papers, we received an overwhelming response from individuals and organizations spanning the health spectrum and sharing their interest in patient empowerment through learning. Several authors of papers in this issue bring years or decades of being a patient or caregiver as their expertise. Others bring professional training in varied professions that must collaborate to realize a person-centered LHS. Some have made careers as patient and caregiver activists. Others have built nonprofit organizations and for-profit startups aimed at advancing patient empowerment. Still, others serve as leaders within federal government regulatory agencies, public health organizations, health IT organizations, advocacy organizations, patient communities, and academia. All of these authors are extraordinary communicators; all have compelling research to share or powerful stories to tell. We are grateful they chose to share them with the world through our open access online journal. “Of all the forms of inequality, injustice in health is the most shocking and inhuman.”8 From seemingly unlikely places, such as a federal regulatory agency, a nonprofit association with many of large health IT vendors as members, and a global pharmaceutical/life sciences company, other authors exude comparable passion for empowering patients to protect and improve their health and the health of others. Recognized patient activist “e-Patient Dave” deBronkart, citing the half-century-old The Structure of Scientific Revolutions by Dr Thomas Kuhn, has been among the earliest advocates for envisioning a new science of patient engagement.9 His thinking on the subject points to a natural complementarity with the science of learning systems when one considers his proposed definition for empowerment. Referencing a 2002 World Bank definition, deBronkart states, “Empowerment is increasing the capacity of individuals and groups to make choices and transform those choices into effective actions and outcomes.”10 Consider the apparent synergy between an area of science anchored in increasing the capacity of individuals and groups to make decisions and a hallmark of an LHS that “health-related decisions by individual members of society, care providers, and managers and planners of health services” are themselves underpinned by timely, actionable, trustworthy, and routinely updated best practice knowledge of what works best gleaned from the study of “every patient's characteristics and experiences….”11 In realizing an LHS at a nationwide or at an international scale, the importance of this science of empowerment becomes even more paramount when one recognizes that an LHS is not only “human intensive” but also that, “The system as a whole – not just the digital infrastructure, but also networks of people and institutions – will have to be understood not just as users of a technological infrastructure, but also as parts of the information system itself.”12 … [When patients] participate more actively in the process of medical care, we can create a new healthcare system with higher quality services, better outcomes, lower costs, fewer medical mistakes, and happier, healthier patients. We must make this the new gold standard of healthcare quality and the ultimate goal of all our improvement efforts: Not better hospitals. Not better physician practices. Not more sophisticated electronic medical systems. Happier, healthier patients.13 In Issue 1 of Learning Health Systems, an allusion to the four system-level requirements of an LHS (including that an LHS be “trusted and valued by all stakeholders”) by Editor-in-Chief Dr Charles P. Friedman suggests that “Transcendent research challenges… may require new methods and new modes of thinking that evolve naturally from the admixture of (diverse social and technical sciences) disciplines.”11 In this issue, we evidence the importance of including among these research challenges those associated with the study and advancement of empowerment of patients, caregivers, families, communities, and other stakeholders, in part through learning. These papers show how the emerging research methodologies they share can and must contribute to the (sociotechnical) science of learning systems. There is a saying in policy circles that if one is not at the table, he/she is likely on the menu. Patient activist Sharon Terry of the Genetic Alliance (and PCORnet's Executive Committee) gave a speech on participant-driven research using a similar phrase in its title last year.14 Further investment in the development of the envisioned scientific components will contribute invaluably to giving a seat at the table and a powerful voice in the dialogue shaping the future of health to patients, families, and those who advocate for and benefit from patient empowerment. It will prepare us for a paradigm shift in which, as Dr Eric Topol writes (to patients), “The Future of Medicine is in Your Hands”.15 It will form the foundation underpinning a people-powered transformation of health care and health,16 and perhaps even a corresponding patient-driven health information economy.17 A web server is designed and engineered. The internet protocol, IP, and HTTP were designed and engineered. The World Wide Web (WWW) was not. Rather, it emerged from the decentralized and locally autonomous actions of many independent actors acting within the framework of the WWW architecture. A building is designed and engineered. A city is planned and governed, but it emerges largely outside the direct control of a designer or engineer. A garden plan is designed, but the garden emerges, without either the control or the need for actions by the gardener.18 As an ultra-large scale (cyber-social) system, an LHS, especially at a nationwide scale, will have the emergent characteristics of the aforementioned WWW and city (and garden). Realizing it in a way that engenders the qualities desired will require that patients, consumers, and individual citizens be a part of the system and invaluable contributors to it, not merely passive recipients of its envisioned benefits, however benevolent. Patient empowerment will be an outcome of a LHS, but also an important engine propelling it. Just as an LHS cannot simply be built from a blueprint,11 an LHS cannot simply be built by others for patients; it must be built with and by patients (and all other stakeholders). While the papers in this theme issue generally highlight positive paths to addressing challenges and advancing empowerment, there are myriad studies (and individuals and organizations) that highlight present failings in our health care system to empower patients. Hence, the papers in this issue also provide guidance toward a course correction. As the future of health care and health moves in the LHS direction, the importance of patients shaping the design of the system becomes paramount. Think for a moment, outside of health care, about your interactions as a consumer in any system that (often in the name of efficiency) was designed without considering the needs of (or input from) consumers and workers, rendering them cogs in a machine. One example would be a service experience where a person serving a consumer must use a tool or application that constrains any ability to utilize their own skill and judgment, necessitating a process that stands in the way of a human interaction with the consumer. To an observer, it appears that the worker serves the commands of the device he/she uses and that the consumer is merely a passenger lacking autonomy and “along for the ride.” Another example would be where both the consumer and the local worker must engage in a process involving another worker at a national call center; by design, the national worker lacks the local knowledge or engagement with the consumer to help meaningfully, the local worker lacks the authority to help, the consumer (and both workers) are disempowered, and knowledge fragmentation in the system results in a process lacking empathy. A key hallmark of any person-centered system is empathy: i.e., knowing what it is like to stand in the consumer's shoes based on personalized relevant data about that consumer and knowledge derived from the experiences of others. In these aforementioned examples, the key participants in the systems (consumers and workers) were very likely not involved in designing or shaping the systems, and best practices from the science of human-centered design principles were likely not applied. Beyond putting the patient in the driver's seat of his/her own health, empowering patients to shape the transformative future of health anchored in an LHS will be essential to realizing an LHS that embodies the LHS Core Values and delivers on the promise of the LHS vision. Together, we have moved the LHS from impossible to imperative to inevitable. A future of health that involves big data and analytics will happen; it is already happening. What I believe we're really fighting for is the soul of this future.19 While our open access journal is anchored in a science underpinning “both the cyber-social and ultra-large-scale systemic character of the LHS,”11 this theme issues serves to remind us that there is something distinctive about health. At that time of this issue's release in July 2017, many Americans will have already celebrated the anniversary of the adoption of the Declaration of Independence which is grounded in the notion that all people are endowed with certain unalienable rights including rights to life, liberty, and the pursuit of happiness.20 A principle underpinning the United States legal system is that, in theory, when a threat to one's exercise of these unalienable rights is triggered, an individual is afforded rights (and sometimes tools and capabilities) to vigorously advocate to protect these paramount human rights. It is easy to see how an individual's health is central to his/her ability to exercise his/her fundamental human rights to life, liberty, and the pursuit of happiness. Yet when disease threatens a person's liberty or life today, he/she is not regularly told that he/she has rights to the information and tools he/she needs to vigorously advocate to protect his/her health; in certain ways, a person-centered LHS takes important steps toward changing that dynamic by empowering people through learning. The papers in this theme issue showcase select mechanisms by which an LHS can empower patients—with information, health literacy, personalized tools, connections to communities, and more—to be, in collaboration with their caregivers and care teams (and other stakeholders), strong advocates and activists to leverage learning to protect and promote their health as well as the health of others. Learning Health Systems serves as a gathering point (and perhaps an infrastructure component) for the community interested in the science of cyber-social learning systems as applied to health. It can also be a catalyst for advancing the science that will be foundational in driving this change in the way individuals and society relate to safeguarding and advancing health. Hence, these themes are interwoven into people's exercising of their human rights. Many of the authors in this issue have not only been engaged in conducting rigorous research and in pioneering initiatives, but they have also fought courageously and sacrificed greatly to advance patient empowerment. Some have accumulated scars on their extensive journeys championing patient empowerment and the LHS. I hope that the thoughts I have shared with you in this commentary and especially the papers featured in this first theme issue of Learning Health Systems will help to illuminate how and why these contributors were so willing to work steadfastly to advance this urgently important cause, endeavoring to disruptively transform the future of health. I wish to close by recognizing the late Jerry Matczak, a co-author of the paper entitled “Patient-centered drug development and the Learning Health System,”21 who passed away earlier this year. A champion of patient empowerment who worked as a social media guru and leader of a Clinical Open Innovation team at a global pharmaceutical/life sciences company, Jerry was widely lauded for actively listening to and communicating with patients, to advance clinical research and drug development.22 A vocal advocate for open sharing to advance human health, he was personally recognized for sharing his “unique perspective among geek-minded people,” harnessing humanity to draw the types of connections in science that will be at the heart of advancing the science of learning systems.23 Jerry Matczak's commitment to open innovation and community provides a powerful lens from which to view the papers in this issue as well as the emerging science that will underpin the development and advancement of the fabric weaving together a patient-empowering LHS. With motivation stemming from deeply personal family health experience, Jerry stated in a 2012 interview: “[By] acting openly, with honesty, transparency and integrity we intend to foster a community that will make a difference in people's lives. When you think about it that way, it's easy to commit.” 22

Franklin James Cook, Linda Langford, Kim Ruocco

The landmark report, Responding to Grief, Trauma, and Distress After a Suicide: U.S. National Guidelines, identifies the suicide bereaved as an underserved population and recommends systematic development of peer grief support to help meet the needs of survivors of suicide loss. A widespread array of peer grief support after suicide (PGSS) services exists nationally, but only as a decentralized network of autonomous programs. Some research indicates that peer support is generally helpful to the suicide bereaved, a finding that is reinforced by a large body of emerging research showing that peer support is effective in mental illness and substance abuse recovery. The practice, study, growth, and refinement of peer support in those fields have generated viable ideas about the elements and principles of effective peer support-for individual practitioners and for programs and organizations-that could be used to guide the systematic implementation of PGSS. In addition, a comprehensive PGSS program (Tragedy Assistance Program for Survivors) that currently serves a large population-survivors of suicide in the military-could be a model for national PGSS systems development. Finally, there are several frameworks for systems development-zero suicide, consumer-operated services, recovery-oriented systems of care, and the consumer action research model-that could guide the expansion and increased effectiveness of PGSS in keeping with the Guidelines' recommendation.

Elizabeth Welch

Much of the discussion of the ethical concerns involved in the care of those with Disorders of Consciousness (DOC) has been presented in terms of the dichotomous “right to die” / “right to life” (RTD/RTL) framework with nearly singular focus on (1) assessing whether the individual retains “consciousness,” and (2) making the “right” choices about the use of life sustaining treatments (LSTs). However, the lived experience of the family, friends and medical providers who have close contact with individuals with a DOC indicates that the ethical concerns involved cannot be reduced to the RTD/RTL framework, to proofs of consciousness, or to the right to make choices about treatment. Rather than advocate for a “right” choice in regards to use of LST in those with DOC, this essay utilizes the writings of Paul Ricoeur to illuminate the sources of our ethical confusion and to engage in deeper ethical reflection. I describe DOC from the perspective of neuroscience and review recent research. I then critique conceptions of autonomy and personhood within medical ethics, especially in so far as a model of consumer choice dominates conceptions of autonomy and cognitive capacity is considered a determinant of moral worth. I present Ricoeur’s understanding of autonomy as a relational project and his description of individuals as capable and fragile in varying degrees as an alternative. I proceed by examining the concepts of “sanctity of life” and “pain and suffering,” where I use Ricoeur’s description of all humans as acting and suffering, and his description of solicitude as the model for responding to suffering. I conclude with Ricoeur’s description of the ethical intention of “aiming at the ‘good life,’ with and for others, in just institutions” as an approach to analyzing ethical dilemmas and clarifying what it is at stake in various alternatives.

Juan Manuel Zaragoza Bernal

Marriage is about love, since the 19 th century onwards unless. If we ask people around us about the basis for a solid relationship, will be at the top of the list. What we look for in a relationship is a dependable, sincere, and affectionate partner. Someone to until death. Resentment is out of focus, here. It has nothing to do with real marriage. It has nothing to do with love. The romantic concept of we could find in this definition of marriage is the source of deep tensions between partners and, more interesting, into the subject itself. Confronted with difficult situations, love could be replaced with others (negative) feelings: hate, anger, and, commonly, resentment. The arousal of these feelings could generate a crisis within marriage, leading to the failure of the relationship. Or, in other situations, it could generate an identity crisis in one of the members of the marriage, putting his/her inner self at risk. I will explore the difficult conciliation of and resentment when one of the members of the marriage suffers a chronic disease. The narratives of the other part (the caregivers) show how this task is supposed to be the supreme proof of love, but at the same time, we can detect how resentment is repressed, as something that could damage the very identity of the caregiver. The case study will help to explore how the repression of resentment shapes the experience of disease, and is capital for the creation of the social identity of both: the and the sick. Arthur Conan Doyle will be my first case study. The story is well known. In 1892, just after a holydays in Switzerland, Louise Doyle (Arthur's wife) was diagnosed as having a severe case of tuberculosis. For the following fourteen years, Arthur cared of his wife. She had only been given three months to live in late 1893. If she lived for thirteen years more, it was because Arthur's care. This is a complex case, and we can approach it from different perspectives. Arthur Conan Doyle was a doctor, and he even attended a demonstration of a cure for tuberculosis by Professor Robert Koch in Berlin, in 1890. We know that he employed all his medical expertise in caring Louise. Care is not just about emotions, but also about technical skills. We can follow this path, but there are others we can explore too. Arthur was a rich man. Sherlock Holmes' adventures were a great success in late Victorian England, and Arthur became rich and famous. After Louise's disease, they travelled to Davos, Italy, and Egypt. He built a new house (Undershaw) in Surrey, where the weather was supposed to improve Louise's health. He bought the best medicines, and consulted with the best doctors. Care is an economical matter, and Conan Doyle had money enough to spend in Louise's treatments. But care is a social task, as well. The social self of the caregiver is at stake, and if he or she fails, the consequences could be the worst. This was Conan Doyle's case, also. He was the head of her family. Not only his wife and children, but her siblings and mother look at him for support. He had adopted this role from his childhood. He could not fail, his family and his own inner self were at risk. Technical skills, money, and social role. Care is about all that. And care is about emotions, of course, about love. We care of our loved ones, and we say their pain hurts us. We suffer with them, and we can cope with suffering because we them. But, what happens when fails? In 1897 Conan Doyle met Jean Leckie, and he fell in love with her. This relationship lasted until Louise's death. For the next ten years, Arthur tried to square his passion for Jean with his responsibility towards Louise. And here is where resentment (accompanied with selfdeception, frustration, and remorse) appeared. Through his letters and diaries, I will study this period of Arthur Conan Doyle's life, paying special attention to the emotional turmoil produced by this situation.