Artificial Intelligence and Patient-Centered Decision-Making

Advanced AI systems are rapidly making their way into medical research and practice, and, arguably, it is only a matter of time before they will surpass human practitioners in terms of accuracy, reliability, and knowledge. If this is true, practitioners will have a prima facie epistemic and professional obligation to align their medical verdicts with those of advanced AI systems. However, in light of their complexity, these AI systems will often function as black boxes: the details of their contents, calculations, and procedures cannot be meaningfully understood by human practitioners. When AI systems reach this level of complexity, we can also speak of black-box medicine. In this paper, we want to argue that black-box medicine conflicts with core ideals of patient-centered medicine. In particular, we claim, black-box medicine is not conducive for supporting informed decision-making based on shared information, shared deliberation, and shared mind between practitioner and patient

Hard paternalism, fairness and clinical research: why not?

Jansen and Wall suggest a new way of defending hard paternalism in clinical research. They argue that non-therapeutic research exposing people to more than minimal risk should be banned on egalitarian grounds: in preventing poor decision-makers from making bad decisions, we will promote equality of welfare. We argue that their proposal is flawed for four reasons. First, the idea of poor decision-makers is much more problematic than Jansen and Wall allow. Second, pace Jansen and Wall, it may be practicable for regulators to uncover the values that a potential research participant holds when agreeing to enter a research project, so their claim that we must ban such research projects for all if we are to ban them for poor decision-makers looks to be unmotivated. Third, there seem to be cases where the liberty to enter the sort of research project Jansen and Wall discuss is morally weighty, and arguably should outweigh concerns of egalitarian distribution. Fourth, banning certain types of research, which seem on the face of it to offer an unfavourable risk-benefit ratio, would have unwelcome consequences for all clinical research, which Jansen and Wall do not recognize

Values based practice and authoritarianism

Values based practice (VBP) is a radical view of the place of values in medicine which develops from a philosophical analysis of values, illness and the role of ethical principles. It denies two attractive and traditional but misguided views of medicine: that diagnosis is a merely factual matter and that the values that should guide treatment and management can be codified in principles. But, in the work of KWM (Bill) Fulford, it goes further in the form of a radical liberal view: that the idea of an antecedently good outcome should be replaced by that of a right process. That however leads to a dilemma as to whether it can account for its own normative status. Given that difficulty, why might one adopt the radical version? I sketch a possible motive drawing on Rorty’s rejection of authoritarianism which replaces objectivity with solidarity as the aim of judgement. But I argue that, nevertheless, this does not justify the rejection of the more modest particularist version of VBP

Patients’ Perspectives on Engaging in Their Healthcare while Hospitalized

Aims and objectives To examine patients’ experiences and preferences for engaging in their healthcare while hospitalised. Background Promoting patient engagement or involvement in healthcare has become an important component of contemporary, consumer‐oriented approaches to quality care. Previous research on patient engagement highlights that preferences for engagement are not assessed while hospitalised, leading to patient role confusion and frustration. Methods Semistructured interviews were conducted with patients from January–March 2017 to examine their experiences and preferences for engaging in their care while hospitalised on medical‐surgical units in the United States. Inductive thematic analysis was used to uncover the themes from the interview transcriptions. The reporting of research findings followed the COREQ checklist. Results Seventeen patients, eight male and nine female, aged between 19–83 years old were interviewed. Patients had a difficult time articulating how they participated in their care while hospitalised, with the majority stating there were few decisions to be made. Many patients felt that decisions were made prior to or during hospitalisation for them. Patients described their engagement through the following themes: sharing the subjective, involvement of family, information‐gathering, constraints, “I let them take care of me,” and variability. Conclusions Engagement is a dual responsibility of both nurses and patients. Patients’ experiences highlight that engagement preferences and experiences are not universal between patients, speaking to the importance of assessing patient preferences for engagement in health care upon hospital admission. Relevance to clinical practice The articulation of what patients actually experience in the hospital setting contributes to improve nursing practice by offering insight into what is important to the patient and how best to engage with them in their care. The constraints that patients reported facing related to their healthcare engagement should be used to inform the delivery of future engagement interventions in the acute care setting

Promoting Adherence to Influenza Vaccination Recommendations in Pediatric Practice.

OBJECTIVES: In the United States, nonadherence to seasonal influenza vaccination guidelines for children and adolescents is common and results in unnecessary morbidity and mortality. We conducted a quality improvement project to improve vaccination rates and test effects of 2 interventions on vaccination guidelines adherence. METHODS: We conducted a cluster randomized control trial with 11 primary care practices (PRACTICE) that provided care for 11 293 individual children and adolescents in a children\u27s health care system from September 2015 through April 2016. Practice sites (with their clinicians) were randomly assigned to 4 arms (no intervention [Control], computerized clinical decision support system [CCDSS], web-based training [WBT], or CCDSS and WBT [BOTH]). RESULTS: During the study, 55.8% of children and adolescents received influenza vaccination, which improved modestly during the study period compared with the prior influenza season ( P = .009). Actual adherence to recommendations, including dosing, timeliness, and avoidance of missed opportunities, was 46.4% of patients cared for by the PRACTICE. The WBT was most effective in promoting adherence with vaccination recommendations with an estimated average odds ratio = 1.26, P \u3c .05, to compare between preintervention and intervention periods. Over the influenza season, there was a significantly increasing trend in odds ratio in the WBT arm ( P \u3c .05). Encouraging process improvements and providing longitudinal feedback on monthly rate of vaccination sparked some practice changes but limited impact on outcomes. CONCLUSIONS: Web-based training at the start of influenza season with monthly reports of adherence can improve correct dose and timing of influenza vaccination with modest impact on overall vaccination rate

Therapy-based exercise from the perspective of adult patients: a qualitative systematic review conducted using an ethnographic approach

© The Author(s) 2019.Objectives: Many patients do not meet recommended levels of therapy-based exercise. This review aims to explore how adult patients view being prescribed therapy-based exercise, the information/education they are given and receive and if/how they independently practise and adhere. Design: A qualitative systematic review conducted using an ethnographic approach and in accordance with the PRISMA statement. Sources: PubMed, CINAHL, SCOPUS and EMBASE databases (01 January 2000–31 December 2018). Methods: Qualitative studies with a focus on engagement/adherence with therapy-based exercise were included. Data extraction and quality appraisal were undertaken by two reviewers. Results were discussed and data synthesized. Results: A total of 20,294 titles were screened, with data extracted from 39 full texts and data from 18 papers used to construct three themes. ‘The Guidance received’ suggests that the type of delivery desired to support and sustain engagement was context-dependent and individually situated. ‘The Therapist as teacher’ advocates that patients see independent therapy-based exercise as a shared activity and value caring, kind and professional qualities in their therapist. ‘The Person as learner’ proposes that when having to engage with and practise therapy-based exercise because of ill-health, patients often see themselves as new learners who experience fear and uncertainty about what to do. Patients may have unacknowledged ambivalences about learning that impact on engagement and persistence. Conclusion: The quality of the interaction between therapists and patients appears integral to patients engaging with, and sustaining practice of, rehabilitation programmes. Programmes need to be individualized, and health care professionals need to take patients’ previous experiences and ambivalences in motivation and empowerment into account.Peer reviewe

The unseen and unacceptable face of digital libraries

The social and organisational aspects of digital libraries (DLs) are often overlooked, but this paper reviews how they can affect users' awareness and acceptance of DLs. An analysis of research conducted within two contrasting domains (clinical and academic) is presented which highlights issues of user interactions, work practices and organisational social structures. The combined study comprises an analysis of 98 in-depth interviews and focus groups with lecturers, librarians and hospital clinicians. The importance of current and past roles of the library, and how users interacted with it, are revealed. Web-based DLs, while alleviating most library resource and interaction problems, require a change in librarians' and DL designers' roles and interaction patterns if they are to be implemented acceptably and effectively. Without this role change, users will at best be unaware of these digital resources and at worst feel threatened by them. The findings of this paper highlight the importance of DL design and implementation of the social context and supporting user communication (i.e., collaboration and consultation) in information searching and usage activities. © Springer-Verlag 2004

Codesigned Shared Decision-Making Diabetes Management Plan Tool for Adolescents With Type 1 Diabetes Mellitus and Their Parents: Prototype Development and Pilot Test

Background: Adolescents with type 1 diabetes mellitus have difficulty achieving optimal glycemic control, partly due to competing priorities that interfere with diabetes self-care. Often, significant diabetes-related family conflict occurs, and adolescents’ thoughts and feelings about diabetes management may be disregarded. Patient-centered diabetes outcomes may be better when adolescents feel engaged in the decision-making process. Objective: The objective of our study was to codesign a clinic intervention using shared decision making for addressing diabetes self-care with an adolescent patient and parent advisory board. Methods: The patient and parent advisory board consisted of 6 adolescents (teens) between the ages 12 and 18 years with type 1 diabetes mellitus and their parents recruited through our institution’s Pediatric Diabetes Program. Teens and parents provided informed consent and participated in 1 or both of 2 patient and parent advisory board sessions, lasting 3 to 4 hours each. Session 1 topics were (1) patient-centered outcomes related to quality of life, parent-teen shared diabetes management, and shared family experiences; and (2) implementation and acceptability of a patient-centered diabetes care plan intervention where shared decision making was used. We analyzed audio recordings, notes, and other materials to identify and extract ideas relevant to the development of a patient-centered diabetes management plan. These data were visually coded into similar themes. We used the information to develop a prototype for a diabetes management plan tool that we pilot tested during session 2. Results: Session 1 identified 6 principal patient-centered quality-of-life measurement domains: stress, fear and worry, mealtime struggles, assumptions and judgments, feeling abnormal, and conflict. We determined 2 objectives to be principally important for a diabetes management plan intervention: (1) focusing the intervention on diabetes distress and conflict resolution strategies, and (2) working toward a verbalized common goal. In session 2, we created the diabetes management plan tool according to these findings and will use it in a clinical trial with the aim of assisting with patient-centered goal setting. Conclusions: Patients with type 1 diabetes mellitus can be effectively engaged and involved in patient-centered research design. Teens with type 1 diabetes mellitus prioritize reducing family conflict and fitting into their social milieu over health outcomes at this time in their lives. It is important to acknowledge this when designing interventions to improve health outcomes in teens with type 1 diabetes mellitus