Between a logic of disruption and a logic of continuation: Negotiating the legitimacy of algorithms used in automated clinical decision-making.

In both popular and academic discussions of the use of algorithms in clinical practice, narratives often draw on the decisive potentialities of algorithms and come with the belief that algorithms will substantially transform healthcare. We suggest that this approach is associated with a logic of disruption. However, we argue that in clinical practice alongside this logic, another and less recognised logic exists, namely that of continuation: here the use of algorithms constitutes part of an established practice. Applying these logics as our analytical framing, we set out to explore how algorithms for clinical decision-making are enacted by political stakeholders, healthcare professionals, and patients, and in doing so, study how the legitimacy of delegating to an algorithm is negotiated and obtained. Empirically we draw on ethnographic fieldwork carried out in relation to attempts in Denmark to develop and implement Patient Reported Outcomes (PRO) tools - involving algorithmic sorting - in clinical practice. We follow the work within two disease areas: heart rehabilitation and breast cancer follow-up care. We show how at the political level, algorithms constitute tools for disrupting inefficient work and unsystematic patient involvement, whereas closer to the clinical practice, algorithms constitute a continuation of standardised and evidence-based diagnostic procedures and a continuation of the physicians' expertise and authority. We argue that the co-existence of the two logics have implications as both provide a push towards the use of algorithms and how a logic of continuation may divert attention away from new issues introduced with automated digital decision-support systems.

Nurse navigation, symptom monitoring and exercise in vulnerable patients with lung cancer: feasibility of the NAVIGATE intervention.

We developed the Navigate intervention to improve survival among vulnerable lung cancer patients. In this intervention-only study, we examined feasibility in terms of recruitment, retention, attendance, adherence, and acceptability to specify adjustments to study procedures and intervention components prior to a randomized trial. The Navigate intervention includes nurse navigation, patient-reported outcomes, and physical exercise. Patients ≥ 18 years old, diagnosed with non-small cell lung cancer at any stage, with performance status ≤ 2, eligible for cancer treatment and vulnerable according to a screening instrument were included. The recruitment goal of eligible patients was 40% while the retention goal was 85%. The predefined cut-offs for sufficient attendance and adherence were ≥ 75%. Acceptability was evaluated by semi-structured interviews with participants, nurse navigators, and physiotherapists. Seventeen (56%) out of 30 screened patients were considered vulnerable and eligible for the study, 14 (82%) accepted participation, and 3 (21%) were subsequently excluded due to ineligibility, leaving 11 patients. Four patients dropped out (36%) and four patients died (36%) during follow-up and 3 (27%) were retained. All 11 patients participated in nurse sessions (mean 16, range 1-36) with 88% attendance and dialogue tools being applied in 68% of sessions. Ninety-one percent of patients responded to PROs (mean of 9 PROs, range 1-24) with 76% of the PRO questionnaires used (attendance) and 100% adherence (completion of all questions in PRO questionnaires), and 55% participated in exercise sessions with 58% attendance and 85% adherence. We identified important barriers primarily related to transportation, but overall acceptability was high. The Navigate intervention was feasible with high participation, acceptability and satisfactory adherence. Retention and exercise attendance were low, which resulted in adjustments.Trial registration: The feasibility study was initiated prior to the multicenter randomized controlled trial registered by ClinicalTrials.gov (number: NCT05053997; date 23/09/2021).

'Is this something I should be worried about?': A study of nurses' recontextualisation work when making clinical decisions based on patient reported outcome data.

As clinical care practices are becoming more digitalised, information about patients is increasingly being encoded as quantified data, and the processes of sorting data are often supported by algorithmic computations. One such practice becoming more prevalent across Western countries is the clinical use of Patient Reported Outcome (PRO) data. Drawing on ethnographic fieldwork carried out in a Danish setting among nurses managing PRO-based breast cancer follow-up, we examine how clinical decisions are made on the basis of PRO-data and what this requires from the nurses. By applying the concept of recontextualisation work as an analytical perspective, we shed light on the efforts of nurses when mobilising complementary information about patients in order to recontextualise the otherwise decontextualised data, thereby giving data practical value in clinical decision-making. Recontextualisation work, we show, is shaped by organisational structure, available resources, and nurses' professional capacity. Drawing analytical attention to the work of recontextualisation allows for a nuanced understanding of the efforts required to make data workable and hence what it takes to carry out clinical decisions in today's datafied healthcare system.

Targeting "hardly reached" people with chronic illness: a feasibility study of a person-centered self-management education approach.

BACKGROUND: Self-management education is critical to the development of successful health behavior changes related to chronic illness. However, people in high-risk groups attend less frequently or benefit less from patient education programs than do people with more socioeconomic advantages. AIM: The aim was to test the feasibility of a participatory person-centered education approach and tool-kit targeting self-management of chronic illness in hardly reached people. METHODS: After participating in a training program, educators (n=77) tested the approach in practice. Data collection included online questionnaires for educators (n=65), observations of education sessions (n=7), and interviews with educators (n=11) and participants (n=22). Descriptive statistics were calculated. Transcripts of interviews and observations were analyzed using systematic text condensation. Feasibility was examined in terms of practicality, integration, suitability, and efficacy. RESULTS: Educators had a positive response to the approach and found that the tools supported involving participants in education and support. Participant satisfaction varied, depending on the ability of educators to integrate the tools into programs in a meaningful way. The tools provided time for reflection in the education process that benefited participants and educators alike. Educators found it challenging to allow participants to help set the agenda and to exchange experiences without educator control. Barriers to use reported by educators included lack of time for both training and preparation. LIMITATIONS: The testing included varied groups of participants, some groups included members of hardly reached populations and others did not. Also, some tools were only tried in practice by a few educators. CONCLUSION: The approach was feasible in terms of practicality, integration, acceptability, and efficacy and perceived by educators as suitable for both hardly reached participants and those who are less disadvantaged. Implementation of the approach requires time for training and preparation.

Addressing challenges and needs in patient education targeting hardly reached patients with chronic diseases.

Some patients do not benefit from participation in patient education due to reasons related to disease burden, literacy, and socioeconomic challenges. In this communication, we address more specifically both the challenges that these hardly reached patients face in relation to patient education programs and the challenges educators face when conducting patient education with hardly reached patients. We define principles for the format and content of dialogue tools to better support this patient group within the population of individuals with diabetes.

Simplicity, flexibility, and respect: preferences related to patient education in hardly reached people with type 2 diabetes.

Individuals with lower income and less education are two to four times more likely to develop diabetes than more advantaged individuals. In response to this, there is a need for developing health promotion activities targeting hardly reached populations. The aim of this study was to examine the perspectives of hardly reached people with type 2 diabetes on patient education, focusing on their wishes and needs regarding format and approach. Data were collected through qualitative interviews with nine individuals with type 2 diabetes with little or no education and characterized as hardly reached patients by health professionals. Interviews were transcribed verbatim and analyzed according to systematic text condensation. We identified four main categories of preferences for patient education: 1) flexibility related to start time, duration, and intensity; 2) simple and concrete education tools, with regard to design and extent; 3) being together, related to meeting people in a similar situation; and 4) respectful educators, related to constructive patient-educator relationships. Insights into the preferences of hardly reached people with diabetes can contribute to the development of appropriately tailored patient education for this patient group.