Hospitalised patients as stewards of their own antibiotic therapy: a qualitative analysis informing the strategic design of interventions to encourage shared decision-making in tertiary hospital settings in Singapore.

Background: Shared decision-making (SDM) on antibiotic therapy may improve antibiotic use in tertiary hospitals, but hospitalised patients are apprehensive about being involved in it. Understanding the facilitators and barriers to SDM can inform the design and implementation of interventions to empower these patients to engage in SDM on their antibiotic therapies. Methods: We conducted qualitative interviews with 23 adult patients purposively sampled with maximum variation from the three largest tertiary-care hospitals in Singapore (April 2019─October 2020). Thematic analysis was conducted using the Theoretical Domains Framework and Capability, Opportunity, Motivation, Behaviour (COM-B) model to identify areas for intervention. Results: Hospitalised patients lacked comprehensive knowledge of their antibiotic therapies and the majority did not have the skills to actively query their doctors about them. There was a lack of opportunities to meet and interact with doctors, and patients were less motivated to engage in SDM if they had a self-perceived paternalistic relationship with doctors, trusted their doctors to provide the best treatment, and had self-perceived poor knowledge to engage in SDM. To empower these patients, they should first be educated with antibiotic knowledge. Highlighting potential side effects of antibiotics could motivate them to ask questions about their antibiotic therapies. Environment restructuring, as facilitated by nurses and visual cues to nudge conversations, could create opportunities for interactions and motivating patients into SDM on their antibiotic therapies. Conclusion: Education and environmental restructuring should be explored to empower hospitalised patients to engage in SDM on their antibiotic therapies.

Reliability and validity of the Chinese version of the coronary artery disease empowerment scale (CADES) in patients with coronary artery disease after percutaneous coronary intervention.

BACKGROUND: Empowerment is a comprehensive concept involving intrapersonal, interactional, and behavioral aspects. However, there is a lack of a specific empowerment scale for Coronary artery disease (CAD) related to knowledge and skills in China. The reliability and validity of the Coronary Artery Disease Empowerment Scale (CADES) need to be tested. This study aimed to assess the reliability and validity of the Chinese version of CADES among patients with CAD in China. METHODS: The study adopted a cross-sectional design. After obtaining the copyright by contacting the author, the original English CADES was developed into Chinese by forward translation, back-translation, cross-cultural adaptation, and a pretest (30 patients). The Chinese version of CADES was administered to 391 CAD patients between September 2022 and June 2023, with the reliability and validity of the version evaluated. Exploratory factor analysis and confirmatory factor analysis were performed to examine the underlying factor structure of the translated questionnaire. The Cronbach's α coefficient, Guttman's split-half coefficient, and McDonald's omega coefficient were calculated to verify the scale's reliability. RESULTS: For the Chinese version of CADES, the scale-content validity index was 0.972, with the item-content validity index ranging from 0.86 to 1.00. The questionnaire comprised 25 items, and exploratory factor analysis extracted four factors with loadings > 0.40, explaining 62.382% of the total variance. An acceptable model fit was achieved (χ2/df = 1.764, RMSEA = 0.060, TLI = 0.901, CFI = 0.912, IFI = 0.913). The Cronbach's α coefficient of the total questionnaire was 0.928, with coefficients for the four factors ranging from 0.683 to 0.913. The split-half reliability coefficient was 0.777, and the McDonald's omega reliability coefficient was 0.926. CONCLUSIONS: The Chinese version of CADES is reliable and valid among CAD patients in China. This instrument can serve as a valuable reference for guiding the implementation of targeted intervention strategies tailored to the empowerment status of CAD patients in clinical practice.

Patient and public involvement and engagement in the ASCEND PLUS trial: reflections from the design of a streamlined and decentralised clinical trial.

INTRODUCTION: ASCEND PLUS is a randomised controlled trial assessing the effects of oral semaglutide on the primary prevention of cardiovascular events in around 20,000 individuals with type 2 diabetes in the UK. The trial's innovative design includes a decentralised direct-to-participant invitation, recruitment, and follow-up model, relying on self-completion of online forms or telephone or video calls with research nurses, with no physical sites. Extensive patient and public involvement and engagement (PPIE) was essential to the design and conduct of ASCEND PLUS. AIM: To report the process and conduct of PPIE activity in ASCEND PLUS, evaluate effects on trial design, reflect critically on successes and aspects that could have been improved, and identify themes and learning relevant to implementation of PPIE in future trials. METHODS: PPIE activity was coordinated centrally and included six PPIE focus groups and creation of an ASCEND PLUS public advisory group (PAG) during the design phase. Recruitment to these groups was carefully considered to ensure diversity and inclusion, largely consisting of adults living with type 2 diabetes from across the UK. Two members of the PAG also joined the trial Steering Committee. Steering Committee meetings, focus groups, and PAG meetings were conducted online, with two hybrid workshops to discuss PPIE activity and aspects of the trial. RESULTS: PPIE activity was critical to shaping the design and conduct of ASCEND PLUS. Key examples included supporting choice for participants to either complete the screening/consent process independently online, or during a telephone or video call interview with a research nurse. A concise 'initial information leaflet' was developed to be sent with the initial invitations, with the 'full' information leaflet sent later to those interested in joining the trial. The PAG reviewed the content and format of participant- and public-facing materials, including written documents, online screening forms, animated videos, and the trial website, to aid clarity and accessibility, and provided input into the choice of instruments to assess quality of life. CONCLUSIONS: PPIE is integral in ASCEND PLUS and will continue throughout the trial. This involvement has been critical to optimising the trial design, successfully obtaining regulatory and ethical approval, and conducting the trial.

Patient Input into the Electronic Health Record: Co-Designing Solutions with Patients and Healthcare Professionals.

Patient-generated health data (PGHD) is the person's health-related data collected outside the clinical environment. Integrating this data into the electronic health record (EHR) supports better patient-provider communication and shared decision-making, empowering patients to actively manage their health conditions. In this study, we investigated the essential features needed for patients and healthcare providers to effectively integrate PGHD functionality into the EHR system. Through our collaborative design approach involving healthcare professionals (HCPs) and patients, we developed a prototype and suggestion, using Estonia as a model, which is the ideal approach for collecting and integrating PGHD into the EHR.

Sustainability in Participatory Health: Applying WHO's Operational Framework.

The World Health Organization's Operational Framework for Climate Resilient and Low Carbon Health Systems outlines 10 broad components for the development and maintenance of health systems that respond effectively to climate-related challenges. This work analyses the WHO framework from a participatory health informatics perspective and identifies specific initiatives involving non-professionals that align with the framework. Citizen and patient participation in the development of climate-resilient health systems is not only possible but also necessary to maximize climate resiliency at the community and global levels.

How to Tell Whether Patients Engage and Use a Patient Portal - An Analysis of Five Functions.

BACKGROUND: The road to a more sustainable healthcare system includes creating a digital interface to the healthcare system that patients can use to engage in their health problems while outside the consultation room. The aim of the study was to evaluate trends in the use of functions in a patient portal and assess which functions were most likely to contribute to sustainable healthcare. STUDY DESIGN: Open, uncontrolled retrospective analysis of citizens' use of the patient portal. METHODS: Extraction and statistical analysis of log data. RESULTS: Log analysis revealed that patients engaged with the patient portal to make appointments, fill out and submit questionnaires, send messages to their care provider, inspect their laboratory results, and view notes about themselves. The functions that displayed a significantly increasing trend were the number of appointments made, the number of messages sent, and the number of checked test results. DISCUSSION: While portal engagement can reduce patient dependency on healthcare services, external factors also influence this outcome. Further research is needed to investigate which functions support healthcare sustainability and enhance patient empowerment, possibly through other study designs.

Elevating Patient Engagement: Implementing EHR-Integrated Medication Reminders for Kidney Transplant Patients.

Digital health can enhance self-management of patients such as usage of medication reminders, thereby improving health outcomes. However, for successful implementation of such interventions, integration with the electronic health record (EHR) is useful. We evaluated the implementation of an integrated patient portal medication reminder tool in kidney transplant patients. Overall, 40.5% of the patients agreed that integrated EHR medication reminders assisted them in taking their medication on time.

Experiences of Decision Making and Attitudes Toward Digital Health Services Among Older Adults in Finland.

Shared decision making (SDM) is based on the clinical expertise of healthcare professionals and patients' preferences and values. Digital health services may offer new possibilities for patient-generated data e.g. in SDM. This study aimed to assess older adults' experiences of decision making in healthcare and attitudes toward digital health and social services. Data were collected via an online survey of 629 respondents. Results showed that digital services are considered beneficial, yet half of respondents needed guidance in their use. Many factors affect SDM and the perceived benefits of digital services. Based on our findings digital services are expected to provide guidance and individualised user experience. More research is needed to provide services with equitable access for people with special needs.

Integrating Chatbot Functionality in a Patient Summary Based Healthcare System.

The integration of chatbots in healthcare has gained attention due to their potential to enhance patient engagement and satisfaction. This paper presents a healthcare chatbot providing comprehensive access to patient summaries, aligned with the European Patient Summary. Leveraging Natural Language Processing (NLP) capabilities, our chatbot employs intent classification using the fine-tuned bioBERT model to categorize user queries effectively and extract relevant information from the patient summary stored in a database. We detail our methodology, which involves dataset creation, hyperparameter tuning, and model evaluation. Results demonstrate the effectiveness of our approach, with the trained model achieving high precision, recall, and F1 score across intent classes. Our study underscores the potential of emerging NLP techniques in patient interaction and healthcare delivery, covering the way for smarter, user-friendly companions.

How Do Cancer Patients Keep Track of Their Patient Journeys?

Cancer patients undergo long periods of treatment and follow-up, and it is challenging to keep track of appointments, treatment plans etc. This paper report from a study involving 41 patients and next-of-kin focusing on their strategies for managing the patient journey. Most patients take an active role, employing a variety of tools. The national patient portal is seen as useful for accessing information and keeping an overview but does not alone meet their information needs.

Challenges Implementing Patient and Public Involvement in a Digital Health Agile Project Which Includes Research, Business and Software Development.

Patient and public involvement (PPI) is a practice for involving future users in the design, development, and research of health technologies. There is increasing interest and demand for PPI, but little evidence based methodological support for integrating PPI in agile development processes. Multiple sclerosis (MS) is a chronic condition that severely impacts the lives of patients and requires active patient involvement. In this paper, we present the results of a case study, examining the adoption and integration of PPI into the development of a digital therapeutics solution for MS. The results highlight five critical phases that proved to be challenging: selecting patient participants, onboarding of patient participants and employees, framing tasks for patient participants, communication between patient participants and the rest of the development team, and reimbursements. The results are useful in creating evidence-based guidelines and methods for supporting the adoption of PPI.

Enhancing Patient Empowerment and Health Literacy: Integrating Knowledge Graphs with Language Models for Personalized Health Content Delivery.

Health literacy empowers people to access, understand and apply health information to effectively manage their own health and to be an active participant in healthcare decisions. In this paper we propose a conceptual model for cognitive factors affecting health literacy and related socioeconomic aspects. Then we develop the HEALIE Knowledge Graph to represent the model, drawing from various medical ontologies, resources, and insights from domain experts. Finally, we combine the Knowledge Graph with a Large Language Model to generate personalised medical content and showcase the results through an example.

'I Didn't Know What Was Going to Happen': Children's and Young People's Experiences and Their Involvement Before and After Selective Dorsal Rhizotomy.

AIMS: To explore experiences, expectations, and involvement of children and young people (CYP) in decision-making for selective dorsal rhizotomy (SDR) surgery, post-operative physiotherapy treatment and outcomes. METHODS: A qualitative study design using one to one interviews. Five CYP (2 girls and 3 boys) participated, and interviews lasted between 45 min and 2 h. Data were analyzed using thematic analysis. RESULTS: Children and young people are reliant on their parents to make decisions and inform them of the SDR process. Experiences of living with cerebral palsy and its management are centered on their routine social, psychological, and physiological challenges. Individual characteristics and attributes of CYP have an impact on how they cope with the rehabilitation burden and adjust to their changing levels of function and participation. CONCLUSIONS: Although CYP reported that SDR offers them a greater 'freedom to choose' in how they participate in daily life, further consideration is required to meet their psychosocial needs, particularly in preparing for SDR and adjusting afterwards.

Exploring the MAPPING application to facilitate risk communication and shared decision-making between physicians and patients with gynaecological cancer.

This is an observational study in which we evaluated current levels of risk communication (RC) among gynaecological oncologists and their view on the Mapping All Patient Probabilities in Numerical Graphs (MAPPING) application as a possible tool to facilitate RC and shared decision-making (SDM). In part A, we audio-recorded 29 conversations between gynaecological oncologists and patients when discussing treatment options. In part B, interviews were performed with eight gynaecological oncologists.RC and SDM were measured using two observer-based measures, that is, the RC content (RCC) tool (scale 0-2) and the OPTION-5 instrument (scale 0-100). We used CollaboRATE questionnaire (scale 0-10) and a self-developed survey to assess patient-reported RC and SDM. In part B, we evaluated physicians' attitudes regarding the use of the MAPPING application to support RC. Patients were minimally involved in the decision-making process (OPTION-5 25.9%±13.4 RCC 0.21±0.18). Patient-reported SDM was high (mean collaboRATE score 9.19±1.79) and patients preferred receiving numeric information, whereas most physicians used qualitative risk terms rather than exact numbers. In part B, gynaecologists had a positive attitude towards the MAPPING application. However, they stated that the app was difficult to use improvement of layout and better implementations are needed.

A study on obese patients' participation in cancer screening programs: an example from Turkey.

OBJECTIVE: Obesity is associated with many types of cancers. Despite this, the participation of obese individuals in cancer screenings is limited. The aim of this study was to evaluate the cancer screening-related attitudes of obese patients. METHODS: The study included 185 obese patients who presented to the obesity center (OC) and 191 obese patients who presented to the family medicine outpatient clinic from October to December 2019. The participants in both groups were first asked whether or not they had ever undergone any cancer screening tests and then provided with relevant training. After 3 months, the participants were contacted again and their attitudes toward cancer screening tests were re-evaluated. RESULTS: Patients who followed in the OC were found to have higher awareness of and compliance with cancer screening tests than the obese patients admitted to the outpatient clinic. The factors of being female, being followed in the OC, and residing in an urban area were positively associated with participation in cancer screening tests. CONCLUSION: Monitoring obese patients in target-oriented facilities such as an OC increases the chance of success in the fight against obesity and related health problems.

A shared decision-making intervention between health care professionals and individuals undergoing Pulmonary Rehabilitation: An iterative development process with qualitative methods.

BACKGROUND: Pulmonary Rehabilitation (PR) services typically offer programmes to support individuals living with COPD make rehabilitation choices that best meet their needs, however, uptake remains low. Shared Decision-Making (SDM; e.g., Patient Decision Aids (PtDA)) interventions increase informed and values-based decision-making between individuals and healthcare professionals (HCPs). We aimed to develop an intervention to facilitate PR SDM which was acceptable to individuals living with COPD and PR HCPs. METHODS: An iterative development process involving qualitative methods was adopted. Broad overarching frameworks included: complex intervention development framework, the multiple stakeholder decision making support model, and the Ottawa Decision Support Framework. Development included: assembling a steering group, outlining the scope for the PtDA, collating data to inform the PtDA design, prototype development, alpha testing with individuals with COPD (n = 4) and PR HCPs (n = 8), PtDA finalisation, and design and development of supporting components. This took nine months. RESULTS: The PtDA was revised six times before providing an acceptable, comprehensible, and usable format for all stakeholders. Supporting components (decision coaching training and a consultation prompt) were necessary to upskill PR HCPs in SDM and implement the intervention into the PR pathway. CONCLUSIONS: We have developed a three-component SDM intervention (a PtDA, decision coaching training for PR healthcare professionals, and a consultation prompt) to support individuals living with COPD make informed and values-based decision about PR together with their PR healthcare professional. Clear implementation strategies are outlined which should support its integration into the PR pathway.

Impacts of Clinical Decision Support Systems on the Relationship, Communication, and Shared Decision-Making Between Health Care Professionals and Patients: Multistakeholder Interview Study.

BACKGROUND: Clinical decision support systems (CDSSs) are increasingly being introduced into various domains of health care. Little is known so far about the impact of such systems on the health care professional-patient relationship, and there is a lack of agreement about whether and how patients should be informed about the use of CDSSs. OBJECTIVE: This study aims to explore, in an empirically informed manner, the potential implications for the health care professional-patient relationship and to underline the importance of this relationship when using CDSSs for both patients and future professionals. METHODS: Using a methodological triangulation, 15 medical students and 12 trainee nurses were interviewed in semistructured interviews and 18 patients were involved in focus groups between April 2021 and April 2022. All participants came from Germany. Three examples of CDSSs covering different areas of health care (ie, surgery, nephrology, and intensive home care) were used as stimuli in the study to identify similarities and differences regarding the use of CDSSs in different fields of application. The interview and focus group transcripts were analyzed using a structured qualitative content analysis. RESULTS: From the interviews and focus groups analyzed, three topics were identified that interdependently address the interactions between patients and health care professionals: (1) CDSSs and their impact on the roles of and requirements for health care professionals, (2) CDSSs and their impact on the relationship between health care professionals and patients (including communication requirements for shared decision-making), and (3) stakeholders' expectations for patient education and information about CDSSs and their use. CONCLUSIONS: The results indicate that using CDSSs could restructure established power and decision-making relationships between (future) health care professionals and patients. In addition, respondents expected that the use of CDSSs would involve more communication, so they anticipated an increased time commitment. The results shed new light on the existing discourse by demonstrating that the anticipated impact of CDSSs on the health care professional-patient relationship appears to stem less from the function of a CDSS and more from its integration in the relationship. Therefore, the anticipated effects on the relationship between health care professionals and patients could be specifically addressed in patient information about the use of CDSSs.

Patient Empowerment for Those Living with Parkinson's Disease.

Parkinson's disease (PD) poses a number of challenges for individuals, affecting them physically, mentally, emotionally, and socially. The complex nature of PD necessitates empowering patients to address their unique needs and challenges, fostering improved health outcomes and a better quality of life. Patient empowerment is a multifaceted concept crucial to enhancing healthcare outcomes, particularly in chronic conditions such as PD. However, defining patient empowerment presents challenges due to its varied interpretations across disciplines and individuals. Essential components include access to information, development of self-care skills, and fostering a supportive environment. Strategies for patient empowerment encompass health literacy, education, and shared decision-making within a trusted healthcare provider-patient relationship. In PD, patient empowerment is crucial due to the disease's phenotypic variability and subjective impact on quality of life. Patients must navigate individualized treatment plans and advocate for their needs, given the absence of objective markers of disease progression. Empowerment facilitates shared decision-making and enables patients to communicate their unique experiences and management goals effectively. This paper provides a comprehensive overview of the dimensions and strategies associated with patient empowerment, its definition and the facilitators that are necessary, emphasizing its critical importance and relevance in Parkinson's management. At the end of this review is a personal perspective as one of the authors is a person with lived experience.

A New Process Model for Relationship-Centred Shared Decision-Making in Physical Medicine and Rehabilitation Settings.

INTRODUCTION: We present a relationship-centred shared-decision-making (RCSDM) process model to explicate factors that shape decision-making processes during physical medicine and rehabilitation (PMR) encounters among patients, their care partners and practitioners. Existing shared decision-making (SDM) models fall short in addressing the everyday decisions routinely made regarding persons with chronic disabilities who require high levels of support, their care partners and rehabilitation practitioners. In PMR, these everyday decisions are small scale, immediate and in service to a larger therapeutic goal. They can be thought of as micro-decisions and involve multiple practitioners, care partners and patients. How micro-decisions are made in this context is contingent on multiple roles and relationships among these relevant parties. Our model centres on micro-decisions among patients, their care partners and practitioners based on our disorders of consciousness (DoC) research. METHODS: To develop our model, we examined peer-reviewed literature in SDM in PMR, chronic disability and person-centeredness; formed collaborations and co-created our constructs with rehabilitation practitioners and with care partners who have lived experience of caring for persons with DoC; analysed emerging empirical data and vetted early versions with expert scientific and clinical audiences. Our model builds from the core tenets of relational autonomy, and scholarship and activism of disability advocates. FINDINGS: Our model conceptualizes four non-hierarchical levels of analysis to understand the process of micro-decision-making in chronic disability and medical rehabilitation: social forces (historical and sociological); roles and relationships (multiple and intersecting); relational dimensions (interactional and contextual) and micro-decision moments (initiation, response and closure). DISCUSSION: Relationships among patients, their care partners and practitioners are the intersubjective milieu within which decisions are made. Our conceptual model explicates the process of micro-decision-making in PMR. PATIENT OR PUBLIC CONTRIBUTION: Care partners (or caregivers) and rehabilitation practitioners are active members of our team. We work together to develop research projects, collect, analyse and disseminate data. The conceptual model we present in this manuscript was co-created-input from care partners and practitioners on previously collected data became the impetus to develop the RCSDM process model and share co-authorship in this manuscript.