Patient Centeredness Research Articles

Towards integration of care in Portugal: Expansion of a new management model for the NHS

Abstract Introduction In 1999, the first Local Health Unit (LHU) was created in the Northern region of Portugal to improve management, share resources and integrate care. The LHU integrated a National Health Service (NHS) hospital and primary healthcare (PHC) services located within the same geographic area and became responsible for public health activities and the provision of care. Over the next few years, 7 LHUs were created, the last one in 2012. In 2024, the government expanded this model to the entire territory, creating 39 LHUs. This research analyses the objectives, characteristics and expected outcomes of the scale-up of LHUs. Methods This study utilised a mixed methods approach based on the 6 Ps - Problem, People (policy stakeholders), Process (policy development), Price tag (Resource allocation), Paper (policies, laws, regulations), Programmes (policy implementation); and the political, social and economic setting of the Policy Circle Framework. Findings A 2015 assessment revealed that LHUs did not differ from non-LHUs in terms of access, waiting times, clinical excellency, patient safety or patient centeredness. The degree of integration of care in LHUs seemed lower compared with non-LHUs. However, there was no systematic evaluation of the creation of the first LHU. Despite this, the government announced the intention to expand LHUs to the entire national territory, which culminated with the creation of 39 LHUs in 2024 to deliver integrated care, with an emphasis on the proximity and continuity of health services and promotion. Conclusions Despite the existing knowledge gap on the impacts of LHUs in health outcomes and management efficiency, LHUs can provide opportunities to advance integrated and patient-centred care and develop strategies for managing scarce resources, including the health workforce. Nevertheless, the integration of hospitals and PHC can threaten the centrality of primary health care both in terms of delivery of care and resource allocation.

Through the patients’ eyes: psychometric evaluation of the 64-item version of the Experienced Patient-Centeredness Questionnaire (EPAT-64)

BackgroundPatient-reported experience measures (PREMs) are valuable tools to evaluate patient-centredness (PC) from the patients’ perspective. Despite their utility, a comprehensive PREM addressing PC has been lacking. To bridge this gap,...

Model of integrated mental health video consultations for people with depression or anxiety in primary care (PROVIDE-C): assessor masked, multicentre, randomised controlled trial

ObjectiveTo evaluate whether an integrated mental health video consultation approach (PROVIDE model) can improve symptoms compared with usual care in adults with depression and anxiety disorders attending primary care.DesignAssessor masked,...

168 Real-world walking of people with the chronic lung disease COPD

Abstract Purpose Walking is crucial for active and healthy ageing, but it changes with age and in the presence of diverse health conditions, such as non-communicable diseases. In the field of the chronic lung disease COPD (chronic obstructive pulmonary disease), extensive research has been done on physical activity limitation, but little is known about the patterns of walking during daily life (i.e., real-world). We aimed to assess the levels and distribution of real-world walking (walking activity and gait parameters) in people with COPD compared with healthy adults, and across disease severity; and to identify domains of walking in COPD, using a single wearable device. Methods In a cross-sectional study, 550 people with COPD (37% women, with a mean (SD) age of 68 (8) years, postbronchodilator FEV1 54 (21) %) and 19 age-matched healthy adults were recruited in ten cities across eight countries. Subjects were given a single wearable device to wear at their lower back for one week. Twenty-five walking activity and gait parameters (e.g., number of steps, number of walking bouts (WB)>30s, walking speed in WB > 30s, cadence in WB > 30s, walking speed and cadence variability) were derived from the device outputs. Results Most walking activity and gait parameters were reduced in people with COPD compared to healthy adults, and according to COPD severity. Differences remained statistically significant after adjusting for age, sex, height and comorbidities in multivariable analyses. Factor analysis identified six distinct walking domains: Amount of walking, Patterns of walking, Pace, Rhythm, Pace variability and Rhythm variability. Conclusion Real-world walking in people with COPD is a multi-dimensional behaviour that is impaired as the disease progresses. These results may be used to set priorities and improve patient centricity in clinical practice, research and public health initiatives. Support/Funding Source This work was supported by the Mobilise-D project that has received funding from the Innovative Medicines Initiative 2 Joint Undertaking (JU) under grant agreement No. 820820. This JU receives support from the European Union’s Horizon 2020 research and innovation programme and the European Federation of Pharmaceutical Industries and Associations (EFPIA).

How Do Nurses Experience Relational Work in the Emergency Department—Qualitative Study

IntroductionThis study aimed to explore how nurses experience relational work in the emergency department. MethodsA qualitative design with 34 focus group interviews using an abductive thematic analysis were completed for this study. Participants were recruited from an annual mandatory continuous learning program in 2020-2022 at 2 university hospitals in the Capital Region of Denmark. We applied semistructured interviews in an instructor-supported reflection session on the topic “relational nursing care.” Group discussion was supported by an interview guide addressing key elements of the nurse-patient relationship as described in the fundamentals of care framework. ResultsAcute care nurses’ attention was primarily directed toward the initial patient assessment, rather than toward the later stages of the patient trajectory. Forming a relationship with the patient was highly individual and done at the discretion of each nurse. The key elements of relational nursing were not mutually exclusive, but the findings could be separated into biomedical and relational care, where biomedical tasks took precedence. DiscussionRelational care in the emergency department is optional and individually performed. Moreover, emergency nurses lack a vocabulary to express this type of work. Consequently, there is a risk that patients’ psychosocial needs are not sufficiently met. According to the emergency nurses participating in this study, nurses fall short when performing and describing relational care. Nurses need more knowledge to address the psychosocial patient needs during short-term hospital admissions. Relational care and patient centeredness also need to be acknowledged by nursing leaders and further developed.

Medical consultants’ experience of collective leadership in complexity: a qualitative interview study

PurposeThe aim of this study was to explore and understand the leadership experiences of medical consultants prior to a major hospital move. Health and care is becoming increasingly complex and there is no greater challenge than the move to a new hospital. Effective leadership has been identified as being essential for successful transition. However, there is very little evidence of how medical consultants experience effective leadership.Design/methodology/approachA qualitative methodology was utilized with one-to-one semi-structured interviews conducted with ten medical consultants. These were transcribed verbatim and analyzed using inductive thematic analysis. The research complied with the consolidated criteria for reporting qualitative research (COREQ).FindingsFour themes were found to influence medical consultants’ experience of leadership: collaboration, patient centredness, governance and knowledge mobilization. Various factors were identified that negatively influenced their leadership effectiveness. The findings suggest that there are a number of factors that influence complexity leadership effectiveness. Addressing these areas may enhance leadership effectiveness and the experience of leadership in medical consultants.Research limitations/implicationsThis study provides a rich exploration of medical consultants’ experience of collective leadership prior to a transition to a new hospital and provides new understandings of the way collective leadership is experienced in the lead up to a major transition and makes recommendations for future leadership research and practice.Practical implicationsThe findings suggest that there are a number of factors that influence complexity leadership effectiveness. Addressing these areas may enhance leadership effectiveness and the experience of leadership in medical consultants.Social implicationsClinical leadership is associated with better outcomes for patients therefore any interventions that enhance leadership capability will improve outcomes for patients and therefore benefit society.Originality/valueThis is the first research to explore medical consultants’ experience of collective leadership prior to a transition to a new hospital.

Patient-Centric Long-Acting Injectable and Implantable Platforms─An Industrial Perspective.

The increasing focus on patient centricity in the pharmaceutical industry over the past decade and the changing healthcare landscape, driven by factors such as increased access to information, social media, and evolving patient demands, has necessitated a shift toward greater connectivity and understanding of patients' unique treatment needs. One pharmaceutical technology that has supported these efforts is long acting injectables (LAIs), which lower the administration frequency for the patient's provided convenience, better compliance, and hence better therapeutical treatment for the patients. Furthermore, patients with conditions like the human immunodeficiency virus and schizophrenia have positively expressed the desire for less frequent dosing, such as that obtained through LAI formulations. In this work, a comprehensive analysis of marketed LAIs across therapeutic classes and technologies is conducted. The analysis demonstrated an increasing number of new LAIs being brought to the market, recently most as aqueous suspensions and one as a solution, but many other technology platforms were applied as well, in particular, polymeric microspheres and in situ forming gels. The analysis across the technologies provided an insight into to the physicochemical properties the compounds had per technology class as well as knowledge of the excipients typically used within the individual formulation technology. The principle behind the formulation technologies was discussed with respect to the release mechanism, manufacturing approaches, and the possibility of defining predictive in vitro release methods to obtain in vitro in vivo correlations with an industrial angle. The gaps in the field are still numerous, including better systematic formulation and manufacturing investigations to get a better understanding of potential innovations, but also development of new polymers could facilitate the development of additional compounds. The biggest and most important gaps, however, seem to be the development of predictive in vitro dissolution methods utilizing pharmacopoeia described equipment to enable their use for product development and later in the product cycle for quality-based purposes.

Evaluation of a psychological readiness program and final clinical practicum among final year nursing students: A mixed methods study

BackgroundFinal year nursing students may experience higher levels of stress owing to the increasing complexity and expectations from their clinical practicums. Enhancing psychological readiness may be a potential strategy to enhance nursing students' transition to the clinical area. ObjectiveTo evaluate the effects of a psychological readiness enhancement for transition to professional practice program and a 10-week clinical practicum on students' psychological wellbeing, resilience, practice readiness and confidence. DesignA sequential mixed-methods approach comprising of a single-group evaluation and descriptive qualitative study. SettingFinal year nursing students enrolled in an undergraduate nursing program from one autonomous university in Singapore was recruited. Participants148 final year nursing students participated in the single-group evaluation study. A total of 24 participants who completed the psychological readiness program were recruited in the qualitative study. MethodsThis study included two phases. Phase I comprised of an evaluation of a blended psychological readiness program and clinical practicum. Data was collected across three waves to assess nursing students' psychological wellbeing, resilience, practice readiness and confidence. In Phase II, a qualitative study using individual semi-structured online interviews was conducted to examine students' experiences of the psychological readiness program and clinical practicum. ResultsThe psychological readiness program led to significant changes in students' anxiety and patient centeredness scores. The accumulated effects of the psychological readiness and clinical practicum showed significant improvements in students' practice readiness and confidence. Although there were no significant improvements in depression, stress and resilience scores, there were improvements in the trend across three waves. Students attributed these improvements to the psychological readiness program and sharing by the alumni. ConclusionsThe findings of this study laid the foundation for the development of psychological readiness programs. However, larger scale studies using randomized controlled trial designs should be used to confirm the effects of these interventions.

Strategies to promote patient-centeredness within the healthcare industry: A grey-based multicriteria decision making methods.

The international policy agenda has recently advocated for the development of patient-centeredness in healthcare service delivery. Consequently, various stakeholders in the healthcare systems have expressed a vital need for identifying strategies and tools that can enhance patient-centeredness. The objective of this paper was to prioritise and benchmark the strategies that can improve patient-centeredness in healthcare service delivery. We employed a multi-stage research scenario that consisted of two phases: a phase including of a scoping review to identify the current strategies to improve patient-centeredness (PC); And, a phase including of a multicriteria best-worst method to assign weights to PC principles, and a questionnaire administered to a sample of experts for benchmarking the strategies derived from the literature using the Grey Multi-Attributive Border Approximation Area Comparison (MABAC-G) method. The most important principle of patient-centeredness was deemed to be access to care, while telehealth tools and Electronic Health Information Systems were respectively suggested as the most efficacious platforms for promoting patient-centeredness. We recommend that administrators and policy makers in the healthcare industry prioritise the implementation and research of strategies such as telehealth tools and electronic health information systems to enhance access and patient-centeredness in the healthcare systems.

Deprescribing in people living with frailty, multimorbidity and polypharmacy

Deprescribing is complex, and it should consider the individual context and embrace patient centredness and collaborative teamwork, including patients, relatives and/or caregivers. This article discusses the growing evidence supporting deprescribing in older patients and the barriers and challenges involved.

'Beyond the Reach of Palliative Care': A Qualitative Study of Patient and Public Experiences and Anticipation of Death and Dying.

The demands and costs of health care resulting from increasingly ageing populations have become a major public health issue in the United Kingdom and other industrially developed nations. Concern with cost containment and shortage of resources has prompted a progressive shift in responsibility from state provision of care to individual patients and their families, and from the institutional setting of the hospital to the domestic home. Under the guise of choice and patient centredness, end-of-life care is framed within a discourse of the 'good death': free from distress and discomfort and accompanied by significant others in the preferred place, usually assumed to be home. The promotion of the 'good death' as a technical accomplishment enabled by pre-emptive discussion and advance care planning has sidelined recognition of the nature and significance of the pain and suffering involved in the experience of dying. There has been little research into the disparity between policy and professional assumptions and the lived reality of end of life. In this paper, we present findings from a qualitative study of how terminally ill patients, bereaved family members, and members of the public understand, anticipate, and experience death and dying. These findings contribute to an important and timely critique of the normative idealisation of death and dying in health policy and practice, and the need to attend closely to the real-world experiences of patients and the public as a prerequisite for identifying and remedying widespread shortcomings in end-of-life care.

Facilitators and Barriers of Incremental Innovation by Fixed Dose Combinations in Cardiovascular Diseases.

Despite the availability of affordable pharmaceuticals treating cardiovascular diseases (CVDs), many of the risk factors remain poorly controlled. Fixed-dose combinations (FDCs), a form of incremental innovation, have already demonstrated improvements over combinations of single medicines in adherence and hard clinical endpoints. Nevertheless, there are many barriers related to the wider use of FDCs in CVDs. Our aim was to identify these barriers and explore system-level facilitators from a multi-stakeholder perspective. Identified barriers include (i) hurdles in evidence generation for manufacturers, (ii) limited acceptance of adherence as an endpoint by clinical guideline developers and policymakers, (iii) limited options for a price premium for incremental innovation for healthcare payers, (iv) limited availability of real-world evidence, and (v) methodological issues to measure improved adherence. Initiatives to standardize and link healthcare databases in European countries, movements towards improved patient centricity in healthcare, and extended value assessment provide opportunities to capture the benefits of FDCs. Still, there is an emerging need to facilitate the generalizability of sporadic clinical evidence across different FDCs and to improve adherence measures. Finally, healthcare payers need to be convinced to pay a fair premium price for the added value of FDCs to incentivize incremental innovation in CVD treatment.

Psychological health in Palliative Care: Thematic analysis of a psychiatrist’s and an art therapist’s clinical reflexive journals

Background: Patients receiving palliative care often face psychological distress, which can be challenging for clinicians to manage. Therefore, reflexive and visual journaling can be used as powerful techniques for clinician selfreflection and personal development. These journals are a form of practice wisdom, providing insights into psychological health in palliative care. Aim: This study aims to describe how patients receiving palliative care experience psychological health, explore the meaning of a palliative care clinician’s work and contribute to the understanding of psychological health in palliative care through the reflexive and visual journals of clinicians. Design: Using Gibb’s reflective cycle as a framework for journaling, this study employs reflexive and visual journaling through the lenses of a psychiatrist and an art therapist. Journal data were analysed using a thematic analysis approach. Setting/participants: The two first authors journaled 107 clinical encounters and created 36 pieces of response art detailing encounters with patients and their families, and clinical conversations in two palliative care centres. Results: Patient attributes and the clinical environment were observed to influence psychological health in palliative care. The patient’s ability to navigate dying, maintain personhood, exert resilience and experience satisfying relationships contribute to psychological health. A clinical environment comprising clinicians with holistic competencies, systems promoting interdisciplinary collaborations and a values-based culture that promotes patient centricity strengthens the delivery of psychological care. Conclusions: Good psychological health in palliative care extends beyond psychopathology and is influenced by the cardinal elements of being human, value systems and systemic elements in the therapeutic environment.

Attitude of Students and Audiologist Professionals towards Patient-Centered Care in Audiology

Abstract Background: In audiology, the service model has always been practitioner-centric or techno-centric. However, the model has evolved into client-centric over the years. Patient centeredness is a growing trend in healthcare as it improves the outcomes of the intervention and patient satisfaction. This study was conducted with the aim of determining the preferences of undergraduates, postgraduates, and working professionals toward a patient-centered framework for the service delivery model. Materials & methods: This study employed a survey design where the data was collected using an online questionnaire (patient–practitioner orientation scale). A total of 60 individuals participated in the survey which included undergraduate students, postgraduate students, and working professionals. Results: The analysis of the findings revealed that there was no significant difference in the attitude toward preferences between postgraduate students and working professionals. However, a significant difference was found between undergraduate students and working professionals and undergraduate students and postgraduate students. Conclusions: This study concludes that the postgraduate students and working professionals are more patient-centric than the undergraduate students. However, further studies are needed to compare the attitudes of working professionals with varying years of work experience.

Enhancing oncologist knowledge and skills through patient-centric medical education: A collaborative approach with LUNGevity.

e21007 Background: Patient centricity in healthcare delivery has evolved, driven by accumulating evidence of improved outcomes through patient empowerment. PeerView partnered with LUNGevity Foundation to develop multiple educational initiatives with a patient-centered approach to lung cancer care. Methods: 4 live events and 4 online enduring activities were developed to improve the knowledge and skills of oncologists and other healthcare professionals (HCPs) involved in the management of patients with small cell and non–small cell lung cancer. These initiatives followed a patient-centric approach, featuring: Learning objectives addressing incorporation of patient-centric approaches to provision of optimal and equitable lung cancer care in two of the activities; LUNGevity input on the co-creation and development of the activities, including curriculum planning, identifying faculty, highlighting advocacy resources, and incorporating the patient voice; Expert discussions framed with patient perspectives and illustrative case scenarios to highlight strategies for improving team-based collaboration, patient engagement, shared decision-making, and health equity in clinical care and research; Unique instructional elements, including patient focus group insights and video role play; and Tools designed to enhance clinician-patient communication, patient engagement in care, and shared decision-making Pre- and post-activity assessments included multiple choice questions to measure changes in knowledge and skills and Likert-style questions assessing intent to change practice. Responses from enduring activity participants were also compared with those from a matched sample of nonparticipants. Results: To date, 11,227 learners, including 8,112 oncologists, have participated in these activities. Substantial post-activity gains were consistent across all initiatives, with a 44-ppt average increase in knowledge and skills. Outcomes related to patient-centric care included increases of: 38 ppt in ability to implement team-based and patient-centric approaches to ensure timely and accurate diagnosis, appropriate biomarker testing, individualized treatment, and equitable care of all patients with NSCLC (43% to 81%); 44 ppt in ability to implement team-based and patient-centric approaches to ensure optimal and equitable use of immunotherapy in the care of all eligible patients with NSCLC (39% to 83%); and 15 ppt in intent to provide education, guidance, and resources to patients with lung cancer (68% to 83%). Conclusions: These initiatives demonstrated significant improvements in learner knowledge, skills, and confidence across all learning objectives. Furthermore, incorporation of patient-centric approaches represents an effective model for clinical education to increase HCPs’ compassion, empathy, and ability to provide effective and holistic patient care.

Validity and Reliability of the Sri Lankan Version of the Patient-Centered Questionnaire-Infertility (PCQ-Infertility)

Background: Reproductive healthcare of the highest calibre should encompass not only safety and effectiveness but also a patient-centered approach. Patients demand patient-centered subfertility treatment in addition to efficient medical management. Offering patient-centered care is crucial for both patients and healthcare professionals. The absence of a suitable instrument for measuring patient-centeredness poses a significant challenge in evaluating this essential aspect of care in Sri Lanka. The present study resulted in a culturally adapted and validated tool in Sinhala language to measure patient-centredness of care received by female partners of subfertile couples. Methods: The Patient Centredness Questionnaire-Infertility (PCQ-Infertility) was culturally adopted using a modified Delphi process, translated into Sinhala and assessed for its judgmental validity. The study was conducted September to December 2019. A cross-sectional study among 251 females attending the Subfertility Clinic at Teaching Hospital Mahamodara assessed the factor structure through exploratory factor analysis. The factor structure was confirmed with another cross-sectional study at the same setting among 250 females through confirmatory factor analysis. Test re-test reliability, internal consistency and inter-rater reliability were also assessed. Results: The validated PCQ-Infertility had 44 items with a seven-factor structure identified after exploratory factor analysis and confirmatory factor analysis with a combination of acceptable fit indices (SRMR of 0.079, CFI 0.862 and RMSEA 0.069). A Cronbach’s alpha value 0.761 assured high internal consistency. Test- retest and inter-rater reliability assessment gave satisfactory results with values exceeding 0.7 for all domains. Conclusion: Modified PCQ-Infertility is a valid and reliable instrument which can be used to assess patient centredness care received of subfertile females in Sri Lanka.

Patient versus person centeredness: embracing different perspectives

PurposeThe aim of this study is twofold: (1) to gain insight into the different perspectives on the relationship between patient and person centeredness and (2) to learn more about the differences between non-academic and academic stakeholders in the healthcare system.Design/methodology/approachThis mixed-methods study includes a scoping review on person and patient centeredness and in-depth interviews with patients, caregivers, staff and management of healthcare organizations. The data were analyzed by following the six phases of Braun and Clarke.FindingsThe analysis of the data showed four different perspectives on patient versus person centeredness: (1) they are synonyms; (2) one term is favorite; (3) they should be in balance; and (4) person centeredness is the surplus on top of patient centeredness.Research limitations/implicationsThere are different perspectives on patient versus person centeredness. Perspectives differ between people and can change over time. Some people feel like a patient all the time, other people feel like a person all the time, and some feel like a patient at one point in time and as a person at another point in time.Practical implicationsThese different perspectives can have important implications for the so-called moments of truth. In their role as patients, people value functional encounters and in their identity as people they value meaningful encounters with caregivers.Originality/valueBy unraveling these different perspectives, novel insights were found in the different perspectives people can take.

Abstract PO4-16-12: Patient initiated centricity towards improved communication, side effect management and follow-up care by Real World Evidence Survey from patients for patients – Preview of the Breast BRIDGister Platform

Abstract Background Treatment adherence is crucial for outcome improvement. Still up to 50% of patients interrupt e.g. endocrine treatment or other effective treatment choices due to side effects or miscommunication. Reasons may include limited time spent for patient information in daily routine and the intrinsic barriers to frankly tell the truth to the attending physicians. Therefore, a patient initiated survey has been compiled to comprehensively address all clinical, diagnostic and critical aspects of importance for patients by decentral data capture from patients at home via smart devices in a pseudonymized & interactive fashion to refocus on challenges regarding patients needs, fears and wishes to support evidence based statistical analysis of Real World Data. Materials and Methods Establishing a cloud-based IT Platform enabling nationwide, decentral data entry using Climedo clinical trial software tools without the need of any commercial app utilities and therefore obeying GDPR conform standards to create an interconnected online platform integrating 36 interconnected surveys comprising >1.200 singular questions has been set up between 2020 and 2022 based on patients content elaboration & wishes. The questionnaires address all Real World experiences e.g. at initial diagnosis, during primary treatment and all subsequent lines as well as side effect management with complementary medicine and follow up care realities. After 100 patients a preplanned statistical analysis has been performed to evaluate the feasibility of the patient oriented ePRO approach and demonstrate relevance of proof-of-concept results before entering international trial expansion. Descriptive analysis by Excel as well as Correlation analysis; Chi square and Partitioning tests using the SAS JMP® 9.0.0 software were performed. Results Despite in depth complexity > 85% of patients completed the whole survey. Age distribution of the pilot cohort revealed comparably younger patient age (28% between 30-39 years, 40% between 40-49 years, 24% between 50-59 and 10% being above 60 years) and dominance of Triple Negative Patients (~39%) participating the online survey in the pilot cohort. 97% of patients were treated in certified breast centers (50% in larger centers of bigger towns,15% in central clinics, 23% in university sites, 5% in local hospitals and 7% at office based doctors). Interestingly, 25% of patients did not or only partially understand their diagnosis and upcoming treatment. Time spent for communicating initial breast cancer diagnosis was less than 10 minutes for 25% of patients, while 13% did not remember. Exclusively one treatment option was discussed with 86% of patients. 78% have been informed about their initial breast cancer diagnosis in personal meetings, while 21% were informed by phone calls. 37% of patients had been informed about their patient rights. At preplanned interim analysis 38% of patients were lymphnode positive and 6% metastasized at initial diagnosis. 56% of patients were satisfied with their guideline conform follow-up-care, while 42% did pay for additional follow up care on their own. 85% of patients wished to have a risk-adopted, more individualized follow-up care. Conclusion Despite complexity and lengthiness > 85% of patients did complete the survey. There is an apparent need to have more time for initial confrontation with diagnosis and treatment options. Patients are frequently not informed about alternative treatment options as well as patient rights. Patients frequently feel under pressure in their life threatening situation and suffer substantial lack of information as well as appropriate personal communication. Patient centricity should focus on elaborated communication and information systems that support treatment decision acceptance and adherence. Further details analysis will become available in upcoming subanalysis of the Breast BRIDGister platform survey. Citation Format: Cornelia Stuewe, Ralph Wirtz, Christa Gress, Lena Schmidt, Veronika Schweighart, Sebastian Eidt, Claudia Schumacher, Julia Habraschka, Heidi Lehmann, Katrin Schuere. Patient initiated centricity towards improved communication, side effect management and follow-up care by Real World Evidence Survey from patients for patients – Preview of the Breast BRIDGister Platform [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO4-16-12.

Remote Monitoring and Data Collection for Decentralized Clinical Trials

Less than 5% of patients with cancer enroll in a clinical trial, partly due to financial and logistic burdens, especially among underserved populations. The COVID-19 pandemic marked a substantial shift in the adoption of decentralized trial operations by pharmaceutical companies. To assess the current global state of adoption of decentralized trial technologies, understand factors that may be driving or preventing adoption, and highlight aspirations and direction for industry to enable more patient-centric trials. The Bloomberg New Economy International Cancer Coalition, composed of patient advocacy, industry, government regulator, and academic medical center representatives, developed a survey directed to global biopharmaceutical companies of the coalition from October 1 through December 31, 2022, with a focus on registrational clinical trials. The data for this survey study were analyzed between January 1 and 31, 2023. Adoption of decentralized clinical trial technologies. The survey measured (1) outcomes of different remote monitoring and data collection technologies on patient centricity, (2) adoption of these technologies in oncology and all therapeutic areas, and (3) barriers and facilitators to adoption using descriptive statistics. All 8 invited coalition companies completed the survey, representing 33% of the oncology market by revenues in 2021. Across nearly all technologies, adoption in oncology trials lags that of all trials. In the current state, electronic diaries and electronic clinical outcome assessments are the most used technology, with a mean (SD) of 56% (19%) and 51% (29%) adoption for all trials and oncology trials, respectively, whereas visits within local physician networks is the least adopted at a mean (SD) of 12% (18%) and 7% (9%), respectively. Looking forward, the difference between the current and aspired adoption rate in 5 years for oncology is large, with respondents expecting a 40% or greater absolute adoption increase in 8 of the 11 technologies surveyed. Furthermore, digitally enabled recruitment, local imaging capabilities, and local physician networks were identified as technologies that could be most effective for improving patient centricity in the long term. These findings may help to galvanize momentum toward greater adoption of enabling technologies to support a new paradigm of trials that are more accessible, less burdensome, and more inclusive.

Bridging the gaps in patient education through aesthetic-based education: A concept analysis study.

Aesthetics is a branch of philosophy that has been entered into the philosophy of education for a long time. Reviewing the concept of aesthetics in education, we can see the components that can cover a number of challenges in the field of patient education. Focusing on the conceptual dimensions obtained from the analysis of this concept, the aim is matching the resulting conceptual categories with the gaps in the field of patient education. Using a scoping review, we reviewed the literature dealt with different dimensions of aesthetic-based education. Walker and Avant's concept analysis approach was used to inductively analyze the content obtained from the review of literature. The data were divided into three general groups of antecedents, attributes, and consequences of the aesthetic-based education concept, and the final conceptual model was defined. Interdisciplinary comparisons between educational and medical sciences were made to match the concept of aesthetic education with the field of patient education to cover its issues. During the scope review process of the texts, after screening the articles, 17 articles selected to enter the concept analysis stage. Concept analysis phase showed that the main conceptual categories of antecedents of aesthetic-based education are aesthetic-based intrapersonal competencies and aesthetic capacities of educational setting. The attributes include aesthetic-based educational content and teaching methods including unity in diversity, combination with art and being based on empathy. The consequences include subliminal learning and constraint-free learning. These conceptual dimensions can cover four important issues in patient education including patient satisfaction, pedagogical competences of health educators, patient centeredness, and empathetic relationship. Applying aesthetic concept in the patient education process can bridge part of the gaps in this process. So, this study can be an introduction to future innovative models based on aesthetic paradigm in the field of patient education.