Patient Participation Research Articles

The role of shared decision-making in cancer pain management: Insights from a systematic review.

e24078 Background: Effective pain management in cancer care is crucial for patient quality of life. Shared decision-making (SDM) interventions are increasingly recognized for their potential to improve patient outcomes by facilitating patient engagement in care decisions. This systematic review synthesizes evidence on the impact of SDM interventions in cancer pain management. Methods: This systematic review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We conducted a comprehensive search across multiple databases, including PubMed, EMBASE, Scopus, CINAHL, PsycINFO, Web of Science, and the Cochrane Library. The search also extended to grey literature sources such as conference proceedings, dissertations, and unpublished reports to ensure a thorough coverage of the subject matter. Our search strategy employed a combination of MeSH terms and keywords related to 'decision making,' 'patient participation,' 'pain management,' and 'cancer.' This strategy was tailored to each database's unique syntax and search operators. Results: Ten studies, including six pilot and feasibility studies and four randomized controlled trials (RCTs) and Preintervention-Postintervention studies, were systematically reviewed. The interventions implemented diverse SDM strategies ranging from digital tools and personalized education to clinical decision support systems, targeting key aspects of pain management and patient-provider communication. Frequent intervention components included patient-reported outcome dashboards, symptom management support, and educational resources for pain management. The Tailored Education and Coaching (TEC) intervention notably increased pain-specific patient communication by 31%, while the PAINRelieveIt intervention did not significantly impact analgesic adherence but effectively reduced pain misconceptions among caregivers. Some interventions, like the Carevive CPS, showed high patient involvement in SDM (94.1%) and compliance with quality oncology practice initiative metrics (98%). However, the effectiveness of these interventions varied, with some showing no significant impact on primary pain outcomes. The variability in measured outcomes such as pain intensity, analgesic adherence, and patient satisfaction indicates a context-dependent effectiveness of SDM interventions, highlighting the importance of personalized approaches and the role of implementation strategies in influencing patient engagement and intervention success. Conclusions: SDM interventions in cancer pain management are diverse in structure and impact. Some interventions show promise in improving communication and reducing misconceptions, but their direct effect on pain outcomes varies.

A qualitative analysis of religious coping and participation in patients with head and neck cancer.

e24093 Background: Head and neck cancer (HNC) and its treatment sequelae result in substantial disfigurement, depression, and isolation. Though up to 7 out of 10 cancer patients lean on prayer or other forms of spirituality for support, little is known about the significance of prayer and religious communities for patients with HNC. There is also a dearth of literature on the role of clergy as spiritual support for patients with HNC. In this qualitative study, we explore religious coping and barriers to community engagement both from a patient and clergy perspective. Methods: We purposively sampled ten patients with HNC from a single, comprehensive cancer center and twelve clergy for interviews. Patients were selected from a larger study of religious engagement and symptomatic distress. Clergy were recruited from a network of churches near the cancer center. Both patients and clergy completed semi-structured interviews, which were then transcribed and analyzed by descriptive content analysis. Results: Four main themes emerged from patient interviews: 1) HNC-related physical symptoms (dysphagia, stoma, impaired speech) hindered relationship-building with others and structured religious groups. 2) Most patients used positive religious coping, citing frequent prayer to God for strength during treatment and peace regardless of disease outcome. Few patients used negative religious coping, describing feelings of doubt and abandonment by God. 3) Patients predominantly found spiritual (prayer) and practical comfort (encouragement, phone calls) outside of religious communities through family, physicians, and support groups. 4) Barriers to religious community involvement included physical disability, satisfaction with individual spirituality, and religious community politics. Among clergy, barriers to patient engagement in religious communities included: lack of health literacy to understand patient needs, resource limitations, insufficient hospital emphasis on holistic health, and little awareness of opportunities for aid apart from psychosocial support. Overall, most clergy and patients believed faith to be an integral part of coping with head and neck cancer. Conclusions: Though patients with HNC experienced some isolation due to physical symptoms, many found spiritual support through private practices of prayer or individual relationships. Patient and clergy views on barriers to religious community involvement diverged; many patients felt satisfied with personal practices, and clergy felt distanced from patients. While future research should focus on clinical elicitation of religious coping strategies, our patients suggest the successful adaptation of such strategies to private contexts when faced with physically debilitating cancer diagnoses.

Construction and Application of Patient-Participated Health Care Guidance Plan for Patients with Decompensated Hepatitis B Cirrhosis.

The goal of this study was to develop and assess the effectiveness of a patient-engaged healthcare guidance plan for individuals with decompensated hepatitis B cirrhosis. This study employed literature review, situational analysis, and expert consultations to create a healthcare guidance plan that includes patient participation for those suffering from decompensated hepatitis B cirrhosis. Between January 2022 and January 2023, 86 patients with this condition admitted to our hospital were selected through convenience sampling and randomly assigned into two groups using a random number table. The control group (n=43) received standard care, while the intervention group (n=43) received the novel patient-engaged healthcare guidance in addition to standard care. We compared both groups in terms of anxiety and depression levels, self-care capability, uncertainty about their illness, and overall quality of life. Upon discharge, scores for the Self-Rating Anxiety Scale (SAS), Self-Rating Depression Scale (SDS), and Mishel's Uncertainty in Illness Scale (MUIS) decreased in both groups compared to their scores at admission (P<0.05), with the intervention group showing more significant improvements than the control group (P<0.05). Additionally, scores for the Self-Care Ability Scale (ESCA) and the component threshold scores of the Health Survey Short Form (SF-36) increased for both groups from admission to discharge (P<0.05), with the intervention group showing greater improvements than the control group (P<0.05). The patient-engaged healthcare guidance plan developed for individuals with decompensated hepatitis B cirrhosis proved to be highly effective. It significantly reduced patient anxiety and depression, enhanced self-care capabilities, diminished illness uncertainty, and improved overall quality of life.

Engagement of culturally diverse communities in primary care research.

The underrepresentation of ethnic minorities and low-income groups in primary care (PC) research hinders the development of effective treatments for diverse populations. To develop a framework that general practice staff and researchers can use to improve the participation of underserved groups in PC research. This study was undertaken across 10 GP practices in South London serving 150 658 patients. Practices are distributed across ethnically diverse and highly deprived communities. A mixed-methods approach was utilised. Retrospective data were collected on patient participation in research studies across the practices between July 2022 and July 2023. Professional and patient focus groups, and a patient questionnaire, were undertaken to understand awareness and knowledge of, enablers for, and barriers to research participation. Over the 12-month period, 627 patients participated in PC research studies across the 10 practices. Black African and Black Caribbean patients accounted for 26% of the practices' patient population but were significantly underrepresented in research, comprising only 11% of participants. Patients of Asian backgrounds accounted for 11% of the practices' population but made up 20% of research participants. Lack of awareness of research participation opportunities, fear of side effects, language barriers, and mistrust of researchers were some of the barriers to participation. Participants highlighted that trust in their GP, education, and transparency of research processes were key to building long-term engagement. This study provides insights into poor recruitment of specific ethnic minorities into primary care studies. The authors identified adaptations to research engagement activities, which are required to ensure that participation is improved.

Breaking barriers for cancer clinical trials: A multi-tiered interventional approach to boost racial and ethnic minority participation in early-phase studies.

TPS1639 Background: Racial and ethnic minority populations are underrepresented in cancer clinical trials. The USC Norris Comprehensive Cancer Center (USC NCCC) has multiple clinical trial recruitment sites, including the Los Angeles General Medical Center (LAG), the largest safety-net hospital in the western USA. LAG partners with USC to provide cancer care to the underserved minority population of LAC, including clinical trials. As a result, between 2015-2022 a total of 120 LAG patients were accrued to phase I clinical trials; enrolled subjects were 66% Hispanic, 21% Asian, 4% Black, and 9% other. An interventional study was designed to further enhance the referral and participation of racial and ethnic minority patients from other Los Angeles County (LAC) safety-net facilities. The study is funded by the Stand up to Cancer Diversity in Early Development Clinical Trials Research Grants Program. Methods: This interventional study has 3 specific aims. First, to identify barriers to referral for minority and underserved patients: Qualitative interviews will be conducted with key stakeholders in the LAC safety net system which will uncover barriers to referring minority and underserved patients. A screening tool developed by the NCI to characterize barriers will be used. Second, to implement a multi-component program to enhance the referral of patients to early-phase clinical trials. The intervention addresses system-level, provider-level, and patient-level factors to improve the process, with a demonstration site compared to a non-demonstration site. Key features include a streamlined referral process for healthcare professionals with a singular centrally operated email managed by a specialized facilitator, weekly meetings to assign trials to prospective patients, and facilitation of approval and scheduling for referrals. We will educate providers regarding trials and exchange feedback on the referral process. We will extend resources to patients to assist with financial and transportation limitations. We will compare change in referral and enrollment rates at baseline and after the intervention for both the demonstration site and non-demonstration site. Third, to explore the impact of remotely conducted clinical trials: A clinical trial (NCT05340309) administers study drug subcutaneously and uses telemedicine visits, wearable sensors, and a smartphone app for monitoring. This pilot trial will be analyzed to determine the model’s impact on barriers to enrollment. The above interventions may provide a model that can be adapted in other healthcare delivery settings to optimize referral and enrollment of racial and ethnic minorities.

Breaking through barriers: Unraveling challenges in clinical trial participation among oncologic patients in a developing country.

11144 Background: Clinical trials are vital for advancing cancer research and treatment development, yet obstacles to participation impede progress, particularly in regions with limited clinical research awareness, such as Brazil. Methods: This study was conducted in a single cancer center in São Paulo, Brazil, between 2020 and 2022. A tailored questionnaire comprising demographic (age, gender, income) and barrier-related sections explored patient-related (10 questions), protocol-related (7 questions), and physician-related (5 questions) barriers. Results: Among 206 oncologic patients enrolled in the study, 43.7% were from the public healthcare system, and 56.3% had private insurance. Patients who self-declared as white were 59.7%, and those who self-declared as brown/black were 35.9%. Patient-related challenges included unfamiliarity with trial participants (84.6%), concerns about daily life disruptions (75.4%), and transportation difficulties (66.2%). Protocol-related obstacles involved fears of unknown side effects (62.3%), inability to choose treatment (47.6%), and potential assignment to a placebo group (46.8%). Physician-related barriers included communication issues, strained doctor-patient relationships (94.7%), and patient deference to doctors' decisions (55.4%). Higher-income patients and those in the public health system demonstrated greater clinical research awareness. Conclusions: The study emphasizes the critical role of patient education in overcoming barriers to clinical trial participation in oncologic patients. Furthermore, it underscores the necessity of addressing disparities among minority populations, such as non-white individuals with lower incomes, to transform clinical research and ensure universal access to newer therapies. Efforts should be directed towards inclusivity, bridging awareness gaps, and fostering a comprehensive understanding of the benefits of clinical trial participation for all cancer patients.

Bridging the gap: Leveraging AI to enhance access to clinical trials for underrepresented and underserved populations with cancer.

e13701 Background: National guidelines emphasize the crucial role of clinical trials (CTs) participation for all cancer patients. Despite this, significant barriers hinder access, particularly for underrepresented populations. Patients encounter obstacles such as geographic disparities and limited knowledge of tumor genetics, which impact their access to innovative CTs in metropolitan areas and academic centers. Furthermore, the increasing requirement for specific genetic profiles poses an additional challenge. This study aims to assess the impact of digital health platforms on improving access to CTs, with a specific focus on barriers related to ethnicity, geographic location, and disease knowledge. Methods: Leal (formerly, Trialjectory) is an AI-based platform that matches cancer patients to CTs based on self-reported medical profiles. The study included a diverse cohort of 39,031 users who completed the questionnaire. The patients’ geographic distribution across the US was analyzed, considering proximity to medical/academic centers, willingness to travel, and disease knowledge. Additionally, we examined genetic testing and biomarker knowledge across various clinical and sociodemographic groups. Results: The digital platform significantly improved geographic and ethnic diversity among CT seekers. Compared to industry standards of as low as 3% CT diversity, nearly a quarter of platform users were non-whites. Users outside major metropolitan areas, where CT enrollment is traditionally lower, were also better represented. Markedly, non-whites reported a lower willingness to travel outside their residence for CT participation compared to their white counterparts (p &lt; 0.0001). A gap in disease knowledge was more evident in minority groups (p &lt; 0.0001), with African Americans having a lower probability of knowing their mutation status compared to other ethnic groups. Conclusions: Access to CTs is hindered by barriers such as ethnicity, location, and knowledge. AI-based platforms swiftly identify and resolve these issues, empowering healthcare and support organizations to address individual patient concerns and boost diversity in CTs. AI analysis pinpoints underrepresented populations and regions with limited trial access, paving the way for tailored education and support initiatives to encourage informed decision-making. Strategically establishing trial sites in relevant areas addresses limited travel willingness due to cultural or socioeconomic constraints. AI technologies offer a promising approach to mitigate disparities, improve disease knowledge, ensuring equitable CT access, and enhancing healthcare outcomes for underrepresented populations.

Evidence-based assessment and treatment of military/Veteran PTSD: Reflections on 15 years of practice

LAY SUMMARY This reflection following 15 years of military/Veteran clinical practice reviews special assessment and treatment considerations, with a focus on prolonged exposure therapy for posttraumatic stress disorder. It discusses common assumptions about evidence-based psychotherapy that can negatively impact treatment outcome and patient motivation and participation in treatment. The widely varying clinical presentations of the Canadian military population and unique nature of military service, as well as its impact on mental health, are reviewed. Key practice suggestions include the importance of identifying the index trauma, using outcome monitoring, and understanding the theory of each of the gold-standard trauma-focused psychotherapies, as well as the rationale for each included intervention, so that clinicians can tailor treatments to patients as clinically required. Common misunderstanding and complexities related to trauma-focused psychotherapies are discussed, including the goal of treatment and clinician hesitation to implement evidence-based psychotherapies. The intention of this reflection is to increase discussion, contribute to a greater understanding and deeper appreciation for the uniqueness of military/Veteran patients, and promote advancement and innovation in research and clinical practice.

Amplifying the Patient's Voice in Oncology Early-Phase Clinical Trials: Solutions to Burdens and Barriers.

Dose-finding oncology trials (DFOTs) provide early access to novel compounds of potential therapeutic benefit in addition to providing critical safety and dosing information. While access to trials for which a patient is eligible remains the largest barrier to enrollment on clinical trials, additional direct and indirect barriers unique to enrollment on DFOTs are often overlooked but worthy of consideration. Direct barriers including financial costs of care, travel and time investments, and logical challenges including correlative study designs are important to bear in mind when developing strategies to facilitate the patient experience on DFOTs. Indirect barriers such as strict eligibility criteria, washout periods, and concomitant medication restrictions should be accounted for during DFOT design to maintain the fidelity of the trial without being overly exclusionary. Involving patients and advocates and incorporating patient-reported outcomes (PROs) throughout the process, from initial DFOT design, through patient recruitment and participation, is critical to informing strategies to minimize identified barriers to offer the benefit of DFOTs to all patients.

Innovative performance-based remuneration model for oncologists: Balancing productivity with quality of care in a Brazilian healthcare setting.

e23089 Background: Traditional fee-for-service (FFS) models in oncology often lead to biased healthcare delivery, prioritizing quantity over quality of care. Our objective was to develop and implement a comprehensive remuneration model for oncologists in Brazil that emphasizes both productivity and quality in patient care. Methods: The '4E' model forms the basis of our remuneration strategy. 'Effectiveness' measures clinical productivity through patient consultations, treatments, and participation in multidisciplinary activities. 'Structure' evaluates academic credentials and scientific contributions, 'Efficiency' examines adherence to clinical and administrative protocols, and 'Excellence' assesses quality interactions with patients and healthcare systems. These elements provide nuanced bonus adjustments to the effectiveness score, facilitating a balanced and comprehensive compensation approach. Adapted to various healthcare settings, the model accommodates different budgeting methodologies. Results: Implemented in February 2020, the model has led to significant improvements in service delivery. Between May 2020 and August 2023, consultations in private services increased by 36.8%, and patient numbers grew by 42.2%. The financial impact was notable, with more than a doubling of revenue, reflecting the model's success in enhancing both the volume and quality of healthcare provision. Conclusions: This multi-level remuneration model offers a comprehensive, ethical approach, aligning physician compensation with a broad range of professional activities and responsibilities. It demonstrates potential for enhancing healthcare delivery quality while ensuring financial sustainability. However, a limitation of our study is the lack of longitudinal quality measurement, an aspect we aim to address in future research. This suggests the model's replicability in diverse global oncology settings and underscores its relevance in the current healthcare landscape.

Systematic review of rural interventions addressing barriers and facilitators in recruitment and adherence of oncology clinical trials.

e13675 Background: Rural patients are significantly underrepresented in cancer clinical trials leading to an inequitable distribution of research funding and excluding rural patients from innovative care. Properly understanding the barriers and facilitators to rural patient participation in cancer clinical trials is essential to lessen this disparity in representation. Methods: EBSCO Medline, Embase, Cinahl, Cochrane and PsycInfo were systematically searched for articles related to the primary research objective. The search strategies focused on a combination of keywords pertaining to “rural populations”, “cancer”, and “clinical trials”. Additional search terms included the presence of “barriers” or “facilitators” within the articles. Articles were removed from the study if they were not written in English, were conducted outside the U.S., focused on pediatric populations, or lacked original data. Results: A systematic review of the literature reveals that barriers and facilitators to cancer clinical trial participation by rural populations are present at the patient, physician, and healthcare system levels. Notable barriers found in this review include the burden of travel, lack of patient knowledge about clinical trial participation, insufficient provider communication and awareness of current trials, and strict eligibility criteria. Promising facilitators include caregiver support, close physician support and contact, and programs to increase patient understanding of clinical trials. Potential future interventions include telemedicine, expanding monetary support for clinical trial transportation, utilizing RUCA codes to document disparities and elucidate further interventions, and cultivating stronger partnerships between industry and rural medical facilities, as well as between the NCI, academic institutions, and rural medical facilities. Conclusions: There is a significant and urgent need to strengthen this body of literature as is underscored by the apparent lack of cancer clinical trials in rural counties, specifically in the state of Texas (CPRIT). It is evident that barriers need to be further elucidated to ascertain why rural patients have less participation in clinical trials, and facilitators need to be further explored in order to sufficiently illustrate and thus effectively harness the power of facilitators in the pursuit of lessening disparities and improving cancer outcomes for rural patients.

Moving beyond the 'PPG': co-production and inclusion health.

We frequently fail to meaningfully incorporate patient voice in the development of health services, in particular the voices of those who are most disadvantaged. To share learning from a co-production project to improve primary care experience for those with multiple disadvantage and lived experience of trauma. We formed a collective of women (Bridging Gaps). Group members had lived experience of poverty, mental health challenges, addictions, homelessness, and sexual exploitation. Other members were researchers, GPs, and members of a third-sector organisation. We worked alongside local GPs to change how services were delivered. We collected interviews (n = 9), ethnographic data from group meetings (n = 3), and reflective notes from group members (n = 19). Data on our process were analysed using a framework approach drawn from the principles of trauma-informed care. We highlight the challenges for those with multiple disadvantages and trauma experience to meaningfully and safely engage in traditional Patient Participation Group (PPG) models. True co-production of services requires adequate resources and close collaborative working with local community organisations. Groups must be facilitated by those with relevant experience and the ability to both notice and manage power dynamics within the room. With sufficient support, co-production models have potential to empower group participants and improve health services. Partnership working between GPs, the third sector, and other organisations is vital. This can allow GPs to benefit from the expertise of those with relevant lived experience in tackling health inequalities.

Optimizing clinical research in a regional cancer center network: A survey-based approach.

e13560 Background: Conducting clinical research (CR) within regional care networks (RCNs) of comprehensive cancer centers presents unique challenges. This study aimed to identify and address such barriers at Memorial Sloan Kettering Cancer Center's (MSKCC) RCN, encompassing six sites across New York and New Jersey. Methods: A survey was conducted among medical oncologists at the RCN sites (February 2022-February 2023) to assess their perspectives on research-related challenges. The 23-question survey included multiple-choice, open-ended, and ranking questions regarding protocol availability, consenting processes, staffing support, and more. Results: 92/108 (85%) medical oncologists completed the survey, revealing three key challenges: 1. Limited protocol availability: Only 47% of the time was there a suitable trial available in the RCN for patients interested in clinical trials. Notably, 50% of attendings referred over 5 patients out of the RCN to MSKCC Main Campus for trial enrollment. Identified barriers to opening desired protocols (n=23 in total) included closed to accrual, pending amendments, and sponsor approval issues. 2. Inadequate investigator representation: 278 protocols lacked RCN physicians listed as consenting providers hindering potential patient participation. 3. Insufficient research staff including clinical trial nurses and administrative staff. Only 33% were satisfied with the research support, and 67% of physicians identified lack of clinical research support staff as the biggest barrier to accrual. 58% reported delays of more than one week in screening eligible patients due to insufficient support. Following these observations, interventions were implemented. Thirteen of the 23 studies were opened to accrual, all RCN physicians were added to the 278 protocols, and an analysis of staffing needs increased clinical trial nursing and administrative staff. Therapeutic and non-therapeutic accruals in the Department of Medicine rose by 10.5%, and total research visits increased by 21.4% compared to the previous year. Conclusions: This survey-based approach identified and addressed key barriers to CR within MSKCC's RCN, and in turn, increased research activity was noted. These findings offer a potential roadmap for optimizing research in similar networks by enhancing protocol accessibility, addressing staffing needs, and fostering collaboration. Further investigations are ongoing to address challenges in other clinical departments.

Exploring Factors Affecting Acceptance of Fecal Microbiota Transplantation for Patients with Recurrent Urinary Tract Infections: a Descriptive Qualitative Study.

Patients with recurrent urinary tract infections face complex management challenges. Fecal microbiota transplantation is a superior treatment for chronic infectious diseases, but limited patient knowledge affects treatment decisions. This study aims to identify factors associated with hesitancy towards fecal microbiota transplantation among patients with recurrent urinary tract infections, to help physicians and nurses in providing accurate and useful information to patients. A descriptive qualitative approach was employed, utilizing semi-structured interviews conducted with patients experiencing recurrent urinary tract infections who expressed hesitancy towards fecal microbiota transplantation. The interviews took place between September 2021 and December 2022. Thematic analysis was conducted on the semi-structured interviews to identify perceived facilitators and barriers associated with fecal microbiota transplantation. The analysis included interviews with thirty adult female patients with recurrent urinary tract infections. Four facilitators influencing patients' decision-making regarding fecal microbiota transplantation were identified: (1) the motivating role of hope and expectations for active patient participation; (2) the influence of healthcare providers, as well as family members and friends on patients' decisions to pursue fecal microbiota transplantation; (3) the patients' perception of fecal microbiota transplantation as a low-risk treatment option; and (4) the dedication to the advancement of medical treatments. In contrast, two primary barriers to accepting fecal microbiota transplantation were identified: (1) that conventional treatment controls disease activity, while fecal microbiota transplantation effects remain uncertain; and (2) that safety concerns surrounding fecal microbiota transplantation. Comprehensive information about fecal microbiota transplantation, including donor selection, sample processing, the procedure, and potential discomfort, is essential for patients and families to make informed treatment decisions. CHiCTR2100048970.

Importance of information-seeking styles among patients with cancer pre- and post-treatment: A URCC NCORP Research Base study.

1527 Background: Understanding of information needs and information-seeking styles of patients with cancer is critical for shared decision-making and high quality care. Most patients with cancer want to be involved in the decision-making process but have unmet information needs regarding their disease and its treatment. The goal of this study is to 1) identify information needs and 2) investigate factors associated with information-seeking styles pre-and-post treatment among patients with cancer. Methods: This is a secondary data analysis of a longitudinal study of 1003 patients from nine community oncology practices across the United States that assessed information needs of patients with cancer. We recruited patients aged ≥18 years with a newly diagnosed cancer. Patients supplied demographic and clinical information at enrollment; information needs assessment including concerns (score ranging, 0-100) and anticipated side effects (0-60), questions on information-seeking styles (1-item), decision-making preferences (1-item), and resource usage (5-items) were obtained within two weeks pre-and-post treatment. We performed multinomial logistic regression to evaluate the association of information needs including concerns, anticipated side effects, and decision-making preferences with information-seeking styles (active vs. passive) at pre-and-post treatment. The analysis was adjusted for age, gender, race, marital status, education, overall health, and cancer and treatment types. Results: Mean age was 60.5 (SD=13.0) years. Most were White (93.0%), female (64.0%), had some college (54.3%), and were diagnosed with breast cancer (47.0%). The sources of health information included friends (52.7%), pamphlets (60.2%), and experts (75.6%). Of the total, 43.8% reported that they preferred shared decision making but had concerns about understanding the diagnosis (70.2%) and treatment plan (70.7%). On logistic regression, preference for shared decision making (vs. doctor making all decisions; Odds Ratio (OR) pre-treatment=1.87, p=.01; OR post-treatment =2.3, p&lt;.001), taking notes while meeting with doctor (vs. not taking notes; OR pre-treatment =2.2, p&lt;0.001; OR post-treatment =1.8, p=0.01), and information sought that could be useful later (vs. not useful; OR pre-treatment = 1.9, p=.03; OR post-treatment =1.3, p=0.38) were associated with greater odds of active information seeking. Education and cancer type (pre-treatment) and age, cancer, and treatment types (post-treatment) were significantly associated with active information seeking. Conclusions: Shared decision making and taking notes during doctor visits are crucial factors associated with active information seeking. Interventions tailored to meet information needs of these patients may help increase patient participation in healthcare decision making.

A literature review on the impact of concierge medicine services on individual healthcare.

The concept of concierge medicine, established in 1996, stands out for its focus on enhancing accessibility to healthcare providers and customized medical services. It is centered on key principles such as giving priority to quality and individualized care, managing a smaller group of patients to ensure improved service accessibility, and nurturing enhanced continuity in personalized treatment. This review explores various aspects of how concierge medicine impacts healthcare, encompassing areas such as patient satisfaction and involvement, health outcomes, preventive care, healthcare expenses, and ethical and legal considerations. While the affirmative influence of concierge medicine on individual healthcare has been evidenced in terms of patient contentment, active patient participation, preventive care, and early identification of illnesses, there remains a dearth of research data to firmly establish the correlation between concierge medicine and health-related outcomes. Moreover, comprehensive longitudinal studies focusing specifically on the economic and policy implications of concierge medicine are currently lacking. Therefore, further research, particularly in the domain of health economics, is crucial to comprehensively comprehend the implications of this approach. Similarly, there is a necessity for studies that can conduct a comparative analysis between the concierge medicine model and traditional healthcare models, aiming to draw more robust and definitive conclusions.

Enhancing diverse representation in clinical studies: Recommendations from external subject matter experts (SMEs) and patients to optimize protocols, informed consent and study designs.

e23004 Background: Well-characterized disparities in clinical research have disproportionately affected patients of color, particularly in underserved communities. To tackle these barriers, the Roche-Genentech U.S. Advancing Inclusive Research Site Alliance solicited feedback from external SMEs about recommendations for strategies and tactics to increase Black, Hispanic/Latinx and older adult patient clinical research participation. Methods: Feedback was received virtually and via 1:1 interviews from 13 external SMEs defined as investigators, study coordinators or other clinical research roles that engage directly with patients regarding a Phase III small-cell lung cancer protocol as a use case. Two patients provided recommendations for future clinical study protocols and designs. Additionally, multiple healthcare providers from International Society of Geriatric Oncology provided recommendations for the inclusion of older adults in study protocols. A cross-functional, pan-Roche-Genentech team reviewed the feedback and finalized all materials. Results: Six key themes emerged: (a) use lay terms and humanizing language in patient materials; (b) integrate patient lifestyle realities by allowing flexibility in protocol inclusion/exclusion criteria; (c) improve the ease of patient participation and seek only what is clinically necessary for study assessment; (d) incorporate options for sites to enable them to make the right, and fastest, decision(s) for patients without sacrificing safety or data quality; (e) show commitment to diversity in words and actions such as including target enrollment goals in protocols and incorporating patient input on protocols before protocol finalization; (f) include older patients &gt; 70 years. Patient feedback reinforced the SME themes, except for inclusion of older patients. Patients suggested efficiency, clarity and local community realities be factored into future study designs. Some examples are fewer clinic visits, remote visit options, providing patient transportation and food support in connection with protocol-required visits. Patients also highlighted the importance of explaining the probability of side-effects, clinics being present in the community and the need for greater education and awareness regarding barriers to clinical trial enrollment. One patient relayed the importance of early trial education through general physician offices before a trial is actually needed for a given patient. Conclusions: These SME recommendations provide actionable insights to inform protocol design and patient recruitment strategy and tactics to enhance future protocols from an inclusivity-specific lens. Study teams can use these recommendations to address barriers that make enrollment/retention by underrepresented patient populations difficult.

Investigating the Associations between Patient-Reported Quality of Care and Perceived Coercion: A Norwegian Cross-Sectional Study

Patient perspectives on the quality of care received are fundamental to mental health care. This study aimed to investigate the association between patient-reported mental health care quality, perceived coercion, and various demographic, clinical, and ward-related factors. Using a cross-sectional design, data were collected from 169 patients in Norwegian mental health wards using the quality in psychiatric care–inpatient (QPC-IP) instrument and experienced coercion scale (ECS). The analysis revealed a consistent pattern in which patients with higher perceived coercion consistently rated lower quality on all QPC-IP dimensions. The significant findings of the multiple regression models further supported this association. Beyond coercion, the factors influencing quality ratings include self-reported treatment results, participation in treatment planning, and knowledge of complaint procedures. Emphasizing the pivotal role of coercion in enhancing mental health care quality, these findings contribute to a nuanced understanding of patient experiences and underscore the importance of patient participation in mental health care improvement efforts.

Healthcare entrepreneurship: An integrative framework for future research

Healthcare entrepreneurship is of growing interest, but the area of research is not well defined and is disparate across disciplines. We take an integrative approach to examine the similarities and differences between the literature for the two parent domains (healthcare management and entrepreneurship). We present findings from an interdisciplinary four-phase Delphi study and propose a new framework to guide future research. Our proposed healthcare entrepreneurship framework not only reflects variations in key factors, such as actors, activities, processes and outcomes within the parent disciplines, but also suggests gaps, connections and future opportunities for research. Actionable summary and highlightsSince COVID-19, there has been an influx of healthcare entrepreneurial ventures, but, within a volatile market, mixed success. We find that healthcare entrepreneurship is different from work in healthcare or entrepreneurship alone. For healthcare entrepreneurs to achieve their targeted health outcomes as well as their operational and profitability outcomes, all stakeholders need to work together. For the clinician-turned-entrepreneur and the serial entrepreneur now in healthcare, we provide three actionable insights to address some of the practical challenges in healthcare entrepreneurship.1.We advise that venture teams include individuals from both entrepreneurship and healthcare backgrounds to shorten the learning curve, particularly as they develop the evidence base for the offering. Contacting entrepreneurship accelerators or university tech transfer and commercialization offices for which one may have had previous affiliations can be one approach to securing such team members.2.Healthcare entrepreneurs should consider how to include end-user or patient participation to create new healthcare solutions. Working with relevant patient advocacy groups can be one approach and may help to increase the relevance and patient-centeredness of the solution.3.Healthcare entrepreneurs may need to develop new business models and revenue streams. While healthcare is a human right, it requires financing to sustain offerings. One may strengthen one's “business and calling” mindset via joining healthcare entrepreneurship organizations for medical professionals, accelerators, and other local programs that support such entrepreneurial engagement in healthcare.In addition to these insights for healthcare entrepreneurs, we include practical insights for other key actors. Corporations may incentivize partnerships that normalize co-produced innovations. Venture capitalists might develop novel funding mechanisms linked to non-traditional outcomes. Non-profit organizations can serve as interdisciplinary conveners to raise awareness of healthcare entrepreneurship needs. Policy makers might consider ways to create business environments with competitive, yet reasonable, cost and pricing structures.

Is patient participation in hypertension care based on patients' preferences? - A cross-sectional study in primary healthcare.

The purpose of this study was to address the need to improve opportunities for patient participation in their health and health services. This paper reports if and how patients' preferences matched their experiences of participation in treatment for hypertension in primary healthcare, and what factors were linked with having had opportunities for participation that matched one's preferences. A total of 949 adult patients treated for hypertension completed the 4Ps (Patient Preferences for Patient Participation) tool, with which they ranked their preferences for and experiences of patient participation. Descriptive and comparative analyses of 4Ps data were performed to identify patient characteristics associated with preference-based participation.Approximately half of the participants experienced patient participation to the extent that they preferred. Women were more likely to have had less patient participation than their preference compared to men. Women were also more likely to prefer being more engaged in hypertension care than men. There were also marked associations between age and educational level with the extent of participation preferred and experienced, leaving patients younger than or with lower education than the mean in this study with more insufficient conditions for patient participation. There is a lack of concurrence between patients' preferences for, and experiences of, patient participation, especially for women. Further efforts to facilitate person-centred engagement are required, along with research on what strategies can overcome human and organisational barriers. The PERHIT- trial was registered with ClinicalTrials.gov: NCT03554382.