Patient-centered Policy Research Articles

Deontological aspects of doctor’s interaction with vulnerable patient groups

The article highlights the deontological aspects of the interaction between physicians and vulnerable patient groups as a key direction of modern ethical and legal regulation of medical practice. The importance of combining ethical principles and legal norms to foster trustful relationships, ensure quality and equitable medical care regardless of social status, age, or health condition of the patient is emphasized. Particular attention is given to informed consent, which guarantees respect for patient autonomy, and the protection of medical confidentiality, ensuring the privacy and security of personal information. The issue of professional ethics for physicians is examined in the context of preventing discriminatory practices and upholding patient rights, especially for those requiring enhanced protection. The legal regulation of medical activities is presented by the author as a foundation for improving service efficiency and strengthening public trust in healthcare. The author concludes that professional associations and ethical committees play a crucial role in improving medical deontology: they develop standards, monitor compliance, and provide consultations, contributing to the dynamic development of professional culture. The article underscores the need for specialized educational programs for medical professionals to cultivate a profound understanding of ethical and legal aspects, as well as consideration of patients’ cultural, social, and economic characteristics. This is particularly relevant in the context of implementing advanced technologies, such as telemedicine, which enhance access to medical services for patients from remote regions or with limited mobility. Concepts for developing ethical and legal regulation of physician-patient relationships are linked to addressing global challenges, integrating the best global practices, and adapting them to national conditions. In conclusion, the creation of a comprehensive, patient-centered policy for the development of the healthcare system, based on ethics, law, and trust, is recommended to improve the quality of medical care and enhance the authority of the medical profession in society.

Fertility treatment when the prognosis is very poor or futile: an Ethics Committee opinion

The Ethics Committee recommends that invitro fertilization centers develop patient-centered policies regarding requests for futile treatment. In most cases, clear communication can avoid a direct confiict, but clinicians ethically may refuse to provide treatment believed to be futile or to carry a very poor prognosis. In certain instances, clinicians may provide limited treatment, which they judge likely to be futile, but must be vigilant in their presentation of risks, benefits, and alternatives. This version replaces the previously published draft of this name last published in 2019.

Workplace Climate for Sexual and Gender Minorities in Athletic Training.

Sexual and gender minorities (SGMs) are individuals with sexual orientations, gender identities, or expressions (or a combination of these) that differ from cultural norms. Sexual and gender minorities often face workplace discrimination and report decreased physical and emotional well-being from discrimination. To explore the workplace climate of SGM athletic trainers (ATs). Sequential mixed-methods study. Web-based survey and interviews. Criterion sampling of SGM ATs (117 survey participants and 12 interview participants). We modified the LGBTQ Inclusion Assessment and the Organizational Self-Assessment for the survey and developed a semistructured interview script (scale-level content validity index = 0.94). We used means ± SDs, frequencies (%), and the consensual qualitative research tradition to characterize participant responses. Trustworthiness was established through reflexivity (researchers checking bias throughout the research process), member-checking, multianalyst triangulation, and internal and external auditing. Participants indicated their workplace was inclusive (24 [20.5%]), somewhat inclusive (29 [24.8%]), or not inclusive (14 [12.0%]) or did not indicate at all (50 [42.7%]). Respondents most often noted they were unsure of which stage of change their organizations and organizational units were in addressing lesbian, gay, bisexual, transgender, queer, questioning, pansexual, intersex, asexual, 2-spirit, and all within the community of queer and transspectrum identities (LGBTQPIA+) concerns in the workplace as well as specific actions taken for inclusion. Two domains emerged from the interview data: safety and inclusion. The safety domain represented aspects of the workplace climate that made participants feel safe and includes organizational initiatives (12/12), patient-centered policies (7/12), local and federal regulations (7/12), and signaling (12/12). The inclusion domain represented how participants felt a sense of belonging to the organization through their own experience (12/12), through the experiences of their patients (9/12), and through an infrastructure designed for inclusion (12/12). Participants expressed both affirmative and negative feelings of safety and inclusion throughout their responses. Organizations must take both structural and cultural actions to address the concerns of exclusion and lack of safety.

보건의료 빅데이터 정책과 정치 갈등

In relation to healthcare big data policy, various issues and conflicts are arising from the perspective of healthcare information protection and use. In particular, conflicts among political actors intensified as issues related to healthcare big data policy were not resolved even during the National Assembly review process. Therefore, the purpose of this article is to reveal factors causing conflict and consider improvement plans through analysis of the National Assembly legislative process and of the conflict factors in actors related to healthcare big data policy. To this end, we analyze the case of amendments to the Insurance Business Act related to the computerization of medical indemnity insurance claims, which can be defined as a recently enacted healthcare big data policy. As a result of the analysis, issues include the accumulation of sensitive personal medical information by private insurance companies, the use of the accumulated big data for purposes other than the purpose, the problem of medical institutions providing personal medical information such as medical records to third parties, the problem of system legitimacy of the Medical Service Act, Pharmaceutical Affairs Act, and Insurance Business Act, the problem of the patient’s right to request transmission of data other than own, and the problem of the right to self-determination regarding the scope and method of transmission of data were presented. This became a factor in causing conflict, with the government and insurance industry taking a pro stance and the medical community and patient groups taking a strong opposing stance. To resolve issues and conflicts, It is necessary to implement improvement measures such as establishing a governance structure to resolve system legitimacy between laws between standing committees during the review process of the National Assembly, setting patient-centered policy directions, strengthening selfdetermination and control rights over healthcare big data, and setting policy directions that prioritize the protection of healthcare big data.

Exploring the Important Determinants Shaping Treatment Preferences: Qualitative Insights into Breast Cancer Patient Experiences and Perspectives in New Zealand.

Despite the importance of acknowledging patient preferences in treatment decision-making, little is known about the treatment preferences and the factors underlying those preferences of breast cancer patients. This study aims explore patient experience and perspective regarding treatment preferences and identify the important determinants that shape these preferences in the context of New Zealand. Semi-structured online interviews comprised of six focus group discussions and five individual interviews were performed with 26 breast cancer patients. The interviews were recorded, transcribed, and analyzed using the reflexive thematic analysis approach. Four main themes were derived: (1) positive treatment outcomes; (2) the negative impact of treatment-related side effects on quality of life; (3) treatment accessibility, availability, and timeliness; (4) cost of treatment. Patients revealed a strong preference towards treatments that yield longer survival, achieve remission, and prevent cancer recurrence. Additionally, patients favored treatments with minimal side effects that had minimal impact on their quality of life. There was a notable preference for treatments that were easily accessible and available in a timely manner. However, patients faced challenging decisions in balancing the costs of treatments with their benefits, leading to a consistent preference for treatments supported by government funding or medical insurance to alleviate financial burdens. Our study reveals that breast cancer patients in New Zealand have different perceptions and preferences regarding cancer treatment. Patients frequently find themselves making trade-offs among various attributes of a treatment, aligning these decisions with their personal values and beliefs. By considering these preferences and trade-offs in future studies that measure patient preferences, healthcare professionals can enhance their support for patients in making informed choices that align with their values and priorities. Additionally, healthcare policymakers can develop patient-centered policies that cater to the unique needs and preferences of breast cancer patients.

Health Effects of Policing in Hospitals: a Narrative Review.

Law enforcement activity, in the form of outside agencies or hospital security forces, is increasingly common in American healthcare. Little is known about the potential effects of this prevalent, modifiable exposure on hospital staff and patient health. This narrative review characterizes existing evidence on the direct and indirect health effects of law enforcement activity in hospitals. Law enforcement activity in hospitals can affect health outcomes through four mechanisms: (1) physical health effects related to workplace violence, restraint use, excessive force, and weapon use; (2) mental health effects involving perceptions of safety and psychological distress; (3) social effects related to the patient-provider relationship, mistrust, and bias and discrimination; and (4) legal and ethical considerations affecting overall well-being. Unchecked law enforcement activity in hospitals may risk patient physical and mental health, reduce patient trust, result in bias and discrimination, and contribute to legal and ethical rights violations. Importantly, law enforcement activity in hospitals may also contribute to staff perceptions of safety. To fill knowledge gaps on the measurable impact of law enforcement activity in the hospital on staff and patients, hospitals should collect and publicly share robust data on law enforcement activity in their facilities, create and adopt patient-centered policies to ensure safety and protect patient health and privacy, and implement evidence-based interventions that safely reduce law enforcement involvement with patients.

AACR Cancer Progress Report 2021: Discovery Science Driving Clinical Breakthroughs.

AACR Cancer Progress Report 2021: Discovery Science Driving Clinical Breakthroughs.

Rare disease patients’ needs: an up-to-date analysis and future directions

The interest to rare diseases has increased in the recent decades. Legislation seeks to facilitate patients’ access to innovative and effective treatment and to define incentives for pharmaceutical and biotechnology companies to develop new medicines for rare diseases.The current review presents the current knowledge and adopted solutions in the field of rare diseases and discusses the future issues and unmet needs that should be resolved for affected patients and their families. Along with the positive trends in the field of rare diseases, there are still issues related to diagnosis and inequal care for some patients groups that should be solved over the next decade. The innovative digital health methods, which have been improved continuously in the recent years, implementation of improved versions of patient-centered policy plans and programs and investment in advanced therapies could move forward the rare diseases to new horizons giving them the opportunity to overcome the main barriers and challenges in the whole journey of the patients – from diagnosis through treatment to follow-up.

Health Informatics: Use of Internet for Health Information Seeking by Pakistani Chronic Patients

The use of the internet and social networking sites has increased all over the world. It serves as a medium for patients to search for health-related information; to interact with the health care professionals; to access health information online, and to participate in online support groups. The number of patients who seek information on the internet and on social media sites related to their health conditions is increasing day by day. The purpose of the current study was to examine the use of the internet and social networking sites for health-related information seeking. Quantitative research design along with the survey method was used, in which the structured questionnaire was used to collect the data. The population consisted of chronic disease patients, that is, patients with hypertension and diabetes from the Pakistan Institute of Medical Sciences (PIMS), Islamabad. A purposive sampling technique was used for the selection of participants. Data were collected from 200 patients with equal proportionate from hypertension and diabetes patients. The research instrument was developed with the help of the related literature and then validated also. The findings of the study revealed that 45% of the patients indicated that they use the internet daily for health-related information seeking. The results indicate that respondents frequently use internet sources and social networking sites like WhatsApp, YouTube, Facebook, etc. Males and hypertension patients use the internet more significantly as compared to females and diabetic patients. Furthermore, patients often face the challenge of inadequate services (connectivity, network coverage, speed) during internet use. The study is the first of its kind that is reported from Pakistan. The results of the study may help libraries, health professionals, and diabetes-related organizations to design patient-centered policies and information-based services. These institutions may work together to create awareness and to help patients in managing their disease.

Understanding information behavior of diabetic patients: a case of the diabetic's institute Pakistan

PurposePakistan is a developing country where one of the rapidly growing diseases is diabetes. Well-informed diabetic patients are expected to improve the quality of life, self-care behaviors and better cooperation with the health care team. The present study is designed to investigate the information behavior of diabetic patients, and to investigate the role of one institution that is working for diabetes management, treatment, education and counseling in Pakistan i.e. Diabetic's Institute Pakistan (DIP).Design/methodology/approachThe “Embedded Design” based on the mixed methods research approach was adopted to carry out the current research. The study was mainly based on quantitative research design, quantitative data were collected through an adapted questionnaire, the supportive/supplementary qualitative data was collected through an in-depth interview of the medical director, observation record sheets and analysis of the available relevant documents i.e. prescription (prescription notepad with information), brochure and the website was applied.FindingsDiabetic patients want to know about how to control diabetes and mostly rely on humans particularly health professionals and interpersonal networks. The use of books, journals, seminars, libraries is comparatively low. It is an important finding that health-related information is mostly required in national language by Pakistani patients. Lack of computer literacy and information overload were among the barriers that were reported by diabetic patients.Practical implicationsHealth information seeking channels, formats and language preferences should be considered to design patients' cantered information services. Health information service providers i.e. government, health practitioners, health-related institutions and libraries should work in a liaison for creating health awareness. Identified barriers faced by diabetic patients are important to consider for designing health-related information services.Originality/valueInvestigating health information behavior is crucial particularly of the patients from developing countries. The study is first of its kind that is reported from Pakistan. The results of the study may help libraries, health professionals and diabetes-related organizations to design patient's centered policies and information-based services. These institutions may work together to create awareness and to help patients in managing their disease. The study findings are maybe helpful for other developing countries also.

Evaluating Climate between Working Excellence and Organizational Innovation: What Comes First?

This research introduces a new concept of organizational climate, seen as a "mediator", namely a factor liable to produce positive effects on both individual performances and on work processes and relations, thereby creating a favorable relationship between work excellence and organizational innovation. Health systems have been called to promote sustainability, as actors who work for the health and well-being of their patients. Starting from these considerations, this work shows the main results of a longitudinal study conducted in the pediatric department of a large hospital in southern Italy, for a period of three years (May 2014–May 2017). The reference survey was very broad because in the first step of the research a general questionnaire was adopted which included various aspects. Subsequently, the analysis of the influence of the “climate” factor was carried out according to a 3-dimensional scheme: structural, interpersonal/relational and individual. The focus was therefore set—especially in the second survey—on those indicators responding to the objective of the research and that were consistent with the epistemological choice made. The main scope was to verify the conditions according to which the organizational climate can emerge as a novel factor capable of siding with and orienting innovative patient-centered policies of human resources management.

The authority of courage and compassion: Healthcare policy leadership in addressing the kidney disease public health epidemic.

Recent developments in US kidney‐related healthcare policy have made chronic kidney disease (CKD) a societal focus in the United States. In the biggest policy change since the 1972 Social Security Amendments that extended Medicare coverage to patients with kidney failure regardless of age, a 2019 presidential executive order pledged to reduce end‐stage kidney disease, slow CKD progression, increase kidney transplants, and focus on home dialysis care. This manuscript seeks to outline key factors that can enable this milestone moment to evolve a policy framework that improves the health of society while being economically sustainable. Understanding the sociohistorical context of healthcare policy and the related lessons learned demonstrates that policy must take a broader view of the societal and system wide factors that affect chronic illness. Addressing the full breadth of the CKD epidemic requires looking at factors from both inside and outside traditional medical‐pathophysiological environments, including social determinants of health. This more fulsome insight will enable policy to better align the broad range of people and organizations who are working to combat the disease. By creating patient‐centered policy that both evolves with the speed of innovation and addresses root causes of CKD instead of narrowly focusing on symptoms or comorbidities alone, leaders in the public square have an historic opportunity to thoughtfully create the common ground of a lasting policy legacy that improves society's health today and for generations to come.

Fertility treatment when the prognosis is very poor or futile: an Ethics Committee opinion

The Ethics Committee recommends that in vitro fertilization (IVF) centers develop patient-centered policies regarding requests for futile treatment. In most cases, clear communication can avoid a direct conflict, but clinicians ethically may refuse to provide treatment believed to be futile or to carry a very poor prognosis. In certain instances, clinicians may provide limited treatment which they judge likely to be futile, but must be vigilant in their presentation of risks, benefits, and alternatives. This version replaces the previous published draft of this name (Fertil Steril 2012;98:e6-9).

“No more falling through the cracks”: A qualitative study to inform measurement of integration of care of HIV and opioid use disorder

IntroductionIntegration of HIV- and opioid use disorder (OUD)-related care is associated with improved patient outcomes. Our goal was to develop a novel instrument for measuring quality of integration of HIV and OUD-related care that would be applicable across diverse care settings. MethodsGrounded in community-based participatory research principles, we conducted a qualitative study from August through November 2017 to inform modification of the Behavioral Health Integration in Medical Care (BHIMC) instrument, a validated measure of quality of integration of behavioral health in primary care. We conducted semi-structured interviews of patients (n = 22), focus groups with clinical staff (n = 24), and semi-structured interviews of clinic leadership (n = 5) in two urban centers in Connecticut. ResultsWe identified three themes that characterize optimal integration of HIV- and OUD-related care: (1) importance of mitigating mismatches in resources and knowledge, particularly resources to address social risks and knowledge gaps about evidence-based treatments for OUD; (2) need for patient-centered policies and inter-organization communication, and (3) importance of meeting people where they are, geographically and at their stage of change. These themes highlighted aspects of integrated care for HIV and OUD not captured in the original BHIMC. ConclusionsPatients, clinical staff, and organization leadership perceive that addressing social risks, communication across agencies, and meeting patients in their psychosocial and structural context are important for optimizing integration of HIV and OUD-related care. Our proposed, novel instrument is a step towards measuring and improving service delivery locally and nationally for this vulnerable population.

OP120 Rapid Qualitative Reviews: A Scoping Review Of Guidance And Examples

Introduction:Decision-makers are increasingly recognizing the usefulness of qualitative research to inform patient-centered policy decisions, and are accordingly increasingly demanding qualitative evidence as part of health technology assessment (HTA). In the context of tight HTA timelines, a new form of evidence synthesis has emerged—rapid qualitative reviews. The need for rapidity requires either an increase in resources or, more commonly, a compromise in rigor, yet guidance on appropriate compromises for qualitative reviews is lacking.Methods:In order to inform de novo guidance, we conducted a systematic scoping review to identify existing guidance and published examples of rapid qualitative reviews. We searched Medline and CINAHL using medical subject headings and keywords related to “rapid reviews” and “qualitative” research, and screened the 1,771 resultant citations independently in duplicate. Additionally, we searched the grey literature and solicited examples from our contacts and other evidence-synthesis organizations. We summarized included guidance and reviews using the Search, AppraisaL, Synthesis, Analysis (SALSA) framework to identify abbreviations in the review process.Results:We found no guidance documents specific to rapid qualitative reviews. We found one published peer-reviewed rapid qualitative review, and several more (>10; grey literature search in process) through our organizational contacts. While methods to abbreviate the process are poorly reported, an abbreviated literature search (years and databases searched) and the use of a single reviewer appear common.Conclusions:A number of agencies are producing rapid qualitative reviews, however our review identifies the urgent need to develop and explore methods for the synthesis of qualitative research that balance rapidity and rigor.

"No one has yet properly articulated what we are trying to achieve": a discourse analysis of interviews with revalidation policy leaders in the United Kingdom.

To analyze prevailing definitions of revalidation (i.e., a recently instituted system of ongoing review for all physicians in the United Kingdom), the circumstances of their origin, and proposed applications, after a protracted and sometimes difficult decade in development. This was to support a more consensual approach to revalidation policy before its launch in 2012. In 2010 and 2011, the authors carried out a critical discourse analysis of interviews with 31 medical and legal revalidation policy makers. These individuals represented the main stakeholder bodies, including the General Medical Council, Academy of Medical Royal Colleges, British Medical Association, National Health Service Employers, and the departments of health from across the United Kingdom. The authors identified two overarching discourses: regulation and professionalism, held together by patients as "discursive glue." Regulation frames revalidation as a way to identify "bad apples," requiring a summative approach and minimum standards. Professionalism looks to revalidation as a process by which all doctors improve, requiring evolving standards and a developmental model. These two discourses were not mutually exclusive; indeed, most interviewees used them interchangeably. However, they are in some regards at odds. Their coexistence has been supported by a shared discursive formation around patients. Yet the authors found little patient-centered policy in revalidation in its current form. The authors concluded that patients need to be recognized, making them present with an active voice. They also stressed the importance of established and ongoing evaluation of medical regulation as a policy and process.

Patient-centred care: what consumer health organisations say and do

Concepts like patient-centered care and shared decision making are increasingly prominent topics in discourse on quality in healthcare with the growing prevalence of chronic disease. Although patient-centered care has been touted as a way forward, it remains an ambiguous concept with variable application in healthcare. Greater clarity is needed around the concept of patient-centered care alongside a stronger knowledge base on the perspectives of health consumers with complex needs and service providers, including those outside the formal healthcare system, such as consumer health organizations (CHO). This study explored CHO patient-centered policy, related practice, and organizational views on the potential value of pharmacy delivered patient-centered care. In-depth interviews were conducted with 15 organizational representatives until no new themes emerged. Data were concurrently thematically analyzed by three researchers from a public health or pharmacy background. Participants called for a paradigm shift away from the paternalistic biomedical model to shared power that values consumer choice and promotes active engagement in health. There was disparity between articulation of policy and practice, with CHOs often more patient-centered than they claimed to be. Participants described a wealth of innovative and often patient-centered services, and ascribed under-utilization of these resources to limited awareness. Selected CHOs adopted strategies that health professionals can learn from, such as combining multiple elements of patient-centered care and seeking to build consumer capacity to self-manage. Health professional education, current infrastructure and remuneration were cited as barriers to more widespread delivery of patient-centered care. However, participants suggested creative solutions to address selected factors, some specific to pharmacy. Both pharmacy and CHOs are under-utilized healthcare resources and there is potential for synergy between these sectors to promote patient-centered care. Pharmacy could benefit from insight into the CHO perspective of patient-centered care and also increase utilization of CHO services through direct referral.

Moving Forward with the Affordable Care Act: Trends in Self-sustained Obstetric Institution

The economic burden of obstetric care is multifold and mordantly case-specific. Obstetrics is a huge cost to the U.S. healthcare system. Maternal-infant care represents the largest single category of hospital expenditures for most commercial health plans and state Medicaid programs. Reducing these costs provides a major opportunity to reduce insurance premiums for employers and to make Medicaid coverage more affordable. The Patient Protection and Affordable Care Act (2012) encourages the State contracts with Accountable Care Organizations (ACO) by transforming traditional fee-for-service contracts into bundled contracts paying providers and facilities in a single fee. It is then the role of the physician, hospital, or institution to develop strategies to cut costs, improve outcomes, collect, tabulate and report results, and to be competitive within the new reality of the ACO. An attempt is made to develop a theoretical model to assist institutions in moving forward with the Affordable Care Act, by introducing strategies for a self-sustaining obstetric ACO in the following clusters: (1) cost containment, (2) combating stereotype, (3) medical recording, and (4) revenue enhancement. We conclude, that trends in relatively low costs care by both providers and patients are potent with hidden or adverse expenses and remedies. Self-sustained ACO in obstetrics are feasible when stemmed of well-developed patient-centered policies and screening protocols that balance the input–output ratio favoring the patient. Marketing and defense tactics are discussed.

When traditionally inseparable services are separated by technology: the case of patient portal features offered by primary care providers

Health-care services have traditionally been provided and consumed simultaneously, as exemplified by in-person patient visits to primary care providers (PCPs), where clinical assessment and treatment are provided and consumed face-to-face. Technological intermediation is changing this traditional assumption, however, as patient-centric technologies, such as patient portals, are creating service separation opportunities. While service separation facilitated by patient portals may bring welcome changes to access, efficiency, and clinical outcomes, usage of patient portals by health-care consumers remains low. Suboptimal demand-side usage of patient portals, especially at the primary care level, could have significant negative implications for patient-centered policy initiatives predicated on patient empowerment and engagement. This paper contributes to this important policy context by reporting findings from a study designed to assess patient perceptions associated with hypothetical patient portal features offered by PCPs and potential subsequent impacts to PCP loyalty and switching propensity. We find that patient portal features focused on back-office (clinical) self-service capabilities (such viewing health records or summaries from prior visits) are perceived positively by consumers, but, interestingly, clinical digital communication and collaboration features (such as online video consultations with physicians) do not have significant perception impacts. These findings suggest that patient portals may act as a complement to health-care service delivery, while substitution for clinical in-person interactions may not be viewed positively.

Perspectives on quality mental health care from Brazilian and Cape Verdean outpatients: Implications for effective patient-centered policies and models of care

Mental health providers are increasingly coming into contact with large and growing multi-racial/ethnic and immigrant patient populations in the United States. Knowledge of patient perspectives on what constitutes quality mental health care is necessary for these providers. The aim of this study was to identify indicators of quality of mental health care that matter most to two underrepresented immigrant patient groups of Portuguese background: Brazilians and Cape Verdeans. A qualitative design was adopted using focus group discussions. Six focus groups of patients (n=24 Brazilians; n=24 Cape Verdeans) who received outpatient mental health treatment through public safety net clinics in the northeast region of the United States were conducted. The Consensual Qualitative Research analytic method allowed us to identify three quality of care domains: provider performance, aspects of mental health care environment, and effectiveness of mental health care treatment. Provider performance was associated with five categories: relational, communication, linguistic, cultural, and technical competencies. Aspects of mental health care environment were linked to two categories: psychosocial and physical environment. Effectiveness of mental health care treatment was related to two categories: therapeutic relationship and treatment outcomes. Study findings provide useful data for the development of more culturally appropriate and effective patient-centered models and policies in mental health care.