Cultural challenges to engaging patients in shared decision making

ObjectiveEngaging patients in their health care through shared decision-making is a priority embraced by several national and international groups. Missing from these initiatives is an understanding of the challenges involved in engaging patients from diverse backgrounds in shared decision-making. In this commentary, we summarize some of the challenges and pose points for consideration regarding how to move toward more culturally appropriate shared decision-making.DiscussionThe past decade has seen repeated calls for health policies, research projects and interventions that more actively include patients in decision making. Yet research has shown that patients from different racial/ethnic and cultural backgrounds appraise their decision making process less positively than do white, U.S.-born patients who are the current demographic majority.ConclusionWhile preliminary conceptual frameworks have been proposed for considering the role of race/ethnicity and culture in healthcare utilization, we maintain that more foundational and empirical work is necessary. We offer recommendations for how to best involve patients early in treatment and how to maximize decision making in the way most meaningful to patients. Innovative and sustained efforts are needed to educate and train providers to communicate effectively in engaging patients in informed, shared decision-making and to provide culturally competent health care.     

A conceptual framework for understanding iatrophobia

ObjectiveIatrophobia – fear of doctors, medical care, or the medical care system – is common among patients and can negatively impact their health-seeking behaviors and relationships with health care professionals. Despite this, academic literature on iatrophobia often fails to explore its nuanced causes.MethodsWe establish a conceptual framework of iatrophobia, categorizing sources of fear that may create barriers to accessing medical care, and recommend a research agenda to address this phenomenon and understand its role in medical care.ResultsThe framework includes three categories of determinants of iatrophobia: patient fear of illness and the medical exam, patient fear of physician reaction, and patient fear related to barriers to care. These categories represent influences from individual to more system-related factors associated with the physician-patient relationship. Research examining iatrophobia should focus on understanding its prevalence, how patients cope with their fear, discussing iatrophobia in the physician-patient encounter, the sociopolitical contribution to iatrophobia, and how iatrophobia can be reduced.ConclusionsIatrophobia can be categorized into three primary domains, but it remains poorly understood.Practice ImplicationsA more thorough understanding of iatrophobia will help to contextualize its role amid other barriers to care and patient health outcomes.     

A systematic review of communication about Complementary and Integrative Health (CIH) in global biomedical settings

ObjectivesA systematic review to analyze communication rates of complementary and integrative health (CIH) and analyze how communication terms, such as “disclosure,” are measured and operationalized.MethodsWe searched seven databases for studies published between 2010 and 2018 with quantitative measurements of patients’ communication of CIH to a biomedical clinician. We analyzed communication terms used to describe patients reporting CIH usage. We also examined the conceptual and operational definitions of CIH provided and whether those terms were explicitly operationalized. We aggregated the percentage, rate, or ratio of CIH users that communicated about CIH with their clinicians by disease type and geographical region.Results7882 studies were screened and 89 included in the review. Studies used a wide range of conceptual and operational definitions for CIH, as well as 23 different terms to report communication related to reporting CIH usage. Usage varied by disease type and geographical region.ConclusionsStudies of CIH and CIH communication may measure different kinds of social and communicative phenomena, which makes comparison across international studies challenging.Practice ImplicationsFuture studies should employ standardized, replicable measures for defining CIH and for reporting CIH communication. Clinicians can incorporate questions about prior, current, and future CIH use during the medical visit.     

Involving patients in undergraduate health professions education: What’s in it for them?

ObjectivesPatients have become more involved in research, policy, and health professions education. They are involved in teaching students competencies required for person-centred care, but patient benefits have not received proper attention. This exploratory study identifies how patient involvement in health professions education help patients to practice self-management and shared decision-making.MethodsIndividual interviews were conducted with patients (hereafter ‘experts by experience’) (N = 11) who participated in the Patient As a Person Module, organised for students of health professions in The Netherlands. Additionally, one of their healthcare professionals (N = 10) and family members (N = 9) were interviewed. Directed content analysis was used.ResultsParticipants reported that sharing lived experiences helped experts by experience to reflect on their preferences regarding health and healthcare, accept their changed selves, and obtain a renewed sense of purpose. They reported gaining insight into the perspectives of healthcare professionals, which yielded more equal healthcare professional-patient relationships.ConclusionsSharing their lived experiences with health and health care with students could help patients in practising effective self-management and participate in shared decision-making.Practice implicationsApproaching patient involvement in health professions education from both the perspectives of students and experts by experience, as opposed to students alone, optimises its societal impact.     

Comparing process evaluations of motivational interviewing interventions for managing health conditions and health promotions: A scoping review

ObjectiveTo explore how process evaluations were conducted alongside randomised controlled trials (RCTs) involving motivational interviewing (MI) as an intervention to manage health conditions.MethodsA scoping review was conducted. We searched 7 databases (to May 2021) for studies that incorporated at least one aspect of process evaluation of RCTs using MI to manage a health condition. Two reviewers screened the studies for eligibility and extracted data according to Medical Research Council framework.ResultsOf the 123 studies included, 85% lacked a theoretical framework for process evaluation. Most studies reported fidelity, but dose was underreported. Sixty-five studies reported mechanism of impact, but only twelve used participant experiences to understand how MI works. Only thirty used true mediation analysis. Context (n = 33) was the least reported aspect of process evaluation.ConclusionProcess evaluations of MI to manage health conditions often consist of fragmented reports of implementation, mechanisms, and context. Using validated measures of fidelity, reporting dose, and using mediation analysis alongside qualitative exploration of participant and stakeholder insights will improve our understanding of how MI works.Practice implicationsRobust and comprehensive process evaluations will inform MI researchers to design more rigorous trials and for clinicians to implement more effective interventions for their clients.     

Factors affecting cancer patients’ electronic communication with providers: Implications for COVID-19 induced transitions to telehealth

ObjectiveBecause of the pandemic, electronic communication between patients and clinicians has taken on increasing significance in the delivery of cancer care. The study explored personal, clinical, and technology factors predicting cancer survivors’ electronic communication with clinicians.MethodsData for this investigation came from the Health Information National Trends Survey (HINTS5, Cycle 2) that included 593 respondents who previously or currently had cancer. Multivariate regression analyses were used to predict electronic communication with clinicians. Predictors included demographic variables and health status, technology use (online health information-seeking behavior, tracking of health-related data such as using a Fitbit), and quality of past communication experiences with clinicians.ResultsIn this pre COVID-19 sample, 42 % respondents (N = 252) did not engage in any type of electronic communication (e.g., emailing, texting, data sharing) with providers. In multivariate analyses, predictors of more electronic communication with clinicians included frequency of seeking health-related information online (ß = .267, p < .001) and better communication experiences with clinicians (ß = .028, p = .034), while no demographic variable showed significance. The technology use variables (online health information seeking, health tracking) were significantly higher predictors of electronic communication with clinicians (ΔR² = .142, p < .001) than was past experiences with clinicians (ΔR² = .029, p = .016).ConclusionsAccess and past experience with interactive media technologies are strong predictors of cancer patients’ electronic communication than with clinicians. Adoption of telehealth technology likely depends as much on patients’ relationships with technology as it does their relationships with clinicians.Practice implicationsSince Covid-19, cancer care providers have turned to telehealth provide patients with needed cancer care services. Enhancing patients’ digital competence and experience with electronic communication will help them more easily navigate telehealth care. Providers can leverage their relationship with patients to facilitate more effective use of telehealth services.     

PGx in psychiatry: Patients’ knowledge,interest, and uncertainty management preferences in the context of pharmacogenomic testing

ObjectivePharmacogenomic testing (PGx) is expanding into psychiatric care. PGx could potentially offer a unique benefit to psychiatric patients, providing information about patients’ reaction to medications that could reduce the time and financial burdens of drug optimization. The aims of this study were to: (1) examine psychiatry patients’ familiarity and interest in PGx, and (2) explore how Uncertainty Management Theory relates to PGx testing in psychiatry.MethodWe surveyed psychiatric patients, measuring their PGx familiarity and interest, attitudes toward PGx testing, and preference for managing illness uncertainty.ResultsWe analyzed data from 598 patients. Patients’ familiarity of PGx was low, but interest was high. Thirty percent of patients were familiar with the test from communication with their healthcare provider or their own online health information seeking. A preference for seeking information was a significant positive predictor of testing interest (p < .001).ConclusionPsychiatric patients were interested in PGx testing, regardless of their uncertainty management preferences.Practice implicationsThis study is one of the first to examine psychiatric patients’ perspectives on PGx testing in mental health care. Our findings show that psychiatric patients are interested in the test and are familiar enough with PGx to be included in future research on the topic.     

Diversity improves performance and outcomes

BackgroundResearch on the effects of increasing workplace diversity has grown substantially. Unfortunately, little is focused on the healthcare industry, leaving organizations to make decisions based on conflicting findings regarding the association of diversity with quality and financial outcomes. To help improve the evidence-based research, this umbrella review summarizes diversity research specific to healthcare. We also look at studies focused on professional skills relevant to healthcare. The goal is to assess the association between diversity, innovation, patient health outcomes, and financial performance.MethodsMedical and business research indices were searched for diversity studies published since 1999. Only meta-analyses and large-scale studies relating diversity to a financial or quality outcome were included. The research also had to include the healthcare industry or involve a related skill, such as innovation, communication and risk assessment.ResultsMost of the sixteen reviews matching inclusion criteria demonstrated positive associations between diversity, quality and financial performance. Healthcare studies showed patients generally fare better when care was provided by more diverse teams. Professional skills-focused studies generally find improvements to innovation, team communications and improved risk assessment. Financial performance also improved with increased diversity. A diversity-friendly environment was often identified as a key to avoiding frictions that come with change.ConclusionsDiversity can help organizations improve both patient care quality and financial results. Return on investments in diversity can be maximized when guided deliberately by existing evidence. Future studies set in the healthcare industry, will help leaders better estimate diversity-related benefits in the context of improved health outcomes, productivity and revenue streams, as well as the most efficient paths to achieve these goals.     

How does patient engagement work in a real-world setting? Recommendations,caveats, and challenges from a psychosocial perspective

ObjectiveTo propose a possible taxonomy for diverse stakeholders outside the healthcare communication field and to promote meaningful patient engagement in healthcare settings. Moreover, to support them in making more coherent policy, strategy, and practice decisions to enhance patient participation in their healthcare systems.DiscussionThis paper is part of the pEACH Position Papers Series and provides a critical and experience-based reflection on patient engagement in different healthcare-related settings. We propose a framework that operationalises actionable patient engagement at the micro-meso-macro levels. Finally, the authors will highlight some “points of attention” that need to be addressed to support patient engagement implementation in healthcare organisations.Conclusion and practice implicationsUnderstanding and systematising the established meanings of patient engagement through a psychosocial lens is critical to addressing the following questions: "how can various health care organisations ensure that authentic patient engagement informs decision-making and strategies", "how can these organisations build authentic connections with their patients", and importantly, "how can patients gain valuable and reliable insights through patient engagement"? Answering these questions can enable key stakeholders to make informed decisions that ensure the quality and effectiveness of patient engagement initiatives in different healthcare settings.     

Managing uncertainty and responding to difficult emotions: Cancer patients’ perspectives on clinician response during the COVID-19 pandemic

ObjectivePatients undergoing cancer treatment during the COVID-19 pandemic have experienced stress and uncertainty with respect to disruptions in cancer care and COVID-19 related risks. We examined whether clinicians’ responsiveness to patients’ uncertainty and difficult emotions were associated with better health and well-being.MethodsPatients were recruited from cancer support communities and a market research firm. Respondents assessed clinicians communication that addressed uncertainty and difficult emotions. Health status measures included mental and physical health, coping during the pandemic, and psychological distress.Results317 respondents participated in the study. Patients’ perceptions of their clinicians responsiveness to patient uncertainty and negative emotions were associated with better mental health, physical health, coping, and less psychological distress (all p-values <0.001). Respondents with greater self-efficacy and social support also reported better health.ConclusionEven when controlling for patients’ personal and health-related characteristics, clinicians’ communication addressing patients’ uncertainty and difficult emotions predicted better health, better coping, and less psychological distress. Access to social support and self-efficacy also were associated with better health status.Practice implicationsClinicians’ communication focused on helping with uncertainty and difficult emotions is important to cancer patients, especially during the pandemic. Clinicians should also direct patients to resources for social support and patient empowerment.     

Development and classification of a robust inventory of near real-time outcome measurements for assessing information technology interventions in health care

ObjectiveTo develop and classify an inventory of near real-time outcome measures for assessing information technology (IT) interventions in health care and assess their relevance as perceived by experts in the field.Materials and methodsTo verify the robustness and coverage of a previously published inventory of measures and taxonomy, we conducted semi-structured interviews with clinical and administrative leaders from a large care delivery system to collect suggestions of outcome measures that can be calculated with data available in electronic format for near real-time monitoring of EHR implementations. We combined these measures with the most commonly reported in the literature. We then conducted two online surveys with subject-matter experts to collect their perceptions of the relevance of the measures, and identify other potentially relevant measures.ResultsWith input from experienced health care leaders and informaticists, we developed an inventory of 102 outcome measures. These measures were classified into a taxonomy of commonly used measures around the categories of quality, productivity, and safety. Safety measures were rated as most relevant by subject-matter experts, especially those measuring medication processes. Clinician satisfaction and measures assessing mean time to complete tasks and time spent on electronic documentation were also rated as highly relevant.DiscussionBy expanding the coverage of our previously published inventory and taxonomy, we expect to help providers, health IT vendors and researchers to more effectively and consistently monitor the impact of EHR implementations in near real-time, and report more standardized outcomes in future studies. We identified several measures not commonly assessed by previous studies of IT implementations, especially those of safety and productivity, which deserve more attention from the broader informatics community.ConclusionOur inventory of measures and taxonomy will help researchers identify gaps in their measurement approaches and report more standardized measurements of IT interventions that could be shared among researchers, hopefully facilitating comparison across future studies and increasing our understanding of the impact of IT interventions in health care.     

The Learning Healthcare System: Where are we now? A systematic review

Background and objectiveThe Learning Healthcare System paradigm has attracted the attention of researchers worldwide. The great potential originating from high-scale health data reuse and the inclusion of patient perspectives into care models promises personalized care, lower costs of health services and minimized consumption of resources. The aim of this review is to summarize the attempts to adopt the novel paradigm, putting emphasis on implementations and evaluating the impact on current medical practices.MethodPRISMA methodology was followed for structuring the review process. Three major research databases (PubMed, IEEE Xplore and ACM DL) were queried with the predefined search terms “learning healthcare” and “learning health”. Publications containing specific theoretical or empirical results were considered.ResultsThree hundred and fifty-eight publications were identified; however, only 32 met the inclusion criteria. Nineteen papers were characterized as theoretical contributions, while the rest presented empirical achievements. Only one paper described the initial estimates of impact and economy.DiscussionIndividualistic communication of studies ignoring popular frameworks for assessing and reporting research achievements prevents the systematic generation of knowledge. Evaluating the impact of the Learning Healthcare System instances where it is implemented could work as a catalyst in reaching higher acceptance and adoption of the proposed ideas by healthcare worldwide; however, it mostly remains described in theory.ConclusionsThe review demonstrated the interest of researchers in exploring the Learning Healthcare System ideas. However, it also revealed minimal focus on evaluating the impact of the novel paradigm on both healthcare service delivery and patient outcome.     

Women's status within the household as a determinant of maternal health care use in Nigeria

BackgroundAlthough gender inequality is often cited as a barrier to improving maternal health in sub-saharan Africa, there is lack of empirical data on how women''s socio-cultural characteristics may influence use of health services in Nigeria.ObjectiveTo describe how women''s position in the household affects receipt of maternity care services.MethodsSecondary data analysis of 10,052 and 4,590 currently married women aged 15 to 49 years from the 2008 Nigerian DHS who receive skilled antenatal and delivery care at least till pregnancy was done.ResultsReceipt of skilled delivery care was by 37.9% while, natal care was by 98.4%. Education, residence and wealth index all significantly influenced receipt of maternal health care. Women who were involved in decision making on their own health (aOR=1.97; 95%CI=1.88–2.06) and were employed throughout the year (aOR=1.11; 95%CI=1.01–1.23) were more likely to receive skilled antenatal care, while those who justified physical intimate partner violence were less likely to receive both skilled antenatal care (aOR=0.92; 95%CI=0.85–0.98) and delivery services (aOR 0.54; 95% CI 0.33–0.87).ConclusionInterventions aimed at improving maternal care should promote women empowerment (decision making, self worth, educational and economic) and should involve partners.     

User profiles and personas in the design and development of consumer health technologies

Background“The graying of the globe” has resulted in exponential rise in health care expenses, over-worked health care professionals and a growing patient base suffering from multiple chronic diseases, one of which is diabetes. Consumer health technologies (CHT) are considered important catalysts for empowering health care consumers to take a proactive role in managing their health and related costs. Adoption rate and usability of such devices among the aging is far from being satisfactory. Past studies noted the motivation for adoption by the aging is dependent on the suitability/relevance, perceived usability and anticipated benefits associated with usage of technological innovation. Traditional information technology (IT) development adopts a systematic approach without necessarily using a specific user model that personalizes the system to the aging user groups. The aging patient population has unique needs arising from progressive deterioration in both physiological and psychological abilities. These needs are often ignored in the design, development, trial and adoption of consumer health products resulting in low adoption and usage.ObjectivesThe main objective of this research is to investigate the user-centered design (UCD), specifically user profiles and personas, as methodological tools to inform the design and development of CHT devices for an aging population. The adoption of user profile and persona has not received much attention in health care informatics research and, in particular, research involving CHT. Our work begins to fill this void in three ways. We (1) illuminate the process of developing CHT user profiles and personas for a Chinese elder population with a demanding health care needs, i.e., self-management of chronic diabetes, with the hope that the resulting profiles and personas may be used as foundational material for informing the design, development and evaluation of CHT in other similar contexts; (2) call attention to how to further enhance and complement traditional user profile and persona techniques for CHT design by integrating cognitive structures and present behavior that drive health care thinking, future behavior and demand; (3) show how the profiles and personas can be used to inform requirements, design and implementation decisions for a technology aimed at facilitating CHT adoption and diffusion for the elderly.MethodologyTo exemplify process and application, we use an action-research methodology, where user profiles and personas of an aging patient population were developed. The resultant profiles and personas were leveraged to improve the design, development and implementation plans of a smart phone application to assist chronically ill aging Chinese diabetic population capable of disease self-management.ResultsThe results from the study show that user profile and persona can be a valuable methodological approach in capturing the conceptual model of the aging and informing the design and development decisions of CHT. The demonstration of techniques used in this study can serve as a guideline to CHT developers in bringing conceptual user modeling into the design of software interfaces targeted for users with specific health care needs. Specifically, the study provides guidance on the creation and use of profiles and personas to tap into the conceptual models of the targeted elderly population reflecting their preferences, capabilities and attitudes towards using technology in self-management care in general and the smart phone diabetes management application in particular. Insight into the mental model of the aging group has been shown to inform later stages of UCD development (e.g., the creation of prototypes and usability testing) as well as implementation and adoption strategies. The World Health Organization (WHO) predicts that by 2025, 80% of all new cases of diabetes are expected to appear in the developing countries. In fact, the number of diabetic patients in China is estimated to rise to 42.3 million in 2030 from 20.8 million in 2000. Thus, we investigate the Chinese aging population in order to demonstrate the process of developing and using user profile and persona. We hope that the resultant conceptual model of the Chinese aging diabetic population can be used in future research to guide CHT designers interested in designing health care devices for this vulnerable user group.