Partners in care.

This festschrift contribution, written for my colleague and mentor John Graham, reflects on geneticist-genetic counselor interactions in clinical care, samples of alternative models of care for pediatric and general genetic counselors, and avenues for expanding access to genetic healthcare services utilizing genetic counselors.

A trajetória da rede de pesquisa em atenção primária à saúde da Abrasco / The trajectory of the research network on primary health care of Abrasco

A Rede de Pesquisa em Atenção Primária à Saúde (Rede APS) vem buscando, nos últimos oito anos, a participação, o acesso e o intercâmbio de conhecimento científico nacional e internacional sobre Atenção Primária à Saúde (APS) entre pesquisadores, gestores e trabalhadores do Sistema Único de Saúde (SUS). Apresenta-se o contexto de seu surgimento, uma análise cronológica de seus principais marcos históricos e sua relação com o desenvolvimento e com a avaliação de políticas brasileiras de atenção básica. Realizou-se uma análise documental de publicações on-line, documentos oficiais e atas de reuniões e entrevistas com personagens ligados à criação e ao desenvolvimento da Rede. A Rede APS participou diretamente da avaliação de políticas centrais à estruturação da atenção básica brasileira, com destaque para o apoio ao Programa Nacional de Melhoria do Acesso e da Qualidade da Atenção Básica, a difusão de pesquisas sobre o Programa Mais Médicos e dos debates críticos sobre a reformulação da Política Nacional de Atenção Básica. A partir de iniciativas como essa e buscando fortalecer o diálogo e o intercâmbio entre gestores, trabalhadores e pesquisadores do SUS, a Rede pode seguir exercendo um papel relevante na estruturação e na avaliação da APS no País.(AU)

Research Network on Primary Health Care (Rede APS) has been seeking for the last 8 years the participation, access and exchange of national and international scientific knowledge on Primary Health Care (APS) among researchers, managers and workers of Unified Health System (SUS). We present the context of its emergence, a chronological analysis of its main historical events and its relationship with the development of policies related to Brazilian APS. We have carried out a documentary analysis of online publications, official documents and meeting reports and interviews with actors related to its creation and development. Rede APS had an important influence on the evaluation of the National Program for Access and Quality Improvement in Primary Health Care (PMAQ-AB), the dissemination of research on the More Doctors Program and in the critical debates about the reformulation of the National Policy of Primary Health Care (PNAB). Based on initiatives such as this one and seeking to strengthen the dialogue and exchange among managers, workers and researchers, this network can continue to play a relevant role in structuring and evaluating APS in Brazil.(AU)

"In Their Own Voice"-Incorporating Underlying Social Determinants into Aboriginal Health Promotion Programs.

Despite growing acknowledgement of the socially determined nature of health disparities among Aboriginal people, how to respond to this within health promotion programs can be challenging. The legacy of Australia's assimilation policies have left profound consequences, including social marginalisation, limited educational opportunities, normalisation of premature death, and entrenched trauma. These social determinants, in conjunction with a reluctance to trust authorities, create barriers to accessing healthcare services for the prevention, treatment, and rehabilitation of chronic disease. The Heart Health program is a culturally sensitive cardiac rehabilitation program run at the local Aboriginal Medical Service in Perth, Western Australia that has since moved beyond cardiac education to provide a holistic approach to chronic disease management. A participatory action research framework was used to explore Heart Health participant and service provider perspectives on the barriers, enablers, and critical success factors to program participation and behaviour change. Thematic analysis of interview transcripts was undertaken, and through yarning (Aboriginal storytelling) sessions, many participants made unprompted reference to the impacts of white settlement, discrimination, and the forced fracturing of Aboriginal families, which have been explored in this paper reiterating the need for a social determinants lens to be taken when planning and implementing Aboriginal health promotion programs.

Alternative Markers of Performance in Simulation: Where We Are and Where We Need To Go.

This article on alternative markers of performance in simulation is the product of a session held during the 2017 Academic Emergency Medicine Consensus Conference "Catalyzing System Change Through Health Care Simulation: Systems, Competency, and Outcomes." There is a dearth of research on the use of performance markers other than checklists, holistic ratings, and behaviorally anchored rating scales in the simulation environment. Through literature review, group discussion, and consultation with experts prior to the conference, the working group defined five topics for discussion: 1) establishing a working definition for alternative markers of performance, 2) defining goals for using alternative performance markers, 3) implications for measurement when using alternative markers, identifying practical concerns related to the use of alternative performance markers, and 5) identifying potential for alternative markers of performance to validate simulation scenarios. Five research propositions also emerged and are summarized.

Where's the LGBT in integrated care research? A systematic review.

INTRODUCTION: Lesbian, gay, bisexual, and transgender (LGBT) individuals experience more negative health outcomes compared with their heterosexual peers. The health disparities are often related to family and social rejection of the LGBT individuals. Integrated care, and Medical Family Therapy in particular, may aid in addressing the systemic nature of the negative health outcomes. METHOD: To better understand the current state of the integrated care literature on addressing the health needs of LGBT individuals, a systematic review of the research literature was conducted from January 2000 to January 2016 for articles including integrated health care interventions for LGBT populations. Independent reviewers coded identified articles. RESULTS: Only 8 research articles met criteria for inclusion out of the 2,553 initially identified articles in the search. Results indicated a lack of integrated care research on health care and health needs of LGBT individuals, and none of the articles addressed the use of family or systemic-level interventions. DISCUSSION: Implications for future research and the need for better education training are discussed. (PsycINFO Database Record

Developing a Research Agenda for Integrating Palliative Care into Critical Care and Pulmonary Practice To Improve Patient and Family Outcomes.

BACKGROUND: Palliative care is a medical specialty and philosophy of care that focuses on reducing suffering among patients with serious illness and their family members, regardless of disease diagnosis or prognosis. As critical illness or moderate to severe pulmonary disease confers significant disease-related symptom burdens, palliative care and palliative care specialists can aid in reducing symptom burden and improving quality of life among these patients and their family members. OBJECTIVE: The objective of this article is to review the existing gaps in evidence for palliative care in pulmonary disease and critical illness and to use an interdisciplinary working group convened by the National Institutes of Health and the National Palliative Care Research Center to develop a research agenda to address these gaps. METHODS: We completed a narrative review of the literature concerning the integration of palliative care into pulmonary and/or critical care. The review was based on recent systematic reviews on these topics as well as a summary of relevant articles identified through hand search. We used this review to identify gaps in current knowledge and develop a research agenda for the future. RESULTS: We identified key areas of need and knowledge gaps that should be addressed to improve palliative care for patients with pulmonary and critical illness. These areas include developing and validating patient- and family-centered outcomes, identifying the key components of palliative care that are effective and cost-effective, developing and evaluating different models of palliative care delivery, and determining the effectiveness and cost-effectiveness of palliative care interventions. CONCLUSIONS: The goal of this research agenda is to encourage researchers, clinicians, healthcare systems, and research funders to identify research that can address these gaps and improve the lives of patients with pulmonary and critical illness and their family members.

[Standard operating procedures (SOPs) for palliative care : Presence and relevance of palliative SOPs within the network of German Comprehensive Cancer Centers (CCCs) funded by the German Cancer Aid]. / Standard Operating Procedures (SOPs) in der Palliativmedizin : Vorhandensein und Relevanz palliativmedizinischer SOPs in den von der Deutschen Krebshilfe geförderten Comprehensive Cancer Centers (CCCs).

BACKGROUND: Standard operating procedures (SOPs) can contribute to the improvement of patient care. OBJECTIVES: Survey the presence and relevance of SOPs for palliative care (PC) within the network of German Comprehensive Cancer Centers (CCCs) funded by the German Cancer Aid. MATERIALS AND METHODS: In a descriptive survey, palliative care services within 15 CCCs funded by the German Cancer Aid were asked to rate availability and thematic relevance of (1) symptom-related, (2) clinical pathways and (3) measures- and processes-oriented SOPs using a structured questionnaire. RESULTS: Pain management SOPs were the most common (n =11; 73 %). The most thematic relevance showed SOPs dedicated to pain management, care in the last days of life and delirium and other neuro-psychiatric diseases (each n =13; 87 %), followed by bowel obstruction, dyspnoea, nausea and palliative sedation (each n =12; 80 %). CONCLUSIONS: There is a wide gap between availability and perceived relevance of palliative care SOPs within the network of German CCCs funded by the German Cancer Aid. It is obvious that there is a need for further development of relevant SOPs in palliative care.

New horizons in the implementation and research of comprehensive geriatric assessment: knowing, doing and the 'know-do' gap.

In this paper, we outline the relationship between the need to put existing applied health research knowledge into practice (the 'know-do gap') and the need to improve the evidence base (the 'know gap') with respect to the healthcare process used for older people with frailty known as comprehensive geriatric assessment (CGA). We explore the reasons for the know-do gap and the principles of how these barriers to implementation might be overcome. We explore how these principles should affect the conduct of applied health research to close the know gap. We propose that impaired flow of knowledge is an important contributory factor in the failure to implement evidence-based practice in CGA; this could be addressed through specific knowledge mobilisation techniques. We describe that implementation failures are also produced by an inadequate evidence base that requires the co-production of research, addressing not only effectiveness but also the feasibility and acceptability of new services, the educational needs of practitioners, the organisational requirements of services, and the contribution made by policy. Only by tackling these issues in concert and appropriate proportion, will the know and know-do gaps for CGA be closed.

Implementing Effective Substance Abuse Treatments in General Medical Settings: Mapping the Research Terrain.

The National Institute on Alcohol Abuse and Alcoholism (NIAAA), National Institute on Drug Abuse (NIDA), and Veterans Health Administration (VHA) share an interest in promoting high quality, rigorous health services research to improve the availability and utilization of evidence-based treatment for substance use disorders (SUD). Recent and continuing changes in the healthcare policy and funding environments prioritize the integration of evidence-based substance abuse treatments into primary care and general medical settings. This area is a prime candidate for implementation research. Recent and ongoing implementation projects funded by these agencies are reviewed. Research in five areas is highlighted: screening and brief intervention for risky drinking; screening and brief intervention for tobacco use; uptake of FDA-approved addiction pharmacotherapies; safe opioid prescribing; and disease management. Gaps in the portfolios, and priorities for future research, are described.

Development of the Quality Improvement Minimum Quality Criteria Set (QI-MQCS): a tool for critical appraisal of quality improvement intervention publications.

OBJECTIVE: Valid, reliable critical appraisal tools advance quality improvement (QI) intervention impacts by helping stakeholders identify higher quality studies. QI approaches are diverse and differ from clinical interventions. Widely used critical appraisal instruments do not take unique QI features into account and existing QI tools (eg, Standards for QI Reporting Excellence) are intended for publication guidance rather than critical appraisal. This study developed and psychometrically tested a critical appraisal instrument, the QI Minimum Quality Criteria Set (QI-MQCS) for assessing QI-specific features of QI publications. METHODS: Approaches to developing the tool and ensuring validity included a literature review, in-person and online survey expert panel input, and application to empirical examples. We investigated psychometric properties in a set of diverse QI publications (N=54) by analysing reliability measures and item endorsement rates and explored sources of disagreement between reviewers. RESULTS: The QI-MQCS includes 16 content domains to evaluate QI intervention publications: Organisational Motivation, Intervention Rationale, Intervention Description, Organisational Characteristics, Implementation, Study Design, Comparator Description, Data Sources, Timing, Adherence/Fidelity, Health Outcomes, Organisational Readiness, Penetration/Reach, Sustainability, Spread and Limitations. Median inter-rater agreement for QI-MQCS items was κ 0.57 (83% agreement). Item statistics indicated sufficient ability to differentiate between publications (median quality criteria met 67%). Internal consistency measures indicated coherence without excessive conceptual overlap (absolute mean interitem correlation=0.19). The critical appraisal instrument is accompanied by a user manual detailing What to consider, Where to look and How to rate. CONCLUSIONS: We developed a ready-to-use, valid and reliable critical appraisal instrument applicable to healthcare QI intervention publications, but recognise scope for continuing refinement.

EUROCOURSE lessons learned from and for population-based cancer registries in Europe and their programme owners: Improving performance by research programming for public health and clinical evaluation.

UNLABELLED: Population-based cancer registries (CRs) in Europe have played a supportive, sometimes guiding, role in describing geographic variation of cancer epidemics and comparisons of oncological practice and preventive interventions since the 1950s for all types of cancer, separate and simultaneously. This paper deals with historical and longitudinal developments of the roughly 160 CRs and their programme owners (POs) that emerged since 1927 and accelerating since the late 70s especially in southern and continental Europe. About 40 million newly diagnosed patients were recorded since the 1950s out of a total of 100 million of whom almost 20 million are still alive and about 10% annually dying from cancer. The perception of unity in diversity and suboptimal comparability in performance and governance of CRs was confirmed in the EUROCOURSE (EUROpe against cancer: Optimisation of the Use of Registries for Scientific Excellence in research) European Research Area (ERA)-net coordination FP7 project of the European Commission (EU) which explored best practices, bottlenecks and future challenges of CRs. Regional oncologic and public health changes but also academic embedding of CRs varied considerably, although Anno 2012 optimal cancer surveillance indeed demanded intensive collaboration with professional and institutional stakeholders in two major areas (public health and clinical research) and five minor overlapping cancer research domains: aetiologic research, mass screening evaluation, quality of care, translational prognostics and survivorship. Each of these domains address specific study questions, mixes of disciplines, methodologies, additional data-sources and funding mechanisms. POs tended to become more and more public health institutes, Health ministries, but also comprehensive cancer centres and cancer societies through more and more funding at project or programme basis. POs were not easy to pin down because of their multiple, sometimes competitive (funding) obligations and increasing complexity of cancer surveillance. But they also rather seemed to need guiding principles for Governance of 'their' CR(s) as well as to appreciate value of collaborative research in Europe and shield CRs against unreasonable data protection in case of linkages. Despite access to specialised care related shortcomings, especially of survival cohort studies, European databases for studies of incidence and survival (such as ACCIS and EUREG on the one hand and EUROCARE and RARECARE on the other hand) have proved to be powerful means for comparative national or regional cancer surveillance. Pooling of comparable data will exhibit much instructive variation in time and place. If POs of CRs would consider multinational European studies of risk and prognosis of cancer more to serve their own regional or national interest, then progress in this field will accelerate and lead to more consistent funding from the EU. The current 20 million cancer survivors and their care providers are likely to appreciate more feedback. CONCLUSION: Most CRs remain uniquely able to report on progress against cancer by studies of variation in incidence (in time and place), detection and survival, referral and treatment patterns and their (side) effects in unselected patients, the latter especially in the (very) elderly. Programming and profiling its multiple and diverse clinical and prevention research is likely to promote involvement of public health and clinical stakeholders with a population-based research interest, increasingly patient groups and licensed 'buyers' of oncologic services.

Calidad Formal de nuestra guía clínica de pancreatitis aguda: evaluación mediante el instrumento agree / Methodological quality of our clinical practice guideline for acute pancreatitis assessed using the agree tool

Introdución: El Instrumento para la Evaluación de Guías de Práctica Clínica (AGREE) ofrece un marco para el examen de la calidad de estas guías. Objetivos. Nos propusimos identificar y evaluar el nivel de calidad de nuestra Guía de Práctica Clínica para la pancreatitis aguda (CPGAP) a través de la herramienta AGREE antes de su aplicación en nuestro medio. Material y Método: Nuestra CPGAP fue evaluada por 5 revisores utilizando la herramienta AGREE adaptada al español. Se examinaron seis áreas de evaluación y se realizó una evaluación global definitiva sobre la base de la puntuación para cada área. Resultados: En la evaluación definitiva nuestra CPGAP se consideró " no recomendada". La guía de práctica clínica fue modificada y después de una segunda evaluación, la guía fue finalmente clasificada como "recomendada" Conclusiones: la evaluación de la calidad de nuestra CPGAP ha puesto de manifiesto un amplio margen de mejora

The Appraisal of Guidelines for Research and Evaluation (AGREE) Instrument evaluates the process of practice guideline development and the quality of reporting. Objective: to evaluate the quality level of our Clinical Practice Guideline for Acute Pancreatitis (CPGAP) assessed using the AGREE tool prior to its application in our setting. Material and methods: Our CPGAP was evaluated by 4 reviewers using the Spanish adapted AGREE tool. Six assessment areas were examined and a definitive global assessment was performed based on score standardization for each area. Results. In the definitive assessment our CPGAP was deemed "non-recommended". The clinical practice Guideline was modified and after a second evaluation, the guide was finally classified as "recommended". Conclusions: the quality assessment of our CPGAP has revealed a wide margin for improvement

Agency for Healthcare Research and Quality Evidence-based Practice Center methods for systematically reviewing complex multicomponent health care interventions.

OBJECTIVES: The purpose of this Agency for Healthcare Research and Quality Evidence-based Practice Center methods white paper was to outline approaches to conducting systematic reviews of complex multicomponent health care interventions. STUDY DESIGN AND SETTING: We performed a literature scan and conducted semistructured interviews with international experts who conduct research or systematic reviews of complex multicomponent interventions (CMCIs) or organizational leaders who implement CMCIs in health care. RESULTS: Challenges identified include lack of consistent terminology for such interventions (eg, complex, multicomponent, multidimensional, multifactorial); a wide range of approaches used to frame the review, from grouping interventions by common features to using more theoretical approaches; decisions regarding whether and how to quantitatively analyze the interventions, from holistic to individual component analytic approaches; and incomplete and inconsistent reporting of elements critical to understanding the success and impact of multicomponent interventions, such as methods used for implementation the context in which interventions are implemented. CONCLUSION: We provide a framework for the spectrum of conceptual and analytic approaches to synthesizing studies of multicomponent interventions and an initial list of critical reporting elements for such studies. This information is intended to help systematic reviewers understand the options and tradeoffs available for such reviews.

The narrated, nonnarrated, and the disnarrated: conceptual tools for analyzing narratives in health services research.

While analyzing the narratives of children receiving pediatric oncology treatment and their parents, we encountered three ways to look at their narratives: what was narrated, nonnarrated, and disnarrated. The narrated refers to the actors (characters) and events (scenes) individuals decided to include in the narration of their experiences, the nonnarrated are everything not included in narration, and the disnarrated are elements that are narrated in the story but did not actually take place. We use our reflection to illustrate how an integrative analysis of these different forms of narration can allow us to produce a holistic interpretation of people's experiences of illness. This approach is still in the early stages of development, but we hope this article can promote a debate in the field and lead to the refinement of an important tool for narrative analysis.

Research and evaluation in the transformation of primary care.

Across the United States, primary care practices are engaged in demonstration projects and quality improvement efforts aimed at integrating behavioral health and primary care. Efforts to make sustainable changes at the frontline of care have identified new research and evaluation needs. These efforts enable clinics and larger health care communities to learn from demonstration projects regarding what works and what does not when integrating mental health, substance use, and primary care under realistic circumstances. To do this, implementers need to measure their successes and failures to inform local improvement processes, including the efforts of those working on integration in separate but similar settings. We review how new research approaches, beyond the contributions of traditional controlled trials, are needed to inform integrated behavioral health. Illustrating with research examples from the field, we describe how research traditions can be extended to meet these new research and learning needs of frontline implementers. We further suggest that a shared language and set of definitions for the field (not just for a particular study) are critical for the aggregation of knowledge and learning across practices and for policymaking and business modeling.

The QUIRO Study (assurance of quality and innovation in radiooncology): methodology, instruments and practices.

PURPOSE: The QUIRO study aimed to establish a secure level of quality and innovation in radiation oncology. Over 6 years, 27 specific surveys were conducted at 24 radiooncological departments. In all, 36 renowned experts from the field of radiation oncology (mostly head physicians and full professors) supported the realization of the study. METHODS: A salient feature of the chosen methodological approach is the "process" as a means of systematizing diversified medical-technical procedures according to standardized criteria. On the one hand, "processes" as a tool of translation are adapted for creating and transforming standards into concrete clinical and medical actions; on the other hand, they provide the basis for standardized instruments and methods to determine the required needs of physicians, staff, and equipment. In the foreground of the collection and measurement of resource requirements were the processes of direct service provision which were subdivided into modules for reasons of clarity and comprehensibility. Overhead tasks (i.e., participation in quality management) were excluded from the main study and examined in a separate survey with appropriate methods. RESULTS: After the exploration of guidelines, tumor- or indication-specific examination and treatment processes were developed in expert workshops. Moreover, those specific modules were defined which characterize these entities and indications in a special degree. Afterwards, these modules were compiled according to their time and resources required in the "reference institution", i.e., in specialized and as competent recognized departments (mostly from the university area), by various suitable survey methods. CONCLUSION: The significance of the QUIRO study and the validity of the results were optimized in a process of constant improvements and comprehensive checks. As a consequence, the QUIRO study yields representative results concerning the resource requirement for specialized, qualitatively and technologically highly sophisticated radiooncologic treatment in Germany.

Pilot and feasibility studies: application in music therapy research.

BACKGROUND: Pilot studies are an important step in the research process and are used to examine research methods and procedures before a larger trial is attempted. Pilot studies provide the researcher an opportunity to determine feasibility of study procedures and generate initial data in previously unstudied areas. OBJECTIVE: The purpose of this article is to provide an overview of the design characteristics of a pilot study, including generation of research questions, corresponding methods for analysis, and reporting of outcomes. METHODS: This article reviews core characteristics of pilot research, addresses misconceptions and misuse of the term pilot, and provides practical guidelines for the design and reporting of pilot studies. CONCLUSIONS: Pilot research offers a unique opportunity for researchers to test study procedures before conducting a larger study. The well-designed pilot study can advance future research by increasing the likelihood of a successful and informative study.

Designing a model for trauma system management using public health approach: the case of Iran.

Trauma is a leading cause of death and disability around the world. Injuries are responsible for about six million deaths annually, of which ninety percent occur in developing countries. In Iran, injuries are the most common cause of death among age groups below fifty. Trauma system development is a systematic and comprehensive approach to injury prevention and treatment whose effectiveness has been proved. The present study aims at designing a trauma system management model as the first step toward trauma system establishment in Iran. In this qualitative research, a conceptual framework was developed based on the public health approach and three well-known trauma system models. We used Benchmarks, Indicators and Scoring (BIS) to analyze the current situation of Iran trauma care system. Then the trauma system management was designed using the policy development phase of public health approach The trauma system management model, validated by a panel of experts, describes lead agency, trauma system plan, policy-making councils, and data-based control according to the four main functions of management: leading, planning, organizing and controlling. This model may be implemented in two phases: the exclusive phase, focusing on resource integration and the inclusive phase, which concentrates on system development. The model could facilitate the development of trauma system in Iran through pilot studies as the assurance phase of public health approach. Furthermore, the model can provide a practical framework for trauma system management at the international level.