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Background: The National Institute on Aging (NIA), in conjunction with the Department of Health and Human Services as part of the National Alzheimer's Project Act (NAPA), convened a 2020 Dementia Care, Caregiving, and Services Research Summit Virtual Meeting Series. This review article summarizes three areas of emerging science that are likely to grow in importance given advances in measurement, technologies, and diagnostic tests that were presented at the Summit., Results: Dr. Cassel discussed novel ethical considerations that have resulted from scientific advances that have enabled early diagnosis of pre-clinical dementia. Dr. Monin then summarized issues regarding emotional experiences in persons with dementia and their caregivers and care partners, including the protective impact of positive emotion and heterogeneity of differences in emotion by dementia type and individual characteristics that affect emotional processes with disease progression. Finally, Dr. Jared Benge provided an overview of the role of technologies in buffering the impact of cognitive change on real-world functioning and their utility in safety and monitoring of function and treatment adherence, facilitating communication and transportation, and increasing access to specialists in underserved or remote areas., Conclusions: National policy initiatives, supported by strong advocacy and increased federal investments, have accelerated the pace of scientific inquiry and innovation related to dementia care and services but have raised some new concerns regarding ethics, disparities, and attending to individual needs, capabilities, and preferences., (© 2021 The American Geriatrics Society.)

Background: Young people's advisory groups (YPAGs) for research are comprised of children or adolescents who work with researchers to shape different stages of the research process. Their involvement is expected to ensure studies better reflect the preferences and needs of targeted youth populations. However, despite their increasing use in health research, there is little systematic evidence on the methods and impacts associated with YPAGs., Method: To address this gap, we conducted a scoping review of YPAGs in youth-focused health studies. We systematically searched MEDLINE for empirical studies in populations between 12 years and 18 years of age published in 2019. If a potential YPAG was identified, authors were contacted for additional information about the activities and level of involvement of the YPAG., Findings: Of all studies that collected primary data from persons aged 12-18 years, only 21 studies reported using youth advice during their research. This represents less than 1% of all published empirical child and adolescent studies. There was variation in the type of research activity undertaken by YPAGs and their level of involvement. Most studies involved YPAGs in co-production of research design and/or in dissemination activities. The majority of authors that responded were positive about the impact of YPAGs., Interpretation: Recommendations for consistent reporting of YPAG involvement in empirical studies include reporting on the match between YPAG and study populations, frequency/format of meetings, and the nature and level of involvement., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.)

In 2016, AcademyHealth continued its longstanding efforts to understand the health services research (HSR) workforce, to inform its changing needs through the commissioning of several papers and an invitational conference. This paper serves to summarize the commissioned studies that appear in the current issue of this journal., (© Health Research and Educational Trust.)

This paper presents longitudinal data representing federal funding for health services research and discusses the observed trends in the larger context of overall funding for research and development in the United States. By putting into context public and private funding trends, the authors examine how these trends effect the supply and demand of the health services research workforce., (© Health Research and Educational Trust.)

Complex trends in occupancy determined by many influencing factors, clear state-specific differences in imprisonment practices as well as recently implemented statutory alterations to the appropriate paragraphs in criminal law, underline the necessity for qualitative high-grade concomitant research of German forensic commitment; however, neither the structural prerequisites nor an adequate data situation are currently present in order to do justification to this aim. Not even the total number of patients currently accommodated in forensic commitment can be elucidated from the publicized (partial) statistics. This consensus paper, which was formulated by three research institutes active at the state level, describes the limited possibilities for current forensic healthcare research and raises the demand for a nationwide uniform data situation on patients in forensic commitment. Furthermore, how the appropriate elicitation instrument should be organizationally and structurally achieved, is sketched from a scientific perspective. This article aims at initiating a discussion on a sustainable improvement in the prerequisites for healthcare research in German forensic commitment and targets a sensitization of decision makers in politics and administration for this topic.

Background: With massive investment in health-related research, above and beyond investments in the management and delivery of healthcare and public health services, there has been increasing focus on the impact of health research to explore and explain the consequences of these investments and inform strategic planning. Relevance is reflected by increased attention to the usability and impact of health research, with research funders increasingly engaging in relevance assessment as an input to decision processes. Yet, it is unclear whether relevance is a synonym for or predictor of impact, a necessary condition or stage in achieving it, or a distinct aim of the research enterprise. The main aim of this paper is to improve our understanding of research relevance, with specific objectives to (1) unpack research relevance from both theoretical and practical perspectives, and (2) outline key considerations for its assessment., Approach: Our approach involved the scholarly strategy of review and reflection. We prepared a draft paper based on an exploratory review of literature from various fields, and gained from detailed and insightful analysis and critique at a roundtable discussion with a group of key health research stakeholders. We also solicited review and feedback from a small sample of expert reviewers., Conclusions: Research relevance seems increasingly important in justifying research investments and guiding strategic research planning. However, consideration of relevance has been largely tacit in the health research community, often depending on unexplained interpretations of value, fit and potential for impact. While research relevance seems a necessary condition for impact - a process or component of efforts to make rigorous research usable - ultimately, relevance stands apart from research impact. Careful and explicit consideration of research relevance is vital to gauge the overall value and impact of a wide range of individual and collective research efforts and investments. To improve understanding, this paper outlines four key considerations, including how research relevance assessments (1) orientate to, capture and compare research versus non-research sources, (2) consider both instrumental versus non-instrumental uses of research, (3) accommodate dynamic temporal-shifting perspectives on research, and (4) align with an intersubjective understanding of relevance.

Prevention and health promotion have to target children and adolescents. Health reporting significantly contributes to assess the needs in terms of intervention planning in children and adolescents and to plan interventions of the highest priority. In Germany, reporting on children and adolescent's health takes place at federal, federal state and regional levels. Health reporting is based on surveys or monitoring, official statistics or on other data provided by institutions and stakeholders in the health system. The nationally representative Health Behaviour in School-Aged Children (HBSC) survey under the auspices of the WHO - which has been conducted every 4 years since 1982, is a further database in Germany that is representative for the 11-15-year olds girls and boys from general educational schools. In this paper, the HBSC survey will be located within the canon of the German health reporting system. A special emphasis is to describe the potential and limitations of HBSC study for health reporting and to highlight the additional value for health reporting in Germany., (© Georg Thieme Verlag KG Stuttgart · New York.)

Objectives: To understand staff's experiences of acute life threatening events (ALTEs) in a pediatric hospital setting. These data will inform an intervention to equip nurses with clinical and emotional skills for dealing with ALTEs., Method: A mixed design was used in the broader research program; this paper focuses on phenomenon-focused interviews analyzed using interpretative phenomenological analysis (IPA)., Results: Emerging themes included staff's relationships with patients and the impact of personhood on their ability to perform competently in an emergency. More experienced nurses described "automatic" competence generated through increased exposure to ALTEs and were able to recognize "fumbling and shaking" as a normal stress response. Designating a role was significant to staff experience of effectiveness. Key to nurses' learning experience was reflection and identifying experiences as "teachable moments." Findings were considered alongside existing theories of self-efficacy, reflective thought, and advocacy inquiry to create an experiential learning intervention involving a series of clinical and role-related scenarios., Conclusion: The phenomenological work facilitated an in-depth reading of experience. It accentuated the importance of exposure to ALTEs giving nurses experiential knowledge to prepare them for the impact of these events. Challenges included bracketing the personhood of child patients, shifting focus to clinical tasks during the pressured demands of managing an ALTE, normalizing the physiological stress response, and the need for a forum and structure for reflection and learning. An intervention will be designed to provide experiential learning and encourage nurses to realize and benefit from their embodied knowledge., ((c) 2015 APA, all rights reserved).)

The central tasks of health services research include the description and analysis of health care under everyday conditions as well as the development and evaluation of new concepts. As a first step, the reality of the health services' situation should be assessed using representative data. For that, registries, claims data of health insurance funds or observational studies are suitable. To investigate specific patterns or decisions, qualitative methods are of importance. To evaluate the effectiveness of health care concepts or structures, pragmatic randomized, controlled trials are considered to provide the best evidence. In this paper we discuss these questions on the basis of treatment for patients with small renal masses. Although recent guidelines recommend nephron-sparing surgery instead of radical nephrectomy for these patients, international studies suggest that there is a significant underuse of nephron-sparing procedures. However, national data describing the situation in Germany are necessary to analyse reasons and to develop new concepts which subsequently have to be tested in randomized trials. Therefore, the aim of health services research is to create a scientific basis for continuous improvements in health care. Urology needs health services research and we should find ways to overcome barriers to improve quality of care.

Health insurance funds need the results of health services research more than ever due to the socio-legal and socio-economic conditions currently prevailing. This should be possible by taking transparency and data protection into consideration, by cooperating with outside researchers while ensuring flexible use of routine data and if necessary gathering additional data, and by establishing links to epidemiological and registry data. It should become normative to clear the way for health insurance funds to regularly include this type of research in budget planning and to this end provide access to a suitable source of funds. In conclusion, it can simply be stated that it no longer suffices to effectively make a new clinically tested procedure, product, and service available because health insurance funds and their partners must know more precisely what this all accomplishes in practice.

Objectives: The aging of the population creates pressure on the healthcare systems in various ways. A massive increase of chronic disease conditions and age-related illness are predicted as the dominant forces driving the future health care. The objective of this paper is to present future research demands in pervasive healthcare with the goal to meet the healthcare challenges by paving the way for a pervasive, user-centered and preventive healthcare model., Methods: This paper presents recent methodological approaches and proposes future research topics in three areas: i) pervasive, continuous and reliable long-term monitoring systems; ii) prevention through pervasive technology as a key element to maintain lifelong wellness; and iii) design and evaluation methods for ubiquitous, patient-centric technologies., Results: Pervasive technology has been identified as a strong asset for achieving the vision of user-centered preventive healthcare. In order to make this vision a reality, new strategies for design, development and evaluation of technology have to find a common denominator and consequently interoperate. Moreover, the potential of pervasive healthcare technologies offers new opportunities beyond traditional disease treatment and may play a major role in prevention, e.g. motivate healthy behavior and disease prevention throughout all stages of life. In this sense, open challenges in future research have to be addressed such as the variability of health indicators between individuals and the manner in which relevant health indicators are provided to the users in order to maximize their motivation to mitigate or prevent unhealthy behaviors. Additionally, collecting evidence that pervasive technology improves health is seen as one of the toughest challenges. Promising approaches are recently introduced, such as "clinical proof-of-concept" and balanced observational studies., Conclusions: The paper concludes that pervasive healthcare will enable a paradigm shift from the established centralized healthcare model to a pervasive, user-centered and preventive overall lifestyle health management. In order to provide these new opportunities everywhere, anytime and to anyone, future research in the fields of pervasive sensing, pervasive prevention and evaluation of pervasive technology is inevitably needed.

Background: A strong and self confident primary care workforce can deliver the highest quality care and outcomes equitably and cost effectively. To meet the increasing demands being made of it, primary care needs its own thriving research culture and knowledge base., Methods: Review of recent developments supporting primary care clinical research., Results: Primary care research has benefited from a small group of passionate leaders and significant investment in recent decades in some countries. Emerging from this has been innovation in research design and focus, although less is known of the effect on research output., Conclusion: Primary care research is now well placed to lead a broad re-vitalisation of academic medicine, answering questions of relevance to practitioners, patients, communities and Government. Key areas for future primary care research leaders to focus on include exposing undergraduates early to primary care research, integrating this early exposure with doctoral and postdoctoral research career support, further expanding cross disciplinary approaches, and developing useful measures of output for future primary care research investment.

The current overview article highlights specific features of defining chronic illnesses in children with a view on recent methodological developments. Methodological advantages and potential pitfalls of these approaches are discussed. Epidemiological trends are reported taking these definitions and methodological approaches into account. The conceptual interrelationships with other constructs in the area of health service research, for instance quality of life, are demonstrated.

Using data from the German Health Interview and Examination Survey for Children and Adolescents (KiGGS), we studied the association between chronic health conditions and specific health care needs among children and adolescents in Germany. A chronic health condition was defined based on standardized parent questionnaires and computer-assisted parent interviews regarding any lasting illness or health problem, congenital malformation or officially recognized disability. As part of the parent questionnaire, the validated German version of the Children with Special Health Care Needs (CSHCN) screener was used to assess special health care needs. Overall, 38.7% of the study population had at least one chronic health condition, as compared to 73.0% of children and adolescents who were identified as having specific health care needs. Only 25.8% of children and adolescents with chronic health conditions were found to have any special health care needs. However, this proportion varied considerably according to the type of health condition. Overall 3.7% of study participants screened positive for special health care needs, while no specific chronic health condition was reported by their parents. In multiple logistic regression analyses, factors independently associated with the absence of perceived health care needs among children and adolescents with chronic health conditions included female gender, migration background, a lower socioeconomic status, residence in former West Germany, a lower number of concomitant health problems, and the absence of behavioural problems. The identification of special health care needs among children and adolescents without any reported chronic health condition was determined by male gender, having no migration background, and evidence of behavioural problems. Further analyses are necessary to elucidate the relationship between chronic health conditions and health care needs among children and adolescents. These need to focus on specific health conditions and should include additional information on health-related quality of life, health care services use, and psychosocial resources.

Background: In the aftermath of apartheid, South Africa has inherited a fragmented, under-resourced and inequitable public sector mental health service. Attempts are being made to reform mental health services, in keeping with new health policy, which proposes the downscaling of psychiatric institutions and the development of community-based services. This study set out to develop a set of service norms for the care of people with severe psychiatric conditions (SPC) in South Africa, to assist the implementation of the new policy., Methods: A national situation analysis of current public sector mental health services was conducted. A model was developed for estimating the mental health service resource needs of people with SPC. Following consultation with provincial stakeholders, a set of service norms were developed taking into account national indicators from the situation analysis (as a baseline level) and proposals of the model (as a target level)., Results: The study recommends an increase in the number of acute psychiatric beds in general hospitals; development of community-based residential care; redistribution of staff from hospital to community services, particularly in rural areas; and the development of information systems to monitor the transitions to community-based care., Conclusions: The norms proposals presented in this study express mental health service needs in terms of quantifiable service resource and utilisation levels. In doing so, the study attempts to make explicit the assumptions and values on which planning is based.

The appropriateness of the German Official Severe Disability Statistics for determining the amount of care needed by disabled persons is a controversial issue and therefore in the focus of this article. The criteria for determining the care required by disabled persons are pointed out. Data on prevalence and incidence exemplify that Official Severe Disability Statistics is only partially appropriate for assessing future care requirements. The problems become particularly obvious in topics of data collection, data processing and data storage. The deletion of the statistical data at regular intervals of five years makes long term prognosis almost impossible. While the problems concerning data processing and data storage could be solved by few modifications, the improvement of data collection could only be achieved by including and applying the International Classification of Functioning (ICF) of the WHO.

Objective: The authors sought to determine the number of articles on special populations published in this journal between 1950 and 1999 and the specific populations addressed., Methods: The authors reviewed original articles, review articles, brief reports, and columns published in this journal between 1950 and 1999. They tallied articles on the mentally retarded population, women, children and adolescents, elderly persons, gays and lesbians, and parents and families. Articles that addressed patients' communities and villages were also counted, as were articles in the multicultural category-those that addressed more than one racial or ethnic group., Results: Between 1950 and 1999, 578 issues of the journal were published, containing approximately 7,976 articles. A total of 555 of articles (7 percent) addressed special populations. More than two-thirds of these articles addressed the mental health issues of elderly persons (178 articles) and of children and adolescents (200 articles). Thirty-eight of the 555 articles (7 percent) addressed women's issues. A total of 120 articles (22 percent) addressed one or more racial or ethnic group; the largest proportion-36 articles-focused on African Americans, 21 addressed issues of Latinos, and 27 had a multicultural focus. Only two articles published during the 50-year period addressed mental health issues of gays and lesbians, and only five focused on the mentally retarded population., Conclusions: The journal has made continuous progress in increasing the number of articles on special populations. Editorial policies can help encourage submission and publication of articles on these groups.

The Agency for Healthcare Research and Quality (AHRQ) has established the Office of Priority Populations Research and is currently developing a research agenda to improve health care for persons with disability (PWDs). This article describes the background of and potential for the AHRQ disability agenda and some of the challenges ahead and considers future directions for disability-related health services research. Strategies for this agenda might include ensuring the inclusion of PWDs in current and future health care research studies and database development; support for studies and data focusing exclusively on PWDs; and support for studies of the challenges common to all or most of the priority populations.

Catastrophes in the health area are frequent. A template for conduct and reporting of research in disaster responses has recently been published. The WHO Rehabilitation of War Victims Project basically followed these principles in former Yugoslavia to estimate defined needs, prioritise and evaluate methods used. Around 30% of war victims reported to be wounded were found to be in need of physical rehabilitation. Priority was given to the 5% with severe disabilities caused by amputations, spinal cord injuries and traumatic brain injuries. Most of the infrastructure was destroyed and WHO supported a community based rehabilitation approach (CBR). Evaluating this type of service delivery became extremely difficult under present circumstances. Waves of refugees rolled both within the republics and over the borders demonstrating both the needs and problems listed in the template referred to. The CBR service delivery worked out satisfactorily with high patient satisfaction. Limited medical training greatly improved the situation for the personnel. Even in a disaster situation research is needed for proper decision-making and to gain experiences for future aid.

Epidemiologic studies have shown that more than half of mentally ill patients in the United States receive their psychiatric care exclusively in primary care settings. This fraction may be even higher in the military due to concern over possible occupational repercussions resulting from use of specialty psychiatric care and specialist shortages. Collaboration between generalists and mental health care specialists could potentially improve mental health care delivery and reduce psychiatric disability for a large segment of the Army population who have a psychiatric disorder but may not seek specialty care. Collaborative efforts can reinforce military generalists' essential gate-keeping function, thereby decreasing unnecessary medical utilization and health care costs. The authors review the problems associated with mental health care delivery in primary care and provide examples of collaborative models previously studied or currently being explored. A four-part Army Primary Care-Mental Health Services Agenda is proposed, consisting of: (1) coordinated research including primary care-mental health services research and community-based epidemiologic studies; (2) formation of a primary care-mental health services advisory committee for aiding with policy and program development; (3) graduate and continuing medical education in primary care-mental health services emphasizing interdisciplinary collaborative skills; and (4) clinical implementation of feasible collaborative interdisciplinary mental health care models adapted to the range of unique Army primary care settings. The main goal of the Army Primary Care-Mental Health Services Agenda is to improve access to Army mental health care in the most efficacious and cost-effective way and to help minimize the organizational impact of disability related to psychosocial distress.

Over the past decade, researchers have documented the range of needs and devised new methods for increasing our understanding of the homeless severely mentally ill population. Clinicians have developed an appreciation of the difficulty and complexity of effectively treating this population, and policymakers have become increasingly aware of the barriers to developing services and housing. In this article, the progress-to-date in research, the evolution of new service approaches, and the development of federal, state, and local policies to meet the needs of homeless mentally ill individuals are assessed. The many challenges that remain are also considered.

Service needs of families caring for 571 individuals with mental retardation (ages 20 to 24) during the transition into adulthood was described, with an emphasis on the urgency of requests for community state-supported living services. Results of a multiple regression analysis suggested that requests for community living were related more to family stressors than to characteristics of the young adult or participation in regular daytime activities. Most families also requested daytime services and at least one type of social support. The services most requested were those representing normalizing activities, and the major reasons for seeking them involved promoting the young adults' independence.

The treatment histories and current social, financial, and clinical status of 111 chronically mentally ill (CMI) persons over the age of 60 were examined. Information was obtained from Ss, family, mental health records, and mental health professionals familiar with Ss. Psychiatric symptoms were observed in 74% of Ss. Many Ss experienced long periods without acute episodes of illness. Recurring episodes eventually appeared in most Ss, however, and ongoing deficits in daily functioning and social contacts were prototypical. Two thirds of the Ss were living in the community, relying heavily on family contacts; the rest lived primarily in nursing homes (23.4%) or psychiatric hospitals (7.2%). Social support was the best predictor of level of functioning. Findings suggest that failure of CMI elderly to use mental health services is not due to lack of need. Mental health services currently do not appear to be meeting the needs of this population.

The authors of this study examine the demographic and clinical characteristics of hospitalized long-term active psychiatric patients in a metropolitan Canadian region. Their characteristics are compared to other hospitalized patients. Problems inherent in using a cross sectional methodology are reviewed. It was expected that this study's findings will help in identifying the needs of the long-term patients in planning appropriate resources and maintaining them in the community.

A proposal for deinstitutionalization of the mentally retarded in Norway passed the Norwegian Storting in May 1988. The Ministry of Health and Social Affairs has prepared guidelines for planning and implenting this reform. On 1 January 1991 the responsibility for providing the necessary services was transferred to the municipalities. Many problems have to be solved in order to ensure that the life of each mentally retarded person is qualitatively improved after normalization and integration into society. In July 1989 the Ministry of Health and Social Affairs issued a document which assumed that necessary specialists and special services for the mentally retarded already exist, and are being used. Our study has questioned this assumption as being incorrect or incomplete. We interviewed persons in charge of the system of health care in all 19 Norwegian counties. Our conclusions are as follows: The mentally retarded do receive specialist services in various areas of somatic medicine. Their needs as regards psychiatric care are not taken care of by psychiatric specialists in hospitals or at out-patient facilities. Data shows that the system of institutionalized health care for the mentally retarded provides unique services which are best described as systematically applied behaviour analyses. Such special competence is often lacking in the Norwegian health services otherwise. In order to ensure that the mentally retarded will receive the best possible care, this competence must be integrated into the future system of care. It is most importance to consider these problems without delay. This article also discusses organizing special training and treatment for the mentally retarded themselves and special training for the persons providing the care.

This article presents results on the self-perceived and clinically assessed met and unmet need for mental health care as indicated by the Mini Finland Health Survey, an extensive epidemiological study of the Finnish population aged 30 years or over. The prevalence of self-perceived definite or probable need for care was 6.4% in the men and 8.2% in the women. The corresponding clinical assessments were 14.5% in the men and 19.6% in the women. The need for specialist care was 7.5% in the men and 9.6% in the women. The need was greatest in the middle-aged groups. About 60% of persons in need of care were not receiving any treatment. Half of the treatment received was assessed as inadequate. The treatment situation was much better for psychoses than for neuroses, but it varied little between the different parts of the country.