A research and policy agenda for transitions from nursing homes to home

More than 1 million adults make the transition from nursing homes to the community every year, often using formal health services including Medicare Part A skilled home health care. Although the need for discharge planning is well described, and the risks associated with care transitions are increasingly recognized, there is very limited information about the process and outcomes as patients move from nursing home to home. This paper reviews pertinent published data and health services research as background information and outlines a research agenda for studying these important transitions.     

A Research and Policy Agenda for Transitions from Nursing Homes to Home

SUMMARY

More than 1 million adults make the transition from nursing homes to the community every year, often using formal health services including Medicare Part A skilled home health care. Although the need for discharge planning is well described, and the risks associated with care transitions are increasingly recognized, there is very limited information about the process and outcomes as patients move from nursing home to home. This paper reviews pertinent published data and health services research as background information and outlines a research agenda for studying these important transitions.     

Patient-reported measures of psychosocial issues and health behavior should be added to electronic health records

Recent legislation and delivery system reform efforts are greatly expanding the use of electronic health records. For these efforts to reach their full potential, they must actively involve patients and include patient-reported information about such topics as health behavior, preferences, and psychosocial functioning. We offer a plan for including standardized, practical patient-reported measures as part of electronic health records, quality and performance indexes, the primary care medical home, and research collaborations. These measures must meet certain criteria, including being valid, reliable, sensitive to change, and available in multiple languages. Clinicians, patients, and policy makers also must be able to understand the measures and take action based on them. Including more patient-reported items in electronic health records would enhance health, patient-centered care, and the capacity to undertake population-based research.     

American Health Information Management Association. Position Statement. Issue: disclosure of health information

Health information is used for a variety of legitimate purposes, including patient care, quality review, education, research, public health, and legal and financial interests. Regardless of the use or users, patients must be assured that the information they share with healthcare professionals will remain confidential. To protect patients' privacy rights, each healthcare facility must develop policies and procedures for disclosure of health information in accordance with federal and state laws. Careful consideration must be given to any disclosure of health information. Confidential information should be disclosed only as needed for continuing care or upon written authorization by the patient or his legal representative or where such disclosure is authorized by federal or state law, subpoena, or court order.     

Developing a network of community health centers with a common electronic health record: description of the Safety Net West Practice-based Research Network (SNW-PBRN)

In 2001, community health center (CHC) leaders in Oregon established an organization to facilitate the integration of health information technology, including a shared electronic health record (EHR), into safety net clinics. The Oregon Community Health Information Network (shortened to OCHIN as other states joined) became a CHC information technology hub, supporting a network-wide EHR with one master patient index, now linked across >40 safety net organizations serving >900,000 patients with nearly 800,000 distinct CHC visits. Recognizing the potential of OCHIN's multiclinic network and comprehensive EHR database for conducting safety net-based research, OCHIN leaders and local researchers formed the Safety Net West practice-based research network (PBRN). The Safety Net West "community- based laboratory," based at OCHIN, is positioned to become an important resource for many studies including: evaluation of the real-time impact of health care reform on uninsured populations; development of new models of primary care delivery; dissemination and translation of interventions from other EHR-based systems (e.g., Kaiser Permanente) into the community health setting; and analyses of factors influencing disparities in health and health care access. We describe the founding of Safety Net West, its infrastructure development, current projects, and the future goals of this community-based PBRN with a common EHR.     

Defining information need in health – assimilating complex theories derived from information science

Background Key policy drivers worldwide include optimizing patients’ roles in managing their care; focusing services around patients’ needs and preferences; and providing information to support patients’ contributions and choices. The term information need penetrates many policy documents. Information need is espoused as the foundation from which to develop patient‐centred or patient‐led services. Yet there is no clear definition as to what the term means or how patients’ information needs inform and shape information provision and patient care. Theoretical synthesis The assimilation of complex theories originating from information science has much to offer considerations of patient information need within the context of health care. Health‐related research often focuses on the content of information patients prefer, not why they need information. This paper extends and applies knowledge of information behaviour to considerations of information need in health, exposing a working definition for patient information need that reiterates the importance of considering the patient’s goals and understanding the patient’s context/situation. A patient information need is defined as ‘recognition that their knowledge is inadequate to satisfy a goal, within the context/situation that they find themselves at a specific point in the time’. This typifies the key concepts of national/international health policy, the centrality and importance of the patient. Conclusions The proposed definition of patient information need provides a conceptual framework to guide health‐care practitioners on what to consider and why when meeting the information needs of patients in practice. This creates a solid foundation from which to inform future research.     

Fragmentation of patient care between chiropractors and family physicians

BACKGROUND: Most patients using alternative practitioners also receive care from physicians. It is unclear, however, how well alternative practitioners and physicians communicate and coordinate the care of shared patients. OBJECTIVE: To describe the communication and coordination of care for shared patients between chiropractors and family physicians as well as potential barriers to effectively sharing care. DESIGN, SETTING, AND PARTICIPANTS: A cross-sectional national random sample survey of 400 chiropractors and 400 family physicians. MAIN OUTCOME MEASURES: Reports on shared patients including information on adverse events, treatment, and health status. Attitudes toward perceived expertise as well as perceived liability and economic competition involved in sharing care were also assessed. RESULTS: Surveys were completed by 360 (49%) of the 736 eligible practitioners, including 227 chiropractors and 133 family physicians. Although a high degree of interaction occurs between the practitioners, family physicians received information from chiropractors on 26.5% of referred patients while chiropractors received information from family physicians in 25.0% of cases (P = .73). Both groups believed that they did not receive enough information on adverse health outcomes or treatment plans for shared patients. Although neither group was particularly oriented toward wanting to share care, family physicians were much less likely than chiropractors to feel comfortable sharing care (P<.001). CONCLUSIONS: These findings indicate that care is fragmented between chiropractors and the general medical sector, with little information communicated between health care providers on issues with critical importance to quality of care. Further study is needed to identify ways to improve communication and coordination of care.     

Does NHS Direct empower patients?

NHS Direct is a 24h telephone helpline established in England and Wales, UK to offer advice and information for people about health, illness and the National Health Service (NHS) so that they are better able to care for themselves and their families. In 2001/2002 we undertook in-depth home interviews with 60 users of the service in two NHS Direct sites in England. In this paper we consider the extent to which NHS Direct facilitates patient empowerment in terms of helping people to be in control of their health and health care interactions. Our research suggests that NHS Direct facilitates patient empowerment by enabling patients to self care and to access health advice and services. It is also seen to offer the prerequisites for empowerment perceived to be lacking in the wider NHS, including time, respect, listening, support, and information. The service also functions by offering an alternative contact point for people seeking to avoid being labelled 'time wasters' by other busy health care providers. In the context of a wider health service which appears to problematise individuals' ability to make decisions about the appropriateness of seeking health care, NHS Direct legitimises help-seeking actions. Empowerment in the context of NHS Direct has been associated with self care as a way of reducing 'unnecessary' demand on health services. However, health professional and patient perspectives on what is considered necessary demand differ, and in certain contexts, patient empowerment may involve service use as well as self care. Further, our data reveal the context-dependent nature of a concept like empowerment. For example, when people are ill, in pain, or anxious about a loved one, they may value being cared for more than being empowered. Our research suggests that, in addition to its other functions, NHS Direct is also valued as contributing to a sense of being cared for.     

Home artificial nutritional support: the value of the British Artificial Nutrition Survey

The British Artificial Nutrition Survey (BANS) was established in 1996 by the British Association for Enteral and Parenteral Nutrition to audit and research nutritional care in hospital and the community, with the overall aim of improving the quality of nutritional support in patients with disease-related malnutrition. In this article the following information emerging from BANS is presented: growth and prevalence of artificial nutrition (enteral tube feeding and parenteral nutrition), clinical outcome of a wide range of diagnoses receiving artificial nutrition in the community, an economic perspective on home artificial nutrition, and some ethical issues. This information is used to illustrate how BANS can be of value in a wide range of health care activities, including health planning, health economics, clinical practice and patient care.     

The missing link: bridging the patient-provider health information gap

Widespread adoption of information technology is now regarded as a pathway to improving health care and achieving the Institute of Medicine's highly regarded six aims for redesigning care. Achieving these aims requires fresh approaches to health system design, including continuous healing relationships between physicians and patients and provision of tools to help patients be more active participants in their own care. Personal health records (PHRs) might allow patients and providers to develop new ways of collaborating and provide the basis for broader transformation of the health care system. Federal policies can be key catalysts in accelerating PHR development and adoption.     

Social networks – The future for health care delivery

With the rapid growth of online social networking for health, health care systems are experiencing an inescapable increase in complexity. This is not necessarily a drawback; self-organising, adaptive networks could become central to future health care delivery. This paper considers whether social networks composed of patients and their social circles can compete with, or complement, professional networks in assembling health-related information of value for improving health and health care. Using the framework of analysis of a two-sided network – patients and providers – with multiple platforms for interaction, we argue that the structure and dynamics of such a network has implications for future health care. Patients are using social networking to access and contribute health information. Among those living with chronic illness and disability and engaging with social networks, there is considerable expertise in assessing, combining and exploiting information. Social networking is providing a new landscape for patients to assemble health information, relatively free from the constraints of traditional health care. However, health information from social networks currently complements traditional sources rather than substituting for them. Networking among health care provider organisations is enabling greater exploitation of health information for health care planning. The platforms of interaction are also changing. Patient–doctor encounters are now more permeable to influence from social networks and professional networks. Diffuse and temporary platforms of interaction enable discourse between patients and professionals, and include platforms controlled by patients. We argue that social networking has the potential to change patterns of health inequalities and access to health care, alter the stability of health care provision and lead to a reformulation of the role of health professionals. Further research is needed to understand how network structure combined with its dynamics will affect the flow of information and potentially the allocation of health care resources.     

The evidence-based approach in health policy and health care delivery

Evidence-based approaches are prominent on the national and international agendas for health policy and health research. It is unclear what the implications of this approach are for the production and distribution of health in populations, given the notion of multiple determinants in health. It is equally unclear what kind of barriers there are to the adoption of evidence-based approaches in health care practice. This paper sketches some developments in the way in which health policy is informed by the results from health research. It summarises evidence-based approaches in health at three impact levels: intersectoral assessment, national health care policy, and evidence-based medicine in everyday practice. Consensus is growing on the role of broad and specific health determinants, including health care, as well as on priority setting based on the burden of diseases. In spite of methodological constraints, there is a demand for intersectoral assessments, especially in health sector reform. Initiators of policy changes in other sectors may be held responsible for providing the evidence related to health. There are limited possibilities for priority setting at the national health care policy level. Hence, there is a decentralisation of responsibilities for resource use. Health care providers are encouraged to assume agency roles for both patients and society and asked to promote and deliver effective and efficient health care. Governments will have to design a national framework to facilitate their organisation and legal framework to enhance evidence-based health policy. Treatment guidelines supported by evidence on effectiveness and efficiency will be one essential element in this process. With the increasing number of advocates for the enhancement of population health in the policy arenas, evidence-based approaches provide the information and some of the tools to help with priority setting.     

Joint replacement recipients' post-surgery views about health information privacy and registry participation

Patient registries have been demonstrated to improve health care, and represent an important source of data to health researchers and policy-makers. Building on our previous research that tested an explanatory model of health information privacy views with pre-operative joint replacement recipients, in the present study we explored privacy views and willingness to participate in registries among post-operative joint replacement recipients. Post-operative patients were asked to complete a self-administered mailed questionnaire. One hundred and fifty-seven of 173 (91%) eligible individuals were enrolled. Bivariate analyses were conducted using t-tests and one-way ANOVAs. Multivariable analyses were conducted using multiple linear regression. Overall, our previous findings that views about health information privacy are more predictive of potential registry participation than patient characteristics or health care experiences continue to hold true post-surgery. Certain health care experiences were found to play a role in health information privacy concerns, including hip versus knee replacement, primary versus revision surgery, and surgical complications. More variance was explained in post-surgery registry participation views than pre-surgery. In addition, gender differences in R(2) values were smaller post-surgery. However, some aspects of the final models, such as gender as an effect modifier continued in the post-surgery study. Researchers and policy-makers should consider the impact of encounters with the health care system when seeking to understand patients' privacy concerns and willingness to participate in registries.     

Identifying the Gaps Between Biodefense Researchers, Public Health, and Clinical Practice in a Rural Community

ABSTRACT:  Objective: It is essential for health care professionals to be prepared for a bioterrorist attack or other public health emergency. We sought to determine how well biodefense and emerging infectious disease research information was being disseminated to rural health care providers, first responders, and public health officials. Methods: Semi-structured interviews were conducted at a federally funded research institution and a rural community in Washington state with 10 subjects, including researchers, community physicians and other health care providers, first responders, and public health officials. Results: The interviews suggest there is inadequate information dissemination regarding biodefense and emerging infectious disease research and an overall lack of preparedness for a bioterrorist event among rural clinicians and first responders. Additionally, a significant communication gap exists between public health and clinical practice regarding policies for bioterrorism and emerging infectious disease. There was, however, support and understanding for the research enterprise in bioterrorism. Conclusions: Biodefense preparedness and availability of information about emerging infectious diseases continues to be a problem. Methods for information dissemination and the relationships between public health officials and clinicians in rural communities need to be improved.     

Evaluating interventions to promote patient involvement in decision-making: by what criteria should effectiveness be judged?

Interventions to inform patients about health care options and to involve them in decisions about their care are now widely advocated. The question of which criteria should be used to judge the effectiveness of such interventions has, however, received little attention. The provision of research-based information about health care effectiveness to patients and the promotion of greater patient involvement in health care decision-making are likely to have a complex range of effects on: the information provided to patients; patients' acquisition of skills; patients' knowledge and emotions; how decisions are made; the quality of decisions; professional-patient relationships; the use of health care; the health of patients; satisfaction; and the organisation and cost of health services. Opinions about which effects are most important and how they should be measured and valued will be influenced by a variety of factors, including: the rationales and motives underlying interest in patient involvement in decision-making; the forms of patient involvement envisaged; and the types of interventions being considered. In the context of health care systems which aim primarily to improve health status and well-being, health outcomes should take priority over process variables such as decision-making behaviours and patients' knowledge.     

Series: The research agenda for general practice/family medicine and primary health care in Europe. Part 6: reaction on commentaries - how to continue with the Research Agenda?

The Research Agenda should be used as a key reference point to which new research should relate its usefulness and added value. Primary care evolves towards more interdisciplinary care, and research should focus more on the core competency of person-centred team care. There is an urgent need to develop clear definitions and appropriate research instruments for this domain. It will be a particular challenge to study comprehensive approaches in primary-care patients with multi-morbidity. The Research Agenda and the commentaries on it show future directions for primary care research. There are challenges related to a changing society, the shared responsibility and guidance of research by professionals and citizens (patients), and the need to fully integrate research as part of primary healthcare provision. There will be a need for a prioritization of spearheads to guide primary care research for the next decade: translational research, research on equity and health differences, on chronic disease and health systems research. This can not be realized without the development and maintenance of a solid research infrastructure: easily maintained and accessed observational databases, helpful information technology, strategies and techniques for patient involvement, advanced research training possibilities, and the development and validation of appropriate research instruments and outcome measures to capture the different challenges. Worldwide, primary care not only is a priority for health care policy, but it needs to become a research priority as well.     

Health care workers' AIDS attitudes and willingness to provide care--India

Although AIDS is a world-wide pandemic, relatively little has been published on health care workers' attitudes and intentions to provide AIDS care outside of the U.S. This is a critical omission concerning countries such as India which is predicted to have tremendous increases in AIDS cases. Such information is important for health care administrators attempting to cope with disease transmission on a global level. The present research explored Indian health care workers' attitudes, knowledge, and willingness to provide AIDS care. A majority of those in the sample indicated a willingness to care for patients with AIDS. These intentions, however, were not predicted by health care workers' attitudes or knowledge of the disease.     

Health literacy and adolescents: a framework and agenda for future research

Health literacy is an important issue in public health today, especially as patients are taking a greater role in obtaining information about their health. Health literacy is commonly defined as 'the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions'. While there is a large body of literature concerning health literacy and adults, few studies have focused on adolescents. Adolescents may have less interaction with the health care system and lower health care costs than adults, but they are increasingly involved with their health care, especially those with chronic illness. They are frequent users of mass media and other technology to access health information and are a target group for many health-related educational interventions. Adolescents are also at a crucial stage of development, learning skills they will carry with them into adulthood. The goal of this paper is to provide a summary of issues justifying the importance of studying health literacy as it relates to adolescents and to provide a framework and suggestions for future research.     

Designing health information delivery systems for Puerto Rican women.

Although health information is important to the prevention of much illness, the health information needs of Puerto Rican women remain unaddressed, according to the results of this phenomenological study. Through audiotaped interviews, 21 women evaluated various sources of health information. Analysis of the data revealed which health information sources they considered trustworthy and nontrustworthy. Health care providers were found to be one of the least helpful sources, as personal interactions were often hurried and inattentive to women's needs. Yet, the women were able to present a vivid portrait of a culturally sensitive community environment conducive to the presentation of health information. Implications include the importance of including cultural values in any health information setting, as well as the importance of building cultural bridges between health educators and Puerto Rican women. More research is needed to examine community efforts to enhance health information sources for this population of women.     

Women and health statistics: areas of deficient data collection and integration

Improved data on women's health should be based on a definition of health capital for women that takes into account reproductive efficiency and the life experience of women in relation to fertility, general health, employment, and household responsibilities. More information is needed about the conduct of household roles related to investment in health capital for family members. Definitions of health are pragmatic and are related to social systems, including health care providers, for which the definitions serve as signals for certain actions. Women can seek to modify these definitions, which have expressed historical biases about women. Data collection should include information about the extent to which privacy as a dimension of access to health care is achieved. Longitudinal and other approaches to health history data should be explored. Fertility and general health data statistics in federal data systems need to be integrated. Insurance adequacy must be determined in relation to benefit scope, relation to prices, employment requirements, and family contracts. Data that will be helpful in adapting industrial environment to health goals are needed. Provider characteristics relevant to women as patients and workers, and qualities of residential environments pertaining to health, need to be studied. Future research should include evaluation of women's health capital and opportunities for programmatic investment to improve household efficiency in conduct of health-related affairs.