This paper responds to the criticism that “observer effects” in ethnographic research necessarily bias and therefore invalidate research findings. Instead of aspiring to distance and detachment, some of the greatest strengths of ethnographic research lie in cultivating close ties with others and collaboratively shaping discourses and practices in the field. Informants’ performances – however staged for or influenced by the observer – often reveal profound truths about social and/or cultural phenomena. To make this case, first we mobilize methodological insights from the field of science studies to illustrate the contingency and partiality of all knowledge and to challenge the notion that ethnography is less objective than other research methods. Second, we draw upon our ethnographic projects to illustrate the rich data that can be obtained from “staged performances” by informants. Finally, by detailing a few examples of questionable behavior on the part of informants, we challenge the fallacy that the presence of ethnographers will cause informants to self-censor.
ethnography; methods; observer effects; Hawthorne effect; reactivity; investigator bias; science studies; science and technology studies; staged performance
Comparative, multi-country research has been underutilised as a means to inform health system development. South-south collaboration has been particularly poor, even though there have been clearly identified benefits of such endeavours. This commentary argues that in a context of HIV/AIDS, the need for regional learning has become even greater. This is because of the regional nature of the problem and the unique challenges that it creates for health systems. We draw on the experience of doing comparative research in South Africa, Tanzania and Zambia, to demonstrate that it can be useful for determining preconditions for the success of health care reforms, for affirming common issues faced by countries in the region, and for developing research capacity. Furthermore, these benefits can be derived by all countries participating in such research, irrespective of differences in capacity or socio-economic development.
It is expected that health information technology (HIT) will deliver a safer, more efficient and effective health care system. The aim of this study was to undertake a qualitative and video-ethnographic examination of the impact of information technologies on work processes in the reception area of a Microbiology Department, to ascertain what changed, how it changed and the impact of the change.
Materials and Methods:
The setting for this study was the microbiology laboratory of a large tertiary hospital in Sydney. The study consisted of qualitative (interview and focus group) data and observation sessions for the period August 2005 to October 2006 along with video footage shot in three sessions covering the original system and the two stages of the Cerner implementation. Data analysis was assisted by NVivo software and process maps were produced from the video footage.
There were two laboratory information systems observed in the video footage with computerized provider order entry introduced four months later. Process maps highlighted the large number of pre data entry steps with the original system whilst the newer system incorporated many of these steps in to the data entry stage. However, any time saved with the new system was offset by the requirement to complete some data entry of patient information not previously required. Other changes noted included the change of responsibilities for the reception staff and the physical changes required to accommodate the increased activity around the data entry area.
Implementing a new HIT is always an exciting time for any environment but ensuring that the implementation goes smoothly and with minimal trouble requires the administrator and their team to plan well in advance for staff training, physical layout and possible staff resource reallocation.
Computerized provider order entry; health informatics; laboratory information systems; microbiology laboratory
Clinical practice research provides a unique opportunity to care for a diverse patient population in various health care system settings. Federal study of Adherence to Medications in the Elderly (FAME) was the first prospective observational and randomized controlled trial to implement effective strategies to enhance medication adherence and health outcomes in older patients using polypharmacy. Ten lessons learned from conducting this adherence intervention trial are described: (1) Link the trial to existing clinical work, (2) Begin with a thorough understanding of medication adherence, (3) Ensure that trial highlights individualized intervention, (4) Tailor inclusion criteria and study duration to target population, (5) Employ a range of outcomes linked to meaningful clinical effects, (6) Win the support of the multidisciplinary team and the administration, (7) Promote team work, (8) Consider the potential limitations, (9) Seize the grant opportunities, and (10) Share the findings.
adherence; pharmacist; intervention; medication
Although empirical and theoretical understanding of processes of implementation in health care is advancing, translation of theory into structured measures that capture the complex interplay between interventions, individuals and context remain limited. This paper aimed to (1) describe the process and outcome of a project to develop a theory-based instrument for measuring implementation processes relating to e-health interventions; and (2) identify key issues and methodological challenges for advancing work in this field.
A 30-item instrument (Technology Adoption Readiness Scale (TARS)) for measuring normalisation processes in the context of e-health service interventions was developed on the basis on Normalization Process Theory (NPT). NPT focuses on how new practices become routinely embedded within social contexts. The instrument was pre-tested in two health care settings in which e-health (electronic facilitation of healthcare decision-making and practice) was used by health care professionals.
The developed instrument was pre-tested in two professional samples (N = 46; N = 231). Ratings of items representing normalisation ‘processes’ were significantly related to staff members’ perceptions of whether or not e-health had become ‘routine’. Key methodological challenges are discussed in relation to: translating multi-component theoretical constructs into simple questions; developing and choosing appropriate outcome measures; conducting multiple-stakeholder assessments; instrument and question framing; and more general issues for instrument development in practice contexts.
To develop theory-derived measures of implementation process for progressing research in this field, four key recommendations are made relating to (1) greater attention to underlying theoretical assumptions and extent of translation work required; (2) the need for appropriate but flexible approaches to outcomes measurement; (3) representation of multiple perspectives and collaborative nature of work; and (4) emphasis on generic measurement approaches that can be flexibly tailored to particular contexts of study.
Exploring barriers to the uptake of research based recommendations into practice is an important part of the development of implementation programmes. Techniques to identify barriers can include use of theory-informed questionnaires and qualitative interviews. Conceptualising and measuring theory-informed factors, and engaging health professionals’ to uncover all potential barriers, can be a difficult task. This paper presents a case study of the process of trying to identify, systematically, the key factors influencing health professionals’ referrals for women diagnosed with mild to moderate postnatal depression for psychological treatment. The paper illustrates how the factors were conceptualised and measured and explores the real world challenges experienced, with implications for future implementation studies.
Theory-informed factors were conceptualised and measured using a questionnaire and interviews. The questionnaire was piloted, before being administered to general practitioners, practice nurses and health visitors working in general practices in one area of the UK NHS. The interviews were conducted with a small sample of general practitioners who had not completed the questionnaire, further exploring factors influencing their referral decisions in the local context.
The response rate to the questionnaire was low (19%), despite selecting the recommendation to target through engagement with local stakeholders and surveying local health professionals, and despite using two reminders, an incentive prize, and phone calls to practice managers to bolster response rates.
Two significant challenges to achieving higher response rates and successfully exploring local context were identified: the difficulties of developing a robust- but feasible- questionnaire to explore theory-informed factors, and targeting recommendations that are important to policy makers, but which health professionals view as unimportant. This case study highlights the “trade-off” between scientifically rigorous collection of data against the pragmatism and flexibility requirements of “real world” implementation. Future implementation studies should explore different ways of identifying factors influencing the adoption of recommendations to bridge this gulf.
Diagnostic analysis; Tailored implementation; Postnatal depression; Mixed methods
Qualitative synthesis has become more commonplace in recent years. Meta-ethnography is one of several methods for synthesising qualitative research and is being used increasingly within health care research. However, many aspects of the steps in the process remain ill-defined.
We utilized the seven stages of the synthesis process to synthesise qualitative research on adherence to tuberculosis treatment. In this paper we discuss the methodological and practical challenges faced; of particular note are the methods used in our synthesis, the additional steps that we found useful in clarifying the process, and the key methodological challenges encountered in implementing the meta-ethnographic approach.
The challenges included shaping an appropriate question for the synthesis; identifying relevant studies; assessing the quality of the studies; and synthesising findings across a very large number of primary studies from different contexts and research traditions. We offer suggestions that may assist in undertaking meta-ethnographies in the future.
Meta-ethnography is a useful method for synthesising qualitative research and for developing models that interpret findings across multiple studies. Despite its growing use in health research, further research is needed to address the wide range of methodological and epistemological questions raised by the approach.
In order to create user-centered design information to guide the development of personal health records (PHRs), 24 patients participated in usability assessments of VA's MyHealtheVet program. Observational videos and efficiency measures were collected among users performing four PHR scenarios: registration and log-in, prescription refill, tracking health, and searching for health information. Twenty-five percent of users successfully completed registration. Individuals preferred prescription numbers over names, sometimes due to privacy concerns. Only efficiency in prescription refills was significantly better than target values. Users wanted to print their information to share with their doctors, and questioned the value of MyHealtheVet search functions over existing online health information. In summary, PHR registration must balance simplicity and security, usability tests guide how PHRs can tailor functions to individual preferences, PHRs add value to users' data by making information more accessible and understandable, and healthcare organizations should build trust for PHR health content.
Personal health record; medical informatics; veterans health; cancer; primary care; information exchange; human factors; computerized provider order entry; health information technology; medication safety
Tools to support clinical or patient decision-making in the treatment/management of a health condition are used in a range of clinical settings for numerous preference-sensitive healthcare decisions. Their impact in clinical practice is largely dependent on their quality across a range of domains. We critically analysed currently available tools to support decision making or patient understanding in the treatment of acute ischaemic stroke with intravenous thrombolysis, as an exemplar to provide clinicians/researchers with practical guidance on development, evaluation and implementation of such tools for other preference-sensitive treatment options/decisions in different clinical contexts.
Tools were identified from bibliographic databases, Internet searches and a survey of UK and North American stroke networks. Two reviewers critically analysed tools to establish: information on benefits/risks of thrombolysis included in tools, and the methods used to convey probabilistic information (verbal descriptors, numerical and graphical); adherence to guidance on presenting outcome probabilities (IPDASi probabilities items) and information content (Picker Institute Checklist); readability (Fog Index); and the extent that tools had comprehensive development processes.
Nine tools of 26 identified included information on a full range of benefits/risks of thrombolysis. Verbal descriptors, frequencies and percentages were used to convey probabilistic information in 20, 19 and 18 tools respectively, whilst nine used graphical methods. Shortcomings in presentation of outcome probabilities (e.g. omitting outcomes without treatment) were identified. Patient information tools had an aggregate median Fog index score of 10. None of the tools had comprehensive development processes.
Tools to support decision making or patient understanding in the treatment of acute stroke with thrombolysis have been sub-optimally developed. Development of tools should utilise mixed methods and strategies to meaningfully involve clinicians, patients and their relatives in an iterative design process; include evidence-based methods to augment interpretability of textual and probabilistic information (e.g. graphical displays showing natural frequencies) on the full range of outcome states associated with available options; and address patients with different levels of health literacy. Implementation of tools will be enhanced when mechanisms are in place to periodically assess the relevance of tools and where necessary, update the mode of delivery, form and information content.
Decision support; Decision aids; Patient information; Shared decision making; Risk communication; Thrombolysis; Acute stroke
Central Queensland University is a well-established distance education provider with an internationally recognized reputation in flexible learning. It has a well-developed infrastructure for the preparation of quality print and multimedia learning materials. A symposium and working conference linking twelve sites, including Auckland NZ via video conferencing, and supported by print based materials and web based conferencing was held during November 1998 with the assistance of Telstra's Conferlink. This paper provides the background, organisation, and evaluation results. Our conclusions are that appropriate use of a combination of print based materials, videoconferencing and a web based classroom works well for the provision of continuing education to health professionals. In addition this symposium was able to reach clinicians and demonstrate the value of informatics to support evidence based practice.
The recent introduction of high throughput sequencing technologies into clinical genetics has made it practical to simultaneously sequence many genes. In contrast, previous technologies limited sequencing based tests to only a handful of genes. While the ability to more accurately diagnose inherited diseases is a great benefit it introduces specific challenges. Interpretation of missense mutations continues to be challenging and the number of variants of uncertain significance continues to grow.
We leveraged the data available at ARUP Laboratories, a major reference laboratory, for the CFTR gene to explore specific challenges related to variant interpretation, including a focus on understanding ethnic-specific variants and an evaluation of existing databases for clinical interpretation of variants. In this study we analyzed 555 patients representing eight different ethnic groups. We observed 184 different variants, most of which were ethnic group specific. Eighty-five percent of these variants were present in the Cystic Fibrosis Mutation Database, whereas the Human Mutation Database and dbSNP/1000 Genomes had far fewer of the observed variants. Finally, 21 of the variants were novel and we report these variants and their clinical classifications.
Based on our analyses of data from six years of CFTR testing at ARUP Laboratories a more comprehensive, clinical grade database is needed for the accurate interpretation of observed variants. Furthermore, there is a particular need for more and better information regarding variants from individuals of non-Caucasian ethnicity.
Cystic fibrosis; CFTR; Novel variants; Next-generation sequencing; Interpretation of variants
To summarize the Canadian health information technology (HIT) policy experience and impart lessons learned to the US as it determines its policy in this area.
Qualitative analysis of interviews with identified key stakeholders followed by an electronic survey.
We conducted semi-structured interviews with 29 key Canadian HIT policy and opinion leaders and used a grounded theory approach to analyze the results. The informant sample was chosen to provide views from different stakeholder groups including national representatives and regional representatives from three Canadian provinces.
Canadian informants believed that much of the current US direction is positive, especially regarding incentives and meaningful use, but that there are key opportunities for the US to emphasize direct engagement with providers, define a clear business case for them, sponsor large scale evaluations to assess HIT impact in a broad array of settings, determine standards but also enable access to resources needed for mid-course corrections of standards when issues are identified, and, finally, leverage implementation of digital imaging systems.
Not all stakeholder groups were included, such as providers or patients. In addition, as in all qualitative research, a selection bias could be present due to the relatively small sample size.
Based on Canadian experience with HIT policy, stakeholders identified as lessons for the US the need to increase direct engagement with providers and the importance of defining the business case for HIT, which can be achieved through large scale evaluations, and of recognizing and leveraging successes as they emerge.
Health information technology; policy; electronic medical records; electronic health records; Canada; health care quality; patient safety; patient-centered care; patient satisfaction; patient safety; decision support; data exchange
The environmental scan is a tool that can be utilized to collect data to design health programs uniquely tailored to the needs of communities. However, it remains relatively undefined, unevaluated and underutilized in the field of public health. While individual studies indicate the utility of the environmental scan for public health, it is difficult to find a theoretical framework or guidelines on how to design, implement or evaluate the process within public health practice. The purpose of this study was to elicit lessons learned to maximize the utility of the environmental scan as a tool for public health. This process occurred through the development and implementation of an environmental scan as part of the needs-assessment phase of a project to increase cancer screening among African Americans in Baltimore, MD. Data collection methods for the environmental scan included a review of community stakeholders, cancer incidence and community assets and liabilities in target communities, focus-group sessions and key informant interviews with service providers. The environmental scan was conducted in 2003 and allowed for rapid acquisition and use of information about events, trends and relationships in the neighborhoods targeted for our project and enabled researchers to move forward with implementing the cancer-screening project. The researchers conclude that the environmental scan has considerable potential to be a creative, responsive, cost-effective and mobilizing tool for public health practice. However, further application and critical review are necessary to make it a more effective public health tool and an established research methodology.
All sectors in health care are being asked to focus on the knowledge-to-practice gap, or knowledge translation, to increase service effectiveness. A social interaction approach to knowledge translation assumes that research evidence becomes integrated with previously held knowledge, and practitioners build on and co-create knowledge through mutual interactions. Knowledge translation strategies for public health have not provided anticipated positive changes in evidence-based practice, possibly due in part to a narrow conceptualization of knowledge. More work is needed to understand the role of tacit knowledge in decision-making and practice. This pilot study examined how health practitioners applied tacit knowledge in public health program planning and implementation.
This study used a narrative approach, where teams from two public health units in Ontario, Canada were conveniently selected. Respondents participated in individual interviews and focus groups at each site. Questions were designed to understand the role of tacit knowledge as it related to the program planning process. Data were analyzed through a combination of content analysis and thematic comparison.
The findings highlighted two major aspects of knowledge that arose: the use of tacit knowledge and the integration of tacit and explicit knowledge. Tacit knowledge included: past experiences, organization-specific knowledge, community contextual knowledge, and the recognition of the tacit knowledge of others. Explicit knowledge included: research literature, the Internet, popular magazines, formal assessments (surveys and interviews), legislation and regulations. Participants sometimes deliberately combined tacit and explicit knowledge sources in planning.
This pilot demonstrated that front-line public health workers draw upon both tacit knowledge and explicit knowledge in their everyday lived reality. Further, tacit knowledge plays an important role in practitioners' interpretation and implementation of explicit research findings. This indicates a need to broaden the scope of knowledge translation to include other forms of knowledge beyond explicit knowledge acquired through research. Strategies that recognize and support the use of tacit knowledge, such as communities of practice or networks, may be important components of a comprehensive approach to knowledge translation. This study provides support for further investigation of the role of tacit knowledge in the planning and delivery of effective public health services.
Although the adoption of health information technology (HIT) has advanced in Canada over the past decade, considerable challenges remain in supporting the development, broad adoption, and effective use of HIT in the public health system. Policy makers and practitioners have long recognized that improvements in HIT infrastructure are necessary to support effective and efficient public health practice. The objective of this study was to identify aspects of health information technology (HIT) policy related to public health in Canada that have succeeded, to identify remaining challenges, and to suggest future directions to improve the adoption and use of HIT in the public health system.
A qualitative case study was performed with 24 key stakeholders representing national and provincial organizations responsible for establishing policy and strategic direction for health information technology.
Identified benefits of HIT in public health included improved communication among jurisdictions, increased awareness of the need for interoperable systems, and improvement in data standardization. Identified barriers included a lack of national vision and leadership, insufficient investment, and poor conceptualization of the priority areas for implementing HIT in public health.
The application of HIT in public health should focus on automating core processes and identifying innovative applications of HIT to advance public health outcomes. The Public Health Agency of Canada should develop the expertise to lead public health HIT policy and should establish a mechanism for coordinating public health stakeholder input on HIT policy.
Health information technology; Electronic infrastructure; Informatics; Surveillance; Public health; Canada
Care coordination is at the forefront of current health reform efforts, yet most electronic health records (EHRs) lack the functionality needed to facilitate and document care coordination activities. The Integrated Care Coordination Information System (ICCIS) was iteratively developed with user input to meet these needs. Following 16 months of system use, ICCIS users and developers were interviewed about their experiences. These interviews, along with quantitative information about system use, were analyzed using a combination of Linstone’s Multiple Perspective approach and the ABC framework to determine lessons learned about novel system creation. Overall, clinicians saw value in specialized health information technology (HIT) tools for care coordination as long as development focuses on providing user-requested functionality that integrates closely with existing HIT systems and workflows. Close integration between novel HIT and EHRs may increase use by relieving the cited fatigues of duplicative data entry, multiple system logins, and potential data inconsistencies.
The UK Department for International Development (DFID) is committed to investing in research to combat poverty, reduce high mortality and morbidity in resource poor contexts and support progress towards meeting the Millennium Development Goals. Research helps us to identify what works, what does not work and how to understand the local context when introducing new ways of working. There is no point doing research if the findings do not get into policy and practice. DFID strongly encourages all research programmes to consider research uptake activities as an integral part of the research.
This special supplement draws on the work of the Sexual Health HIV Evidence into Practice (SHHEP) initiative. SHHEP is a collaboration across four DFID Research Programme Consortia (RPC) that undertake research and action on HIV and Sexual and Reproductive Health in resource poor contexts. Each consortium consists of 5 or more research, advocacy or service provider institutions from the south and the north working together over a five year period on critical areas of sexual and reproductive health. The essence of SHHEP is to share learning on research uptake and research engagement in Sexual and Reproductive Health, including HIV. The group has formulated a range of targeted mechanisms to communicate health research to different audiences and spearhead change, and were finalists for the British Medical Journal 2010 Getting Research into Practice (GRiP) prize.
The papers in this special supplement focus on lesson learning on getting research into policy and practice. They highlight the range of methodologies and approaches researchers and communication specialists have used in different contexts to try to ensure research does not simply gather dust on library shelves but feeds into and is relevant to policy and practice in different contexts (for example South Africa, Swaziland, Tanzania, Uganda, Malawi, Ghana, Bangladesh) and on a diversity of topic areas (Gender based violence, sexualities, orphans and vulnerable children, HIV care and treatment including male circumcision, cotrimoxazole and links with nutrition).
The work reported in this supplement provides examples of approaches that have been tried and from which other researchers can learn. They demonstrate that getting research into policy and practice is complex, dynamic and multi-faceted; and a wide range of context and issue specific conceptual and practical approaches have to be used. I hope that the innovative approaches and promising ways forward, presented in these papers, will inspire and motivate others.
Professor Christopher Whitty
Director Research and Evidence Division
Department for International Development
Dr Sue Kinn
Head of Health Research
Department for International Development
Improving the quality and effectiveness of clinical practice is becoming a key task within all health services. Primary medical care, as organised in the UK is composed of clinicians who work in independent partnerships (general practices) that collaborate with other health care professionals. Although many practices have successfully introduced innovations, there are no organisational development structures in place that support the evolution of primary medical care towards integrated care processes. Providing incentives for attendance at passive educational events and promoting 'teamwork' without first identifying organisational priorities are interventions that have proved to be ineffective at changing clinical processes. A practice and professional development plan feasibility study was evaluated in Wales and provided the experiential basis for a summary of the lessons learnt on how best to guide organisational development systems for primary medical care.
Practice and professional development plans are hybrids produced by the combination of ideas from management (the applied behavioural science of organisational development) and education (self-directed adult learning theories) and, in conceptual terms, address the lack of effectiveness of passive educational strategies by making interventions relevant to identified system wide needs. In the intervention, each practice participated in a series of multidisciplinary workshops (minimum 4) where the process outcome was the production of a practice development plan and a set of personal portfolios, and the final outcome was a realised organisational change.
It was apparent during the project that organisational admission to a process of developmental planning needed to be a stepwise process, where initial interest can lead to a fuller understanding, which subsequently develops into motivation and ownership, sufficient to complete the exercise. The advantages of introducing expert external facilitation were clear: evaluations of internal group processes were possible, strategic issues could be raised and explored and financial probity ensured. These areas are much more difficult to examine when only internal stakeholders are engaged in a planning process.
It is not possible to introduce practice and professional development plans (organisational development and organisational learning projects) in a publicly funded health care system without first addressing existing educational and management structures. Existing systems are based on educational credits for attendance and emerging accountability frameworks (criteria checklists) for clinical governance. Moving to systems that are less summative and more formative, and based on the philosophies of continual quality improvement, require changes to be made in the relevant support systems in order achieve policy proposals.
Few drugs have been labeled for pediatric cardiovascular indications and many children with cardiac disease are prescribed drugs off-label. Recent initiatives have narrowed this gap and as a result there are an increasing number of cardiology trials in the pediatric population. Many studies, however, have either failed to show a dose response in children or have not shown efficacy in children when they have established efficacy in adults. Clinical trials are challenging in children; many factors such as lack of development of a liquid formulation, failure to fully incorporate pharmacokinetic information into trial design, poor dose selection, the lack of clinical equipoise, and the use of difficult surrogate and composite primary endpoints have led to the difficulties and failures observed in several pediatric cardiovascular trials. These lessons learned may help to inform future pediatric clinical trial development.
As the Department of Veterans Affairs (VA) Health Services Research and Development Service’s Quality Enhancement Research Initiative (QUERI) has progressed, health information technology (HIT) has occupied a crucial role in implementation research projects.
We evaluated the role of HIT in VA QUERI implementation research, including HIT use and development, the contributions implementation research has made to HIT development, and HIT-related barriers and facilitators to implementation research.
Key informants from nine disease-specific QUERI Centers.
Documentation analysis of 86 implementation project abstracts followed up by semi-structured interviews with key informants from each of the nine QUERI centers. We used qualitative and descriptive analyses.
We found: (1) HIT provided data and information to facilitate implementation research, (2) implementation research helped to further HIT development in a variety of uses including the development of clinical decision support systems (23 of 86 implementation research projects), and (3) common HIT barriers to implementation research existed but could be overcome by collaborations with clinical and administrative leadership.
Our review of the implementation research progress in the VA revealed interdependency on an HIT infrastructure and research-based development. Collaboration with multiple stakeholders is a key factor in successful use and development of HIT in implementation research efforts and in advancing evidence-based practice.
data; health information technology; quality enhancement research initiative; implementation research; veterans health administration
Evidence-based preventive services offer profound health benefits, yet Americans receive only half of indicated care. A variety of government and specialty society policy initiatives are promoting the adoption of information technologies to engage patients in their care, such as personal health records, but current systems may not utilize the technology's full potential.
Using a previously described model to make information technology more patient-centered, we developed an interactive preventive health record (IPHR) designed to more deeply engage patients in preventive care and health promotion. We recruited 14 primary care practices to promote the IPHR to all adult patients and sought practice and patient input in designing the IPHR to ensure its usability, salience, and generalizability. The input involved patient usability tests, practice workflow observations, learning collaboratives, and patient feedback. Use of the IPHR was measured using practice appointment and IPHR databases.
The IPHR that emerged from this process generates tailored patient recommendations based on guidelines from the U.S. Preventive Services Task Force and other organizations. It extracts clinical data from the practices' electronic medical record and obtains health risk assessment information from patients. Clinical content is translated and explained in lay language. Recommendations review the benefits and uncertainties of services and possible actions for patients and clinicians. Embedded in recommendations are self management tools, risk calculators, decision aids, and community resources - selected to match patient's clinical circumstances. Within six months, practices had encouraged 14.4% of patients to use the IPHR (ranging from 1.5% to 28.3% across the 14 practices). Practices successfully incorporated the IPHR into workflow, using it to prepare patients for visits, augment health behavior counseling, explain test results, automatically issue patient reminders for overdue services, prompt clinicians about needed services, and formulate personalized prevention plans.
The IPHR demonstrates that a patient-centered personal health record that interfaces with the electronic medical record can give patients a high level of individualized guidance and be successfully adopted by busy primary care practices. Further study and refinement are necessary to make information systems even more patient-centered and to demonstrate their impact on care.
Clinicaltrials.gov identifier: NCT00589173
Over the last four decades, the UK has made large investments in healthcare information technology. The authors conducted interviews and reviewed published and unpublished documents to describe national-scale clinical information exchange in England, how it was achieved, and the problems experienced that the USA might avoid. Clinical information exchange in the UK was accomplished by establishing a foundation of policy, infrastructure, and systems of care, by creating and acquiring clinical computing applications and with strong use of financial and clinical incentives. Many software and hardware vendors played a part in this effort; they participated in a national framework created by the NHS in which standards for exchange are specified and their applications designed to make clinical information exchange part of normal practice. Great potential exists for cost reduction, increased safety, and greater patient involvement as a result of clinical information exchange.
Clinical decision support (CDS) delivered in the context of electronic health record systems is receiving increasing attention as a way to help improve clinical practice and health behaviors. Nevertheless, multiple technologies exist to implement and maintain CDS, and there is little consensus on their use. The use of health information technology (HIT) standards for encoding data, representing knowledge and delivering knowledge-based interventions can help facilitate implementation of CDS. However, many standards from numerous standards development organizations (SDOs) exist that are variously incorporated into vendor software, and consensus on the use of these standards is lacking.
Accordingly, the purpose of the presentation is twofold. First, the presenters, who are co-chairs of the Health Level Seven CDS Work Group, will survey the state of the art and science regarding HIT standards that are applicable to CDS. In this analysis of the standards landscape, the presenters will emphasize those standards concerning knowledge representation and delivery as well as convey the latest developments regarding these standards and related efforts to develop new standards. Second, the presenters will show how this work has been translated into software tools and actual implementations that are used to deliver knowledge interventions and to provide CDS.
This paper reports on work carried out to elicit information needs at a trans-disciplinary, nurse-managed health care clinic that serves a medically disadvantaged urban population. The trans-disciplinary model provides a “one-stop shop” for patients who can receive a wide range of services beyond traditional primary care. However, this model of health care presents knowledge sharing challenges because little is known about how data collected from the non-traditional services can be integrated into the traditional electronic medical record (EMR) and shared with other care providers. There is also little known about how health information technology (HIT) can be used to support the workflow in such a practice.
The objective of this case study was to identify the information needs of care providers in order to inform the design of HIT to support knowledge sharing and distributed decision making.
A participatory design approach is presented as a successful technique to specify requirements for HIT applications that can support a trans-disciplinary model of care.
Using this design approach, the researchers identified the information needs of care providers working at the clinic and suggested HIT improvements to integrate non-traditional information into the EMR. These modifications allow knowledge sharing among care providers and support better health decisions.
We have identified information needs of care providers as they are relevant to the design of health information systems. As new technology is designed and integrated into various workflows it is clear that understanding information needs is crucial to acceptance of that technology.
Information needs; participatory design; requirements analysis and design; clinical information technology; nursing workflow; provider-provider communications
This mini-monograph was developed to highlight the experiences of the National Institute of Environmental Health Sciences (NIEHS)/U.S. Environmental Protection Agency (EPA) Centers for Children’s Environmental Health and Disease Prevention Research, focusing particularly on several areas of interest for the National Children’s Study. These include general methodologic issues for conducting longitudinal birth cohort studies and community-based participatory research and for measuring air pollution exposures, pesticide exposures, asthma, and neuro-behavioral toxicity. Rather than a detailed description of the studies in each of the centers, this series of articles is intended to provide information on the practicalities of conducting such intensive studies and the lessons learned. This explication of lessons learned provides an outstanding opportunity for the planners of the National Children’s Study to draw on past experiences that provide information on what has and has not worked when studying diverse multiracial and multi-ethnic groups of children with unique urban and rural exposures. The Children’s Centers have addressed and overcome many hurdles in their efforts to understand the link between environmental exposures and health outcomes as well as interactions between exposures and a variety of social and cultural factors. Some of the major lessons learned include the critical importance of long-term studies for assessing the full range of developmental consequences of environmental exposures, recognition of the unique challenges presented at different life stages for both outcome and exposure measurement, and the importance of ethical issues that must be dealt with in a changing medical and legal environment. It is hoped that these articles will be of value to others who are embarking on studies of children’s environmental health.
asthma; autism; children; environmental health; National Children’s Study; NIEHS/EPA Children’s Centers; obesity; pregnancy