Children with Fetal Alcohol Spectrum Disorders (FASD) may have significant neurobehavioural problems persisting into adulthood. Early diagnosis may decrease the risk of adverse life outcomes. However, little is known about effective interventions for children with FASD. Our aim is to conduct a systematic review of the literature to identify and evaluate the evidence for pharmacological and non-pharmacological interventions for children with FASD.We did an electronic search of the Cochrane Library, MEDLINE, EMBASE, PsychINFO, CINAHL and ERIC for clinical studies , quasi RCT, controlled trials and pre- and post-intervention studies) which evaluated pharmacological, behavioural, speech therapy, occupational therapy, physiotherapy, psychosocial and educational interventions and early intervention programs. Participants were aged under 18 years with a diagnosis of a FASD. Selection of studies for inclusion and assessment of study quality was undertaken independently by two reviewers. Meta-analysis was not possible due to diversity in the interventions and outcome measures.Twelve studies met the inclusion criteria. Methodological weaknesses were common, including small sample sizes; inadequate study design and short term follow up. Pharmacological interventions, evaluated in two studies (both RCT) showed some benefit from stimulant medications. Educational and learning strategies (three RCT) were evaluated in seven studies. There was some evidence to suggest that virtual reality training, cognitive control therapy, language and literacy therapy, mathematics intervention and rehearsal training for memory may be beneficial strategies. Three studies evaluating social communication and behavioural strategies (two RCT) suggested that social skills training may improve social skills and behaviour at home and Attention Process Training may improve attention.There is limited good quality evidence for specific interventions for managing FASD, however seven randomized controlled trials that address specific functional deficits of children with FASD are underway or recently completed. Children exposed to alcohol in utero may have significant neurobehavioural problems persisting into adulthood [in utero; Partial FAS; and Alcohol Related Neurodevelopmental Disorder (ARND), the diagnosis of which requires confirmation of maternal alcohol exposure and neurodevelopmental problems not otherwise explained. Also included are Alcohol Related Birth Defects (ARBD), the diagnosis of which require confirmation of maternal alcohol exposure and specific birth defects attributable to alcohol.[Alcohol exposure dulthood  and/or ddulthood ,3. This  alcohol. Adverse  alcohol.Early diagnosis of FAS and FAE is associated with decreased risk of adverse outcomes, perhaps Our aim was to systematically review the medical literature to identify and evaluate the evidence for efficacy of pharmacological and non-pharmacological interventions for children with FASD.We sought RCTs evaluating pharmacological and non-pharmacological interventions for children with FASD aged under 18 years. Non-pharmacological interventions of interest included behavioural, speech, occupational and physio therapies, early intervention programmes, and psychosocial and educational interventions. Because published reviews indicated that there were unlikely to be many RCT, we also included other study types that included a control group  and cohort studies with pre- and post-intervention measurements. Control interventions could include no treatment, waiting list, usual therapy or placebo.Outcomes of interest included measures of physical and mental health, developmental status, cognitive status, quality of life, educational attainment, employment, contact with the law and substance abuse, whether measured during and immediately after the intervention and/or in adolescence and adulthood.We searched MEDLINE (1950 – January 2009), EMBASE (1980 – January 2009), CINAHL (1982 – January 2009), PsycINFO (1865 – January 2009), Cochrane Central Register Controlled Trials  and ERIC (1966 – January 2009), with no language restrictions, using terms for Fetal Alcohol Spectrum Disorders and therapies including: Fetal Alcohol Syndrome; Early Intervention; Drug Therapy; Allied Health Occupations; Occupational Therapy; Physical Therapy Modalities; Exercise Therapy; Behavior Therapy; and Social Support. Search terms were adapted for individual databases. Additional studies were sought by contacting individuals undertaking research on FASD and from bibliographies of identified papers, review articles and FASD conference proceedings.Two reviewers independently screened the titles and abstracts of articles identified in the search and reviewed the full text of articles that appeared to fulfill the inclusion criteria. We developed a form to standardize extraction of data regarding study design, participants, study setting, interventions and outcomes. Two independent reviewers extracted the data and assessed study quality including blinding of outcome assessment, use of standardized measures, follow-up and, for RCT, method of randomization, allocation concealment and intention-to-treat analysis (ITT). Disagreements were resolved by a third reviewer.We intended to undertake meta-analyses but the data were unsuitable due to the small number of studies and the disparate interventions and outcome measures.We identified 6263 studies using our search strategy Figure . After eOesterheld et al randomlySnyder et al randomlyAdnams et al reported two pilot studies evaluating educational interventions. -16 In thin utero were randomly selected from 193 children in an epidemiologic study, and were assigned to a control group. The randomization method was not described, and selection bias cannot be excluded. Two children in the FASD control group who did not meet diagnostic criteria were excluded from analysis. Two children from the FASD intervention group and two from the alcohol unexposed control group were lost to follow up. The language and literacy intervention focussed on phonological awareness and other pre- and early literacy skills needed for reading and spelling. It was administered for half an hour, twice a week, by a speech therapist over a 9 month period for a total of 38 hours of intervention. Children were evaluated with a range of measures prior to the intervention and immediately post-intervention. The intervention led to improvements in reading, spelling and some pre-literacy domains in the FASD intervention group compared to the FASD control group. Both FASD groups continued to score lower than the alcohol unexposed control group.The 2007 Adnams et al study,16 recruColes et al randomlyKable et al randomlyLoomes et al evaluateMeyer evaluatePadgett et al  evaluateO'Connor et al recruiteTimler undertooVernescu randomlyIn this systematic review, we found limited evidence for specific interventions for children with FASD. There is evidence from RCT that a language and literacy intervention improves reading spelling and pre-literacy skills (n = 65); a mathematics intervention increases mathematics knowledge (n = 61); Attention Process Training may improve attention and non-verbal reasoning (n = 20); stimulant medication may decrease hyperactivity and impulsivity but not does improve attention (n = 16); Virtual Reality Training may facilitate learning (n = 16); and Cognitive Control Therapy in the classroom may improve behaviour (n = 10). There is evidence from a quasi-RCT of effectiveness of social skills training in improving social skills and behaviour at home but not at school (n = 100).A strength of this systematic review is that it provides a comprehensive overview of the evidence for specific interventions for children with FASD. We searched six databases and the search was not limited by language. However, the databases included have a bias towards English language publications. A potential limitation is that we did not hand search journals. During the latter stages of our review process, a systematic review on a similar topic was published, however it differs from ours, having restricted studies to RCTs thus only including three studies. By incluThe greatest limitation of our review lies in the quality of the studies available for inclusion. Significant methodological problems limit the extent to which conclusions can be drawn. Study design is often inadequate. Pre- and post-assessments and retrospective reviews are frequently used rather than RCT and in the RCT we identified, the method of randomization, allocation concealment, and blinding are rarely described. Very small sample sizes are common. Studies by O'Connor et al, Adnams ein utero but without the physical features of FAS may also have cognitive impairment, although this is usually less severe than in children with FAS.[in utero.[Interventions for FASD should target the specific clinical and neuropsychological deficits seen most commonly in these conditions. The neurobehavioural profile of children with FASD may include low IQ, howeverwith FAS. Other cowith FAS. learningwith FAS. languagewith FAS. motor abwith FAS.,30 visuowith FAS. non-verbwith FAS. planningwith FAS. reactionwith FAS. adaptivewith FAS.,33,34 anwith FAS. Many of in utero.The pattern of hyperactivity/inattention in children with a FASD diagnosis may differ from that seen in children with familial ADHD, as may their response to stimulant medications. The lackOne of the barriers to health professionals making a diagnosis of a FASD is their perception of a lack of effective interventions.,36 NeverThe authors declare that they have no competing interests.EP designed the study, conducted the search, reviewed the studies and drafted the manuscript. BRJ conducted the search, reviewed the studies and edited the manuscript. CB and EJE conceived the study, participated in the design of the study and co-wrote and edited the manuscript. All authors read and approved the final version of the manuscript.The pre-publication history for this paper can be accessed here:


Integrated personal health records (PHRs) offer significant potential to stimulate transformational changes in health care delivery and self-care by patients. In 2006, an invitational roundtable sponsored by Kaiser Permanente Institute, the American Medical Informatics Association, and the Agency for Healthcare Research and Quality was held to identify the transformative potential of PHRs, as well as barriers to realizing this potential and a framework for action to move them closer to the health care mainstream. This paper highlights and builds on the insights shared during the roundtable.While there is a spectrum of dominant PHR models, , the authors state that only the integrated model has true transformative potential to strengthen consumers' ability to manage their own health care. Integrated PHRs improve the quality, completeness, depth, and accessibility of health information provided by patients; enable facile communication between patients and providers; provide access to health knowledge for patients; ensure portability of medical records and other personal health information; and incorporate auto-population of content. Numerous factors impede widespread adoption of integrated PHRs: obstacles in the health care system/culture; issues of consumer confidence and trust; lack of technical standards for interoperability; lack of HIT infrastructure; the digital divide; uncertain value realization/ROI; and uncertain market demand. Recent efforts have led to progress on standards for integrated PHRs, and government agencies and private companies are offering different models to consumers, but substantial obstacles remain to be addressed. Immediate steps to advance integrated PHRs should include sharing existing knowledge and expanding knowledge about them, building on existing efforts, and continuing dialogue among public and private sector stakeholders.Integrated PHRs promote active, ongoing patient collaboration in care delivery and decision making. With some exceptions, however, the integrated PHR model is still a theoretical framework for consumer-centric health care. The authors pose questions that need to be answered so that the field can move forward to realize the potential of integrated PHRs. How can integrated PHRs be moved from concept to practical application? Would a coordinating body expedite this progress? How can existing initiatives and policy levers serve as catalysts to advance integrated PHRs? Personal health records (PHRs) are consumer-centric tools that can strengthen consumers' ability to actively manage their own health and health care . Althougpersonal health records (PHRs) arose from low-technology solutions that individuals and families have used for many decades because they needed one place to record and access their complete medical history. Paper-based documents including clinical notes accumulated from various care providers, laboratory reports, and health histories are often compiled by health care consumers in envelopes, loose-leaf binders or shoe boxes. Generations of parents have used baby books to collect basic information on post-natal care, child development, medical consultations, and immunizations. Health information wallet cards are used by consumers to carry emergency medical contacts, blood type, and allergies. MedicAlert™ bracelets have become one of the most widespread ways to communicate basic health data to health professionals who might become involved with the patient needing emergency care.The concept of a PHR is not new . What weBasic electronic personal health records emerged as people began collecting personal health information and entering it into computer-based, word processing templates or spreadsheet applications. These records are initiated and maintained by individuals, often to help them manage a chronic illness; they can include lifelong personal health information and can be used with or without the participation of health care providers.As mass storage devices such as CD ROMs, smart cards, or USB flash drives became readily available they were utilized for maintaining personal health information. Early web-based PHRs include online emergency medical records that made manually-entered diagnoses, medications, and allergy information available to emergency room clinicians .In today's parlance, a PHR typically refers to a computer-based record – either a standalone product  or one that is integrated with the provider's electronic health record (EHR). While the uptake of standalone PHRs has been slow, a growing number of patients actively use integrated PHRs .Today, PHRs command attention on the national and international health policy landscape ,10. RecoIn September 2006, the Kaiser Permanente Institute for Health Policy (Kaiser), the American Medical Informatics Association (AMIA), the Robert Wood Johnson Foundation (RWJF) and the Agency for Healthcare Research and Quality (AHRQ) convened a two-day invitational roundtable entitled "Personal Health Records and Electronic Health Records: Navigating the Intersection" with support from the Kaiser Permanente Foundation and the Robert Wood Johnson Foundation. The roundtable had three goals:▪ Identify the transformative potential of integrated PHRs.▪ Identify barriers to realizing this potential.▪ Identify a framework for action to move integrated PHRs closer to the health care mainstream.This paper highlights and builds on the issues and insights shared in the roundtable discussion. Time constraints did not allow roundtable participants to reach consensus on specific recommendations. Thus, the conclusions in this paper reflect the views of the authors only and do not necessarily represent the collective thinking of roundtable participants. These conclusions are offered as a contribution to the dialogue that is deepening our understanding of the transformative potential that can be realized when PHRs integrate with other health information systems and communication technologies.Since the roundtable in September 2006, a range of PHR initiatives has advanced in planning and implementation; several of these are described later in this paper. Nevertheless, PHRs are still largely infant technologies and further dialogue, informed by research on pivotal issues, is needed to achieve steady progress towards integrated PHRs in this decade and the next.Standalone or free-standing PHRs are often PC-based and require manual data entry to populate and update the record. Standalone PHRs help consumers organize and store medical data, can be accessed anytime and anywhere, and enable information sharing with providers. The most common free-standing PHRs are either paper-based, personal computer-based, or enabled by an Internet application. Some free-standing PHRs enable consumers to copy data onto convenient, portable storage devices. Some online variations of this model are offered by commercial organizations that derive revenue from sponsor advertising or data mining, while others charge a fee for maintaining information on a secure web page. The content of the free-standing PHR is typically created by and is under the physical control of the patient. Key limiting factors of the free-standing PHR are that manual data entry is typically required to populate and update the record [Today, there is a spectrum of dominant PHR models ,14. Stane record  and pracIntegrated, interconnected, or networked web-based PHRs can be populated with patient information from a variety of sources, including EHRs, insurance claims, pharmacy data, and home diagnostics and can provide consumers as well as providers with a more complete view of relevant health information. The consumer is an important contributor to the interconnected PHR content and is typically allowed to enter information into selected areas of the record. Integrated PHRs provide access for consumers to provider-based records; may eliminate manual re-entry of data; serve as a patient-provider communication channel; may reduce medical errors, eliminate duplication, and improve quality; enhance efficiency and convenience with online transaction tools; and promote a more comprehensive view of health status and health care activity. Some interconnected PHRs are offered in connection with services related to a specific health condition or disease and feature patient data integrated with personalized health advice and guidance [guidance .tethered PHRs) are a limited form of the integrated model that connect with a single provider-based EHR system or other institutional database, offering patients access to parts of their electronic health records via web portals. Additional functionality is often available with these systems, including the ability to e-mail medical providers, make follow-up appointments and renew prescriptions. These PHRs are a patient-facing extension of the clinician-controlled EHR, accessed via the Internet [Institution-specific, web-based PHRs , or correct errors or incomplete information.▪ Adding information of primary interest to patients rather than providers, such as patient-relevant decision support.▪ Drug interaction checking (when a complete medication profile is available).▪ Home monitoring with recording or tele-reporting of data to the record.▪ Interactive health risk profiling and patient education resources.▪ Patient-physician secure e-mail.▪ Prevention and wellness reminders.▪ Processing of claims and payment.▪ Refilling of prescriptions.▪ Retrieving of laboratory and other tests.▪ Reviewing of insurance eligibility and benefits.▪ Scheduling appointments.Transformative health technologies are innovations that fundamentally change care, (including self-care), and care delivery in ways that add substantial value to individuals and society. When PHRs allow iterative communication between patients and providers, export data to and import data from other information systems, and transform clinical measurements and observations into meaningful and actionable information, fundamental changes in health care delivery and self-care by patients are possible. In this context, the value proposition of the integrated PHR far surpasses the value of the standalone PHR.Thus, the transformative potential of integrated PHRs is realized through enhanced functionality. The data within an electronic PHR record alone are not sufficient to realize improvements that can be considered transformative. Significant value will be realized only when PHRs incorporate systems, tools, and other resources that leverage the data in the record and enable consumers to play a more active role in their health and health care. Some of these functionalities exist today; other applications are yet to be developed.The major capabilities underlying integrated PHRs' potential as a transformative technology are outlined below.Quality, Completeness, Depth, and Accessibility of Health Information. Integrated PHRs improve the accuracy and completeness of health information provided by patients by capturing the data closer to the patient s experience and by capturing data generated by home monitoring. These data can be sent directly to health care providers when appropriate. When authorized, patient-generated data can be used for public health, research, [▪ esearch,  and perfFacile Communication. Integrated PHRs permit both synchronous and asynchronous communication among patients, providers, and informal caregivers and provide tools for interactive decision-making.▪ Access to Health Knowledge. Knowledge bases, self-care content, consensus guidelines, and best practices for both clinical and self-care can be integrated with PHRs through Internet connectivity.▪ Portability. The true value of portable medical records and other personal health information lies in the ability of consumers to access all relevant sources of content from a single interface accessible anywhere, anytime through the Internet. Integrated PHRs hold this potential.▪ Auto-population. Since many consumers will not have the skills, resources, or patience to compile their own health information, auto-population – the automatic insertion of reusable content – will be a key factor for long-term viability of PHRs [▪  of PHRs . Only th of PHRs .These capabilities will enable at least four advances in health care.First, as integrated PHRs improve the availability of patient information at the point of care, interactions between patients and medical professionals will likely improve because practitioners will need to spend less time gathering patient history and be able to spend more time with patients probing deeper into concerns, questions, and clarification about their conditions [nditions -24. AsynSecond, integrated PHRs enable electronic connectivity between clinical care managers and patients or their caregivers that can be leveraged to realize innovation in care management. The opportunities include capture of patient self-management information, data capture from home monitoring devices, links to peer support groups, and online coaching [coaching . The likcoaching .Third, integrated PHRs should enable a shift in the health care locus of control to consumers by moving the control of health information from providers to patients or to a more "shared control" model consistent with the concepts of 'advanced medical home' or health home as discussed by the American College of Physicians (ACP) and others [d others -30. The Integrated PHRs will also support health knowledge promotion and lifestyle modification, and will provide benefits from the translation of clinical data into consumer-friendly health information. Further, they should stimulate patient-oriented decision support for managing chronic illnesses in tandem with clinicians. Creative approaches to fostering health education and lifestyle changes can be enabled with interactive, integrated PHR features that are not commonly available online .Fourth, integrated PHRs should offer the following opportunities to reduce costs and improve health care delivery:▪ Facilitate the sharing of patient and administrative information among otherwise closed health care systems and thereby reduce redundant transactions and tests.▪ Promote more efficient use of time and facilitate substitution of online consultation for in-person visits.▪ Enable home monitoring to remotely record patient data.▪ Reduce the time practitioners spend gathering patient history.▪ Enable the sharing of data with authorized patient proxies such as family members or other informal caregivers and allow authorized individuals to communicate with the health care team and stay abreast of the patient s welfare, irrespective of their geographic location.As discussed later in this paper, formal evaluations are needed to quantify actual benefits as well as unanticipated, counter-intuitive effects of PHRs .Development and widespread adoption of integrated PHRs will require understanding of and response to the factors that impede their adoption and potential contribution to the health system. These factors can be organized into the following major areas.Balancing Physician and Patient Autonomy. While the clinician-patient relationship has evolved significantly towards shared decision-making, the degree to which a historic paternalistic model persists may, depending on the patient s aspirations, create a barrier to collaborative care, information sharing, and joint decision making [▪ n making . This isScope of Work/Responsibilities. Provider resistance to PHRs may stem from concerns about new processes and increased responsibilities associated with interacting with patients and using new health information technologies. Delbanco and Sands suggest that, "for doctors, at a time of disquiet, fatigue and bombardment by paper and electronic 'noise,' even if e-mail improves the quality of communications with patients it threatens to break the camel's back [▪ l's back ." Given Physician Compensation/Incentives. Electronic patient-centered communication creates several categories of unfunded work for practitioners. The lack of compensation or other incentives for responding to patient e-mail, working with data from new sources, and facilitating informed/shared decision-making are key components of the problem. However, using standard evaluation and management (E&M) coding criteria, many electronic message threads can fulfill standard office visit reimbursement criteria .▪ Concerns  about Liability Risks. Although most patients are not litigious, the widespread use of PHRs and other consumer-centric tools raises new potential areas of liability and risk for health care providers, such as the use of incomplete or inaccurate consumer-reported information, online clinician-patient communication, and privacy and security breaches [▪ breaches .Perceived public concerns about security and confidentiality are a major hurdle to the electronic exchange of personal health information in light of the various media responses to breaches of health information systems and a very vocal and effective privacy advocacy community. Yet results from recent surveys suggest that although the public remains concerned about confidentiality and security issues, Americans are increasingly interested in the use of electronic health records to help improve their health care experiences and reduce costs.A 2005 survey found that consumers rank the following issues as the absolute top priorities regarding the attributes of a health information exchange network .▪ The identity of anyone using the system would be carefully confirmed to prevent any unauthorized access or any cases of mistaken identity.▪ Individuals would be able to review who has had access to their personal health information.▪ Only with an individual's permission could medical information be shared through a network.▪ Employers and insurance companies would not have access to secure health information exchange networks.® survey indicated that many U.S. adults are generally satisfied with how their personal health information is used. A majority agreed that increased use of computers to record and share patient medical records can be accomplished without jeopardizing patient privacy rights [A study of seniors in southern California found that while most respondents indicated that any PHR system must come from a trusted source, the majority of respondents expressed the view that privacy was not a high priority concern . A 2006 y rights . Anothery rights . A 2007 y rights . As discInteroperability refers to the ability of systems to interact with one another and exchange data according to a prescribed method in order to achieve predictable results. The immaturity and slow diffusion of standards for interoperability and data portability are key barriers to the integration and exchange of structured data among PHRs and the range of relevant entities that provide and finance health care. ISO TC 215 WG1  has published a technical report on personal health records and the need for standards. The report notes that growing interest around the world in PHRs and their potential standardization is driven by convergent interests among the consumer electronic industry, the established medical devices industry, health service providers and citizens . SeveralData Interchange Standards. The codification of data, the structure and format of messages, and the health care vocabularies that promote comparable and consistent information.▪ Common Data Set/Minimum Data Set. A core data set to ensure that a minimum amount of data is available to consumers and providers for self-care and clinical encounters . A default set of fields will likewise have implications for PHR developers, EHR developers, and custodians of professionally-sourced health data  [▪ rmacies) .Consumer Terminologies. Augmentation of formal health care vocabularies with lay vernacular.▪ Authentication Processes. Entity and individual authentication to protect against unauthorized disclosure of personal health information.▪ Identification Processes. Positive patient identification processes and systems to facilitate networking of patient information, to avoid breaches of confidentiality, and to avoid preventable medical errors [▪ l errors -45.Security Standards. Administrative procedures, physical safeguards, technical data security services and technical security mechanisms.▪ Data Integrity Processes. Security mechanisms to ensure that data has not been altered or corrupted, either accidentally or intentionally in an unauthorized manner.▪ Privacy Standards. Outlining of specific rights for individuals and obligations for organizations holding PHR data regarding protected health information [▪ ormation . This maCertification. Application of objective criteria against which health information technology products can be evaluated to ensure compliance with data interchange standards.▪ High Enterprise Cost of Data Integration. The integration of health information from disparate sources is a daunting task fraught with considerable obstacles. Today, there is a general lack of affordable, out-of-the-box integration solutions to handle the cleansing, formatting, and mapping of health information from multiple sources into a coherent and meaningful format. The costs associated with inter-institutional connectivity exceed the IT infrastructure budgets for most health care organizations, requiring the allotment of highly-skilled, in-house resources or large expenditures for consulting services.▪ No Mediating Structure. Initiatives are underway in most states to develop networks of sufficient size and scale to serve as the infrastructure to support the exchange of health information among relevant stakeholders . Collaborative initiatives known as Regional Health Information Organizations (RHIOs) involving hospitals, physician practices, laboratories, pharmacies, and other organizations are being explored as a possible model for health information exchange at a regional level. Likewise, SubNetwork Organizations (SNOs) are a model for health information exchange sponsored by non-geographic communities of interest that represent populations defined by common values, needs, concerns or organizational affiliation . RHIOs and SNOs, however, are still largely conceptual; only a small number of demonstration projects have advanced beyond planning into implementation [▪ entation .Limited Online Services Offered. Nearly half of respondents to a survey of U.S. health care professionals indicated that their organization does not offer patients the ability to access online services, such as prescription refill. Only 20 percent indicate that their organization offers patients portal access to online services [▪ services .The continuing digital divide between those with and those without the ability to effectively use digital information technology is an obstacle to the promotion and use of integrated PHRs. Drivers of the digital divide include:Racial and Socio-Economic Disparity Gap. The difference in computer and Internet access to health care information is largely a function of race, education and socioeconomic status [▪ c status . For exac status . There ic status .Health Illiteracy. A study of information technology use and literacy found that nearly one of two U.S. adults has difficulty understanding information necessary to make basic health decisions [▪ ecisions .Special Needs. Special adaptive tools  may be required for individuals with visual impairment or physical limitations.▪ Lack of Financial Resources. Health care safety net agencies are especially challenged by a lack of funding for technical infrastructure and expertise to support health IT services [▪ services .Health IT investments usually require justification based on quantifiable benefits in terms of avoided cost, improved efficiency or increased revenue. The health IT business case needs to take into consideration the one-time infrastructure and labor costs for implementation, as well as ongoing system support costs. Integrated PHRs are no exception to cost benefit justification, but a variety of factors have made the integrated PHR business case difficult to ascertain.▪ There is a lack of empirical evidence in health care and informatics literature to quantify the PHR value proposition. While many of the perceived PHR benefits accrue to consumers, it is not clear that they are willing to pay or subsidize the cost of electronic health records. Although surveys consistently show substantial numbers of consumers indicating their willingness to pay for integrated PHRs, -56 this ▪ Within the current business model, savings under non-capitated reimbursement arrangements tend to accrue to payers rather than the entity that invests in the technology.▪ Benefits such as patient satisfaction, improved communication, and consumer engagement are not easily quantifiable.Like other forms of electronic health records, integrated PHRs offer both significant potential benefits for users and a high degree of risk for potential investors. The uncertain market demand arises from a host of factors.▪ Absence of information about whether there is adequate patient knowledge about as well as demand for the integrated PHR or its applications.▪ Absence of information about whether there is adequate knowledge as well as demand by other stakeholders.▪ Absence of information about whether there is adequate value for each stakeholder.▪ Concerns about who should pay and how much they should pay.▪ Absence of aligned incentives in the majority of the U.S., given the fragmented health care delivery system.▪ Concerns about strong incentives for some stakeholders to develop proprietary systems with limited functionalities.▪ Absence of information about the sustained value of integrated PHRs.▪ Concerns about the need for a critical mass of data sources and level of integration.▪ Absence of information on how workforce and work processes will change.In combination, these factors reinforce the need for public sector and philanthropic investment to increase the information needed to allow the market to assess the merits of integrated PHRs.In spite of the significant obstacles to achieving the potential of integrated personal health records, there are promising signs of progress. Taken together, they point toward a potential national model for maintaining, populating, and sharing health information in PHRs .A Common Framework for Networked Personal Health Information that identified a model for integrating consumer-centric health IT applications across the health care delivery system [In December 2006, The Connecting for Health Personal Health Technology Council released y system . The FraSeveral important milestones have been reached recently towards the goal of a higher degree of data and information exchange among providers and consumers.▪ The Healthcare Information Technology Standards Panel (HITSP)  recommen▪ The Health Level Seven (HL7) Continuity of Care Document (CCD) reflects multiple years of effort by clinical and health informatics stakeholders to harmonize two sets of separately developed, but complementary standards for clinical document architecture: the American Society for Testing and Materials (ASTM) Continuity of Care Record (CCR) and the HL7's Clinical Document Architecture (CDA) . The CCD▪ The Portable Document Format (PDF) created by Adobe Systems for desktop publishing is an open standard that is being adopted for health care information exchange by voluntary standards development organizations and other industry leaders. A new PDF/H  has been proposed as a portable, secure, and universal health care data exchange container for personal health records and electronic health records . expanding its efforts to encourage Medicare beneficiaries to take advantage of Internet-based tools to track their health care services and to provide them with resources to better communicate with their providers. This pilot program is intended to enable certain beneficiaries to use a PHR provided through participating health plans, accessible through .The Centers for Medicare & Medicaid Services (CMS) and the Department of Veterans Affairs (VA) are carrying out major new pilots to test various aspects of personal health records with their constituencies. In June 2007, CMS announced a new project (Registration Summary/Medication History PHR) CMS launched the program in conjunction with four health plans to test the use of their PHRs. The plans are HIP USA, Humana, Kaiser Permanente, and the University of Pittsburgh Medical Center. Each plan has a unique PHR tool that will be accessible to beneficiaries. The availability of different tools is expected to provide valuable information to CMS on the various features offered, including which are most popular and useful to the individual .This CMS study is part of a larger PHR action plan, which describes a number of ways that CMS can help promote the growth of PHRs and ensure that beneficiaries have private and secure access to their own health care information. CMS' action plan supports the activities being undertaken by the Office of the National Coordinator (ONC), the DHHS Office of the Assistant Secretary for Planning and Evaluation (ASPE), AHRQ, and the American Health Information Community (AHIC). a prototype developed to demonstrate that the agency can provide veterans with a safe, secure, and private electronic copy of their own VA health information through a web environment. Pilot registrants can obtain copies of key portions of their electronic health records; add structured medical data in the "self-entered" section of the record; track personal health metrics ; access health education materials; and grant access to their health information to family members and VA and non-VA health providers.The VA is testing My HealtheVet Pilot,  won the race among large technology companies to launch online health information repositories that allow consumers to import, store, and share health records from various sources [, which debuted in May 2008, users can create a personal health profile; import medical records and prescription history from healthcare providers through secure linkages; check new medications for drug interactions or allergies; refill prescriptions; ask for a second opinion; get personalized health information; and search for doctors and other medical services.Although the market for consumer-oriented health data warehousing is still in its infancy, there are several emerging models that create new opportunities for consumers to control and share their health information. For example, a consortium of major national employers announced plans to sponsor Dossia, a non-profit, independent data warehouse in which their employees can maintain lifelong personal health information . Microso sources . With Go. The focus is on the objective service of maintaining individual EHRs, much like financial banks maintain and manage financial assets. Legislation would create multiple, competing, regulated independent HRBs, owned neither by healthcare providers nor by payers or government agencies [One increasingly popular implementation approach to integrated PHRs is the Health Record Bank (HRB), defined as "an independent organization that provides a secure electronic repository for storing and maintaining an individual's lifetime health and medical records from multiple sources and assuring that the individual always has complete control over who accesses their information." agencies . Throughagencies ., a consumer-centric health company developed by AOL co-founder Steve Case, features consumer-controlled health record "banks" bundled with health education, social networking and health expense management tools. The common themes in these models are that medical records are centrally located and accessible using a secure Internet site and that the consumer controls who can make "deposits" to and "withdrawals" from their account. These models establish a consumer-selected custodian of personal health information.Revolution Health Health systems in other countries are gaining experience working with a variety of personal health record programs.Andalucia, Spain. DIRAYA (Arabic for knowledge) is an integrated, citizen-centered health solution that maintains a unified EHR based on a number of interoperable elements. It is based on 4 principles: a single health record for each person; unified access to all services; structuring (coding) of all relevant information; and system development by practitioners and providers. As the development of DIRAYA got underway, a fifth principle was adopted: "customer precedence" in which patients are not considered to be customers or clients, but rather owners. In 2007, DIRAYA had been implemented in 88% of the primary healthcare centres which cover 79% of the Andalucia population [▪ pulation .Scotland. NHS Scotland s Emergency Care Summary enables clinicians in hospital accident and emergency departments to access, with patient consent, crucial medical information on prescribed medications and allergies 24 hours a day. The program now securely holds over 5 million patient records, and has been accessed by health professionals more than 1 million times. Patients can choose to opt out of the program at any time [▪ any time .Denmark. The Health Portal  provides access for health professionals to patient data in the laboratory systems and in local electronic patient records, following patient consent. It enables patients to request appointments and renew prescriptions and enables e-mail consultation between patients and physicians [▪ ysicians .The PHR universe is an evolving space, with much work remaining to be completed on multiple fronts to advance integrated PHRs. As mentioned in the Background section of this paper, time constraints did not permit roundtable participants to develop a comprehensive list of needed actions. Their discussions did, however, suggest three key areas where private and public sector organizations can focus attention and resources to help advance integrated PHRs in the short term.Guidelines for the Use of Clinic-Patient Electronic Mail [Compilation of structured, easily accessible information about the benefits gained from existing integrated PHRs and the best practices for integrated PHR development and implementation would be an important step towards supporting organizations interested in pursuing integrated PHRs as a clinical and business strategy. This could take the form of a compendium that highlights standards of practices in PHR deployment, administration, and use. Issues addressed in the compendium could include authentication policies and procedures, e-mail response time for patient messages, communication policies regarding abnormal lab results, longitudinal record modeling, and informed consent and perspectives on consumer rights. Work in this area could build on the AMIA nic Mail  and shouA focused research agenda is needed to inform the development and implementation of integrated PHR systems, guide education about these systems, and support the development of principles of responsibility for stakeholders. For example, while much discussion has addressed the potential of personal health records, there are relatively few rigorous quantitative studies that document their impact. The agenda should be used to inform the work of public research agencies and funders such as the National Institutes of Health (NIH), CMS, ONC, and AHRQ. This research agenda should also be shared with similar advisory groups of other nations.The research agenda should address:▪ Evolving desired functionalities for integrated PHRs including studies that solicit future functionalities from the perspectives of patients, special populations, payers, providers, regulators, patient advocacy groups, etc.▪ Development and refinement of integrated PHR models for health communications and care, and identification of the applications and devices that hold the greatest transformative potential.▪ Impact studies on the effectiveness of PHRs through a systematic review of business cases and clinical use cases, and on the impact of PHRs on individual health and their potential for proactive prevention and disease prediction.▪ Evaluation of models of care delivery that are integrated with PHRs and PHR systems.▪ Liability issues and other legal barriers that confront PHR implementers.▪ Implications of integrated PHRs' use of multisource, heterogeneous and context-aware information for privacy protection, security and semantic interoperability.▪ Use of informed consent with the integrated PHR as a process for individuals to authorize the exchange of personal health information for various purposes .▪ Needs of special populations including rural, minority, central city poor, physically handicapped, and non-English speaking persons.In the short term there is a need to obtain additional sound, objective, and credible information about consumers' views of the value of integrated PHRs and desired PHR functionalities ,73. For An example of a survey addressing this need was commissioned by the Markle Foundation and conducted in May 2008 . A totalThe 2008 Markle-commissioned survey found that only 2.7 percent adults have an electronic PHR (representing about 6.1 million persons). In the future, such a survey should include a sufficiently large sample of those patients who get care through the use of integrated PHRs to determine their views of PHRs' value  and concerns about data security and privacy issues.A range of existing activities within the health information technology domain do or could support development and use of integrated PHRs. This support should be made explicit through planning and resource allocation. These activities include, but are not limited to the following:Standards development organizations advancing interoperability standards that promote integration of PHRs with EHRs by developing PHR data standards that are consistent with EHR data standards.▪ EHR vendors supporting integrated PHRs by agreeing upon common PHR standards for electronic data importation and exportation and other core functionality by 2009, and supporting integrated PHRs by including PHR functionality in their products by 2009.▪ Certification Commission for Healthcare Information Technology (CCHIT) certifying security and confidentiality standards for integrated PHRs as soon as possible and certifying integrated PHR/EHR systems by 2009. This effort can build on minimum standards development underway relating to data elements and a platform of basic functions.▪ National entities broadly promoting EHRs and explicitly addressing integrated PHRs. AHIC, the National Committee on Vital and Health Statistics (NCVHS), CCHIT and other relevant agencies or regulatory bodies dealing with electronic health records should acknowledge that PHRs are an integral component of health care communications and record-keeping by including appropriate policy, standards, demonstration projects, education, training and research efforts in their work agendas. And while several of these organizations are currently addressing PHR-related issues, moving PHRs toward a higher level of interconnectivity should be earmarked for priority action. Work plans of these entities should reflect this dimension in 2009 at the latest.▪ RHIOs and RHIO initiatives incorporating PHR integration into their planning and development efforts. RHIOs are potential enablers of integrated PHRs because of their ability to serve as focal points for authentication, authorization and data exchange among PHR and EHR stakeholders.▪ Two principal dimensions of consumer engagement in health care are at the heart of the PHR opportunity: consumer access, and to a varying extent, control over consumer health information; and active, ongoing patient collaboration in care delivery and health care decision making, including the capacity to evaluate their own health status and progress over time. The integrated PHR model asks consumers to be willing to engage with their providers in an integrated, web-based, secure  record and communication system.With some exceptions, however, the integrated PHR model is still a theoretical framework for consumer-centric health care. The integrated PHR framework will require a secure, patient-controlled, lifelong record that aggregates data from all relevant sources and is accessible at any time, any place. Transparency, including the consumer's ability to determine who has accessed or modified any part of their record, is an essential part of the consumer-centric framework. And finally, the framework must address the issues of data exchange with other information systems and health professionals .These attributes suggest an interoperable network for new channels of communication and care management. And they point toward a new tool that is clearly broader than the legal record of any provider. As traditional roles and relationships between consumers and different parts of the health care delivery and financing system are fundamentally altered by a more consumer-centric framework, stakeholders may realize a variety of new benefits from interaction with PHRs. For example, Project Health Design, the RWJ initiative mentioned above, is stimulating PHR innovation through grants to design and test a suite of consumer-centric health applications .Several key questions are clear after exploring the opportunities and challenges to creating an environment in which to realize the full potential of integrated PHRs.▪ How do we get from integrated PHR concepts to widespread practical application?▪ Privacy and security concerns present a two fold dilemma: How can unbiased public privacy surveys  that acc▪ To what extent would a coordinating body or structure expedite progress towards integrated PHRs through communication, coordination, priority setting, and pooling of resources?▪ How can existing initiatives and policy levers serve as catalysts to advance integrated PHRs?Further dialogue among public and private sector stakeholders is needed to determine how to approach the complex issues surrounding integrated PHRs.Brian Raymond has no competing interests. Meryl Bloomrosen has no competing interests. Don Detmer has no competing interests. Paul Tang has previously served on Google's Google Health Advisory Council and CapMed's Medical Advisory Board. However, he has no equity interests in either organization. Paul Tang currently serves as co-chair of the Certification Commission for Healthcare Information Technology (CCHIT) Personal Health Record (PHR) Advisory Task Force.MB, DD, BR, and PT have each made substantial contributions in drafting, writing and revising the multiple versions of the manuscript. FT and ES worked as consultants to AMIA and helped edit the document.The pre-publication history for this paper can be accessed here:


Understanding caries etiology and distribution is central to understanding potential opportunities for and likely impact of new biotechnologies and biomaterials to reduce the caries burden worldwide. This review asserts the appropriateness of characterizing caries as a "pandemic" and considers static and temporal trend reports of worldwide caries distribution. Oral health disparities within and between countries are related to sugar consumption, fluoride usage, dental care, and social determinants of health. Findings of international and U.S. studies are considered in promoting World Health Organization's and others' recommendations for science-based preventive and disease management interventions at the individual, clinical, public health, and public policy levels. In contrast to the term epidemic, from the Greek language roots for "upon" and "the people," pandemic refers to a disease that is visited upon "all the people." It suggests an impact on populations of entire countries, continents, or much of the world. The term therefore implies two elements: global distribution and severe consequence. By characterizing dental caries as a pandemic, symposium organizers have focused attention on caries as a highly prevalent disease around the globe. They have also implied that it has profound individual and societal significance because of its often severe, though non-fatal, consequences.Understanding caries etiology and distribution is central to understanding the potential opportunities for and likely impact of new biotechnologies and biomaterials to reduce the caries burden worldwide . The terpandemic is fitting because those who are affected by caries and have little or no access to care number in the hundreds of millions, reside on all continents and in most societies, and experience significant consequences of pain and dysfunction that impair their most basic functions of eating, sleeping, speaking, being productive and enjoying general health as defined by the World Health Organisation.Caries is both diet-dependent and fluoride-mediated and is amenable to prevention and management at both the individual and population levels. It is also readily treatable through conventional surgical interventions and dental repair. Therefore, the extent and severity of its consequence for individuals, communities, and nations varies by the availability and balance of these factors. As a result, there are marked disparities in caries experience, treatment experience, and disease consequences both between countries and within countries. The term The World Health Organization's 2003 report on oral health  releasedet al. [Konig  notes thet al.  note thaInternational correlates of pediatric caries experience have been explored in a search for appropriate nation-level preventive policies and programs. Comparing disease rates in 109 countries, higher levels of childhood caries were found to correlate with total sugar consumption, urbanization, and level of development but not with gross domestic product, total healthcare spending, or dentist-to-population ratio . The quaLongitudinal global trends described in the WHO report  demonstrWhile caries is declining in some countries and increasing in others, once established in a population, it does not decline to pre- sugar availability baseline levels except under extraordinary circumstances of deprivation, ,14. As sCDC's cross-sectional trend analysis over a recent decade  parallelIncreasing attention is being paid to differences in population subgroups in characterizing the distribution and correlates of dental disease, particularly in children -20. PeteTheoretical frameworks that explicate pathways between social, behavioral, and political factors and health  are bein, accessed September 5, 2005) states "Too many children suffer too much from a disease that is well understood and almost completely preventable. Childhood tooth decay is the rare example of a very common and consequential health problem that can be solved through public interventions without incurring extreme costs."Concise messages to public policymakers regarding caries interventions have been developed by a number of organizations to promote public adoption of science- and technology-based interventions that hold strong promise to reduce the caries pandemic. For example, the Washington DC-based Children's Dental Health Project  reduce disease burden through a "risk-factor" approach that focuses on high needs individuals and groups; (2) promote healthy lifestyles and reduce risk factors arising from environmental, economic, social, and behavioral sources; (3) develop oral health systems that equitably improve oral health outcomes, respond to legitimate needs, and are financially fair, and (4) integrate oral health into national and community health programs and promote oral health in public policy. The 2001 U.S. Surgeon General's invitational Workshop on Children and Oral Health focused attention on public and private policy interventions suitable for young children, including (1) start early and involve all who come in contact with young children and their families; (2) assure competencies of all providers; (3) be accountable through tracking and performance measures; (4) take public action through coalitions; (5) maximize utility of sound science; (6) improve public programs for the underserved; (7) grow an adequate and competent dental workforce; and (8) empower families to address their oral health .Noting the wide variation among countries in physical and economic resources available for dental care, WHO's Poul Erik  calls foThe author(s) declare that they have no competing interests.


This slim booklet, the product of a Novartis Foundation symposium held April 23–27, 2007, at Singapore’s Institute of Molecular and Cell Biology, primarily highlights scientific issues concerning influenza and severe acute respiratory syndrome (SARS). The booklet comprises a mere 12 chapters of about 12 pages each of reports presented and discussed by only 29 participants. This may be its strength—the book’s usefulness derives from its focus on only 2 diseases covered by multidisciplinary participants in a cross-cutting fashion and relative depth.The book contains little new material. Rather, the chapters are brief but state-of-the-art reviews that, perhaps surprisingly, fit together well. For example, Gabriele Neumann and Yoshi Kawaoka discuss broad aspects of pandemic influenza; other scientists discuss the transmission and pathogenicity of influenza viruses A (H5N1), their genetic and antigenic characteristics, general antigenic associations between human and swine viruses, and the molecular aspects of viral membrane fusion. Reading for less than half an hour yields an awareness of many key issues surrounding influenza emergence, well reviewed by international experts. The chapters about SARS are equally strong, with presentations by teams from both Taiwan and Singapore highlighting their real-world experiences in an epidemic crisis. More general presentations by Larry Anderson and Suxiang Tong (characterization of novel viruses) and by Malik Peiris and Yi Guan  provide excellent background and balance. A particularly interesting and strong chapter by Eddie Holmes reviews viral evolution and emergence, analyzing viral host-switching and the theoretical frameworks used to study it.The chapters are all well written, well edited, succinct, and readable, apparently aimed at scientists—readers familiar with both research and public health aspects of emerging viral diseases. A bonus is inclusion of discussions by the participants at the end of each chapter. Although the value of these varies, in many cases the discussion provides additional perspectives that otherwise would be missed.The book is a pleasant surprise: modest, succinct, authoritative, readable, and enjoyable. It is particularly valuable for scientists and advanced students who either work with the 2 diseases in question or who work with issues of viral disease emergence.


Radio stations that target African American audiences ("black radio") reach a national African American audience daily, making black radio an ideal medium for health promotion and disparities reduction in the African American community. Black radio can be used to communicate public health messages and to recruit African Americans into public health research. Most urban areas in the United States have radio stations that target and reach African American audiences ("black radio"). Such stations typically devote a substantial percentage of air time to programming such as call-in shows, personal on-air interviews, and community promotions, rather than news and public affairs programming . Black rBlack radio reaches a broad cross-section of the black community . The "black community" in the context of radio encompasses a globally diverse group, including African Americans, Haitians, Africans, and Caribbeans. Media marketing reports document the consistency of radio use among African Americans of all ages . For exaMarketing studies also show that African Americans listen to the radio in diverse environments, including at home, at work, in the car, in stores and restaurants, online, and more recently via mobile telephones (cell phones) . One sucUrban African American radio listeners use the radio as a source of information. A national survey of 1,895 media users of various languages and racial/ethnic backgrounds found that 58% of African American respondents use ethnic radio to obtain information . Among AOne barrier to the participation of African Americans in health promotion and intervention research and services is suspicion and mistrust of public health researchers because of a documented history of mistreatment of African Americans ,8,9. BlaOne study successfully used paid radio advertisements to recruit low-income, African American women into focus groups to explore attitudes and beliefs related to breast cancer and mammography -13. In aBlack radio has also proved effective in promoting specific public health programs. Radio was the most effective venue for reaching African American men with information about a community-based screening program, whereas newspapers were most effective for reaching white men .  In a sSince the mid-1990s, black radio has transitioned from individual, locally owned stations to large networks of stations owned by a handful of major companies. These networks have allowed influential, nationally syndicated radio personalities, such as Tom Joyner, to be heard across the country daily. The "Tom Joyner Morning Show" reaches more than 8 million listeners in more than 115 markets each week . These mSyndicated black radio has been used much less frequently to disseminate health messages than to inform listeners of political and social issues. However, 2 notable examples illustrate its potential. First, "Take a Loved One to the Doctor Day" is an annual event that urges people to take themselves or family members to a doctor for a health screening . The camwww.50millionpoundchallenge.com). Created by Ian K. Smith, MD, in early 2007, this initiative encourages African Americans to overcome obesity by highlighting the high prevalence of overweight among African American men (67%), women (80%), and adolescents (20%) and the health challenges associated with overweight and obesity .The second major public health initiative using syndicated urban radio for marketing and outreach is the "50 Million Pound Challenge" . Public health practitioners should consider using a wider range of media and approaches to change behavior and further explore how black radio — a potentially cost-effective communication channel, along with its online networks and supportive community partnerships — can be used and evaluated as a method of communicating to African American audiences.


Amchi) serve as the local medical experts.This study documents the use of medicinal plants from the Mustang district of the north-central part of Nepal. Traditional botanical medicine is the primary mode of healthcare for most of the population of this district and traditional Tibetan doctors  followed by shrubs, trees, and climbers. We document that several parts of individual plant species are used as medicine. Plant parts were generally prepared using hot or cold water as the 'solvent', but occasionally remedies were prepared with milk, honey, jaggery, ghee and oil. Amchi. Although medicinal plants still play a pivotal role in the primary healthcare of the local people of Mustang, efforts to ensure the conservation and sustainable use of medicinal species are necessary.The traditional pharmacopoeia of the Mustang district incorporates a myriad of diverse botanical flora. Traditional knowledge of the remedies is passed down through oral traditions and dedicated apprenticeships under the tutelage of senior  Plants and plant products are the primary source of medicine and a highly valued resource in Nepal. Plant constituents continue to be a vital part of Western medicine, and are still considered an important source of novel compounds in the field of drug discovery . There aAmchi medicine [Traditional medicine in Nepal is used extensively by majority of the population, and includes Ayurveda, traditional Chinese medicine (TCM), Unani and various forms of indigenous medicine including Tibetan medicine -9. Tradimedicine . In the medicine . More remedicine -14.Approximately 90% of the Nepalese people reside in rural areas where access to government health care facilities is lacking ,15. It ith position on the socioeconomic and infrastructural development index, 22nd in the Health and Development Index and 42nd in the Health institutions density among 75 districts in Nepal [The Mustang district covers 3,639 sq. km  and is lin Nepal . The MusPinus wallichiana forest, Betula utilis forest, Hippophae salicifolia forest, Caragana gerardiana forest, Caragana gerardiana and Lonicera spinosa forest, Juniperus forest) and grasslands with pure stocks of Poaceae [The vegetation of Mustang has been categorized into 8 types namely: mixed forest , which have similar geography and bioclimate -41. It hResearch has shown that the Mustang district is an important area for many useful plant resources ,43-46 anIn remote villages of Mustang, traditional medicines are of great importance in the primary healthcare of indigenous people due to the lack of sufficient and reliable government health facilities and modern Western medicines. Therefore, local plant resources are the principal source of medicine, and are prescribed by traditional healers as medicines. However, loss of biodiversity in Nepal due to several factors may also contribute to the loss of valuable indigenous knowledge of plants of several indigenous communities in Nepal ,50, inclThe plants were collected in and around the villages of Ghasa 2010 m), Lete (2480 m), Sekung Taal (2620 m), Larjung (2550 m), Kalopani (2510 m), Tukuche (2950 m), Kobang (2640 m), Kokhethanti (2520 m), Marpha (2670 m), Jomsom (2720 m), Thini (2800 m), Kagbeni (2810 m), Eklebhatti (2740 m), Jharkot (3270 m), Mukthinath (3300 m), Chhuksang (2940 m), Chele (3050 m), Samar (3660 m), Syangboche (3820 m), Ghemi (3490 m), Dhakmar (3535 m), Ghiling (3510 m), Tamagaon (3480 m), Jhaite (3570 m), Bhena (3690 m), Tsarang (3620 m) and Lomanthang (3720 m), in the Mustang district of Nepal from 2005-2007 , Kathmandu, Nepal. Plants were identified by two of us (SB and RPC) with the help of standard botanical literature -55. NomeConsent for this research project was obtained in writing from the Annapurna Conservation Area Project (ACAP), Pokhara, and prior informed consent (PIC) was obtained verbally from each participant before they were interviewed. The project was approved by the Central Department of Botany Research Committee of Tribhuvan University. We followed the ethical guidelines adopted by the ICE/International Society of Ethnobiology. We met with local community elders to explain the research project methods and intent and initiated participant recruitment only after approval by these community leaders. We employed random and snowball sampling techniques to identify potential participants and interviewed a total of 202 people (109 men and 93 women) representing a sample of the population across age groups  were the key source of information regarding medicinal plant use. The traditional healers of Mustang comprise senior Amchis , junior Amchis (student studying Amchi medicine), plant traders , and knowledgeable villagers . The local knowledgeable villagers, healers and Amchis interviewed who consented to have their names and knowledge published are listed in the acknowledgements. The completed manuscript created as a result of this project will be returned to the participating communities, and copies given to key people who collaborated in the research.Study participants included individuals from various ethnic and socioeconomic backgrounds, including Amchis who were influenced by deep practical knowledge of medicinal plants of Mustang district were interviewed during July 2005, September 2006 and June 2007. A total of 75 days were spent in the study sites. At first interviews were conducted using the 'specimen display' method. After collecting plant specimens for research, we showed these fresh specimens to the locals in order to elicit information. The same plant specimens were shown to different people to confirm the accuracy of the results. When convenient to the participants, they were asked to accompany the researchers for a walk, allowing for both plant collection and detailed information gathering. A consensus index was created based on agreement in the medicinal use of the different species cited and is included in Additional File Interviews were conducted in the local Nepali or in Gurung language dialect (translated by an interpreter), and data was collected by direct and participant-observation of study participants in fields and forests and through semi-structured interviews. Interview protocols and field observations all followed standard ethnobotanical methods -65. AmchA total of 121 species belonging to 49 vascular plant and 2 fungal families and 92 genera were reported and are indicative of the rich diversity of medicinal plant species found in this area. Study results are presented in alphabetical order by family and then followed by scientific name, voucher number, local vernacular names , phenology, and detailed uses - including methods of preparation, dosage and administration of medicine , trees (11), and climbers (4) Figure . SimilarThis study recorded that several parts of individual plant species are used as medicine. The most commonly used medicinal plant part was the root (30 species), followed by flowers (23), fruits and leaves (19 each), stem (17), seed (11), bark and cone (2 each), and bulb (1). In addition to the above common parts used, whole plant , were commonly uprooted  as the solvent, but occasionally remedies were prepared with milk (14), honey (2), jaggery , ghee (2) and oil (1) Figure . The AmcAmchis recommended different forms of medication including paste (60 species), powder (48), decoction (35), tablet (7), pills (5), cold infusion (5), and others . The Amchi traditional method of maintaining the good quality of herbal medicine is unique. For centuries, Amchi have been storing herbal medicine in a bag created from the skin of M. chrysogaster skin, which is tied twice with thread. Tying the herbal medicine in M.chrysogaster skin allows it to remain effective for one to two years. Amchi use a stone slab in place of the electric grinder in the preparation of medicine because they feel that heat created by the grinder may degrade the active chemical constituents of plant powder and thus reduce the quality of the medicine. The powder is then mixed with water and a sufficient amount of additives - honey, jaggery, etc. Additives are added according to the need of the specific plant powder to aid with the shape of the prepared pills . The process of boiling continues and complete evaporation of the water makes it easy to form the medicinal mixture into the preferred shape.Certain zootherapeutic remedies, or medicines based on animal products, were also recorded. Some common animal products used in the creation of medicines included tortoise bones and the horn and urine of the Himalayan musk deer  was the most commonly used route of administration, and was followed by topical (36), nasal and others (12) Figure . SimilarAmchis always collect local medicinal plants themselves. They stress that this is very important because they have extensive experience in the identification of Himalayan medicinal plants. They worry that a misnamed or falsely collected sample may be dangerous and cause the death of a patient. This is particularly true in the case of Aconitum orochryseum and A.spicatum (Ranunculaceae). A. spicatum is highly poisonous and is difficult to differentiate from Aconitum orochryseum. Using the wrong species by mistake can result in death. The medicine from this plant can only be prepared by highly experienced Amchi. Medicine must be made by Amchi with other medicinal plants of the Himalaya, so that the poison of that plant is inactivated without inactivating the other medicinal properties. In Mustang, A.spicatum whole plant (mainly root) is used to make medicinal tablets by the Amchi to treat infected wounds; as a tonic to provide relief from general weakness; to counteract the effects of poison, including inappropriate self medication, poison ingested on purpose or accidentally, poisonous animal stings or bites; boils; fever; allergy and edema. It is never used alone and is always mixed with several other medicinal plants of the Himalaya. A paste of the roots is applied for allergy, boils, cuts, wounds and edema after mixing with other medicinal plants.The 121 medicinal plant species recorded from Mustang were also used in miscellaneous categories of uses and hence such additional uses have added the value to medicinal plant species. The majority of medicinal plant species were used for food (33 species), fuelwood (27), fence (24), fodder and ritual & religious (19 each), decoration 8), organic manure (7), dyes & soap and psychoactive (3 each), and construction (2). However, many (50 species) have only medicinal use , people have started to conserve medicinal plants by domesticating them in home gardens, but these efforts make up only a small portion of measures necessary to conserve these species. The involvement of local communities and local stakeholders with effective monitoring of the local community resources will be the fundamental ingredient of in situ conservation of medicinal plants in Mustang. Over-harvested populations of medicinal plants from natural habitats can be improved with the aid of collaborative research projects between the local indigenous people and national and international partners having associated experts.Although local efforts to conserve medicinal plant resources are still inadequate, the long held traditional beliefs of the population regarding folk medicine has its own unintentional role in conservation, management and sustainable utilization. While over-harvesting of some important medicinal plants has increased, many The authors declare that they have no competing interests.Author SB performed the interviews with the healers, identified the herbarium specimens with RPC and drafted and finalized the manuscript with RPC, CLQ, and RSLT. Author RPC identified herbarium specimens with SB, supervised the research works and finalized the manuscript with SB. Author CLQ drafted and finalized the manuscript with SB. Author RSLT supervised the research works and drafted and finalized the manuscript with SB. All authors read and approved the final manuscript.Medicinal plants and fungi used by the people of Mustang district, Nepal.Click here for file


Amino acid insertions and deletions in proteins are considered relatively rare events, and their associations with the evolution and adaptation of organisms are not yet understood. In this study, we undertook a systematic analysis of over 214,000 polypeptides from 32 nematode species and identified insertions and deletions unique to nematode proteins in more than 1000 families and provided indirect evidence that these alterations are linked to the evolution and adaptation of nematodes.Caenorhabditis. Consistent with a requirement for conservation in proteins involved in the processing of genetic information, fewer insertions and deletions were detected in such proteins. On the other hand, more insertions and deletions were recorded for proteins inferred to be involved in the endocrine and immune systems, suggesting a link with adaptation. Similarly, proteins involved in multiple cellular pathways tended to display more deletions and insertions than those involved in a single pathway. The number of insertions and deletions shared by a range of plant parasitic nematodes were higher for proteins involved in lipid metabolism and electron transport compared with other nematodes, suggesting an association between metabolic adaptation and parasitism in plant hosts. We also identified three sizable deletions from proteins found to be specific to and shared by parasitic nematodes, which, given their uniqueness, might serve as target candidates for drug design.Amino acid alterations in sequences of nematodes were identified by comparison with homologous sequences from a wide range of eukaryotic (metzoan) organisms. This comparison revealed that the proteins inferred from transcriptomic datasets for nematodes contained more deletions than insertions, and that the deletions tended to be larger in length than insertions, indicating a decreased size of the transcriptome of nematodes compared with other organisms. The present findings showed that this reduction is more pronounced in parasitic nematodes compared with the free-living nematodes of the genus This study illustrates the significance of using comparative genomics approaches to identify molecular elements unique to parasitic nematodes, which have adapted to a particular host organism and mode of existence during evolution. While the focus of this study was on nematodes, the approach has applicability to a wide range of other groups of organisms. Novel molecular signatures specific to particular taxonomic or organismal groups have possible applications for advancing of our understanding of the species within them. In addition, emerging strategies for protein engineering and drug design exploit molecular evolutionary information of proteins -6. ApproInsertions and deletions (indels) in coding sequences have been reported to be the result of one or more mutation processes, including DNA mispairing , crossovThe paucity of information on indels, particularly those conserved across different phyla, has limited our understanding of protein function and evolution in relation to the adaptation of organisms to particular environments or hosts. Interestingly, preliminary study of proteins inferred from genomic data sets for parasitic nematodes suggested the presence of nematode-specific proteins and indels compared with other Metazoa , which emphasizes the need to undertake extensive investigation for different evolutionary groups. A systematic, comparative bioinformatics analysis of sequence and structural differences in proteins could thus provide unique insights into evolutionary and functional aspects of proteins in parasitic organisms, particularly in relation to host adaptation and ecology. From an applied perspective, such analyses could also identify indel events that might be further explored for the rational design of drugs to such unique targets. This latter statement is particularly pertinent to parasitic nematodes, because of widespread problems with drug resistance ,26 and tCaenorhabditis, many parasitic nematodes cause diseases in plants and animals and are thus of major socioeconomic importance. For instance, hundreds of millions of people are infected with geohelminths (soil-transmitted worms), such as Ancylostoma duodenale and/or Necator americanus, Trichuris trichiura and Ascaris spp. . Rec. Rec35]]Caenorhabditis and at least 2 parasitic species). Hence, only alignments that represented both Caenorhabditis and parasitic nematodes were evaluated, thus eliminating bias due to length differences. We studied the evolution of the insertions and deletions in nematodes via a detailed analysis of insertion and deletion events that were shared among different lineages or clades. The relationships of these indels were studied by examining the inferred function of their corresponding proteins. Also, the associations between the presence of indels and different tropic ecology  as well as the parasitic mode of existence were studied.Taking advantage of the abundance of nematode sequences accumulated from several nematode sequencing projects, and the large evolutionary distances between some sequences, the present study characterized insertions and deletions (indels) unique to nematode proteins. Distinct from most previous studies ,36-38, wCaenorhabditis species, Brugia malayi, and Ancylostoma caninum). Hence, a total of 214,159 polypeptides/proteins from 32 nematode species were used for the subsequent analysis . By focusing on the nematode protein families with homologues in other eukaryotic organisms, we were able to define nematode-specific indels, employing fungal sequences as outgroups. Within these 1,286 families of proteins, the defined number of deletions  was significantly greater  than the number of insertions . In addition, the deletions (31.3 residues/positions) tended to be longer than the insertions (7.1 residues/position)  representing at least two species from each clade of the phylum Nematoda  were selected (according to the distribution of member sequences according to species), in order to conduct an analysis of indel events in relation to the proposed molecular phylogeny of Nematoda. For the 173 families, 2,236 deletions and 636 insertions were identified, with a significant bias  toward deletions, and, again, the deletions tended to be larger. The indels could be classified into 11 groups based on whether they were common or restricted to clade(s) or lineages (see Methods). The distribution of indels of the 173 families Figure  showed lCaenorhabditis lineage), PPN (Plant-parasitic Nematodes), and APN . These three groups of nematodes had a limited number of common indels (Table Caenorhabditis spp. shared more insertions (213) than deletions (159). There were only three deletion events (> 10 residues) and one insertion event (1 residue) common to all parasitic nematodes. The proteins associated with the shared insertion were inferred to be involved in fatty acid synthesis (3-oxoacyl- [acyl-carrier protein] reductase). The three deletion events were linked to proteins associated with genetic information processing , and environmental information processing . Because these deletion events were shared only by parasitic nematodes representing different clades, they are likely linked to an adaptation to parasitism. To examine whether these shared, unique indels might represent novel molecular features that warrant further exploration (e.g. targets for parasite intervention), we mapped (as an example) the deletion of the protein family homologous to mitochondrial carrier protein to the structure of its bovine homologue . Groups of proteins comprising less than 10 reference sequences were excluded, as were those without fungal references. The final dataset contains 1286 protein families with sequences from at least 3 nematode species (one Caenorhabditis and two parasitic species) and not less than 10 other metazoan homologues (including fungus).Sequence data from ESTs or genomic sequencing projects are available for more than 30 species of nematodes  and others infecting animals, including humans . Indels were examined to determine whether they were associated with either or both of these groups. The five free-living species  were used as a control Figure . Furtherhttp://www.genome.jp/kegg/pathway.html. Protein family members were assigned to cellular pathways based on their homology (cut-off: 35 bits and 50% of identity) to sequences in KEGG (v.44) using WU-BLAST. The "closest" homologue was selected for each family, and insertions and deletions unique to nematodes were then linked to the pathway to which the best homologue could be assigned. Total numbers of insertions and deletions and the mean number of families associated with each pathway were calculated.Proteins and their cellular pathway annotations were retrieved from the KEGG pathway database Proteins involved in multiple pathways have more interactions with other proteins and tend to be functionally essential ,59. HereZW and MM conceived and designed the experiments. YY, JM, SA and ZW carried out experiments and analyses. ZW, RBG and MM interpreted results and prepared the manuscript. All authors have read and approved the final manuscript.Panther based classification of proteins bearing nematode specific indels. The data provided represent summary of the functional classification of the proteins bearing nematode specific indels based on the Panther protein classification system.Click here for fileKEGG based classification of proteins bearing nematode specific indels. The data provided represent summary of the pathway associations of the proteins bearing nematode specific indels based on the KEGG pathway information.Click here for fileRates of insertions and deletions of proteins involved in single or multiple pathways. The data provided are the rates in terms of the number of insertions or deletions within the proteins involved in single or multiple pathways by the numbers of protein families.Click here for fileSizeable indels (> 4 aa) in proteins involved in cellular pathways (classification based on KEGG). Summary of the identified indels within proteins involved in cellular pathways. Only indels with ≥ 4 aa are considered.Click here for file


Foot ulcers are a significant problem for people with diabetes. Comprehensive assessments of risk factors associated with diabetic foot ulcer are recommended in clinical guidelines to decrease complications such as prolonged healing, gangrene and amputations, and to promote effective management. However, the translation of clinical guidelines into nursing practice remains fragmented and inconsistent, and a recent homecare chart audit showed less than half the recommended risk factors for diabetic foot ulcers were assessed, and peripheral neuropathy (the most significant predictor of complications) was not assessed at all.Strong leadership is consistently described as significant to successfully transfer guidelines into practice. Limited research exists however regarding which leadership behaviours facilitate and support implementation in nursing.The purpose of this pilot study is to evaluate the impact of a leadership intervention in community nursing on implementing recommendations from a clinical guideline on the nursing assessment and management of diabetic foot ulcers.Two phase mixed methods design is proposed (ISRCTN 12345678). Phase I: Descriptive qualitative to understand barriers to implementing the guideline recommendations, and to inform the intervention. Phase II: Matched pair cluster randomized controlled trial (n = 4 centers) will evaluate differences in outcomes between two implementation strategies. Primary outcome: Nursing assessments of client risk factors, a composite score of 8 items based on Diabetes/Foot Ulcer guideline recommendations.Intervention: In addition to the organization's 'usual' implementation strategy, a 12 week leadership strategy will be offered to managerial and clinical leaders consisting of: a) printed materials, b) one day interactive workshop to develop a leadership action plan tailored to barriers to support implementation; c) three post-workshop teleconferences.This study will provide vital information on which leadership strategies are well received to facilitate and support guideline implementation. The anticipated outcomes will provide information to assist with effective management of foot ulcers for people with diabetes.By tracking clinical outcomes associated with guideline implementation, health care administrators will be better informed to influence organizational and policy decision-making to support evidence-based quality care. Findings will be useful to inform the design of future multi-centered trials on various clinical topics to enhance knowledge translation for positive outcomes.Current Control Trials ISRCTN06910890 Diabetes mellitus, a complex, life-long metabolic disorder characterized by raised blood glucose concentrations, affects 4.2 percent of the world's population and over 1.5 million Canadians ,4. Foot Lack of awareness of risk factors associated with diabetic foot ulcer by health care professionals and patients adds to unnecessary morbidity such as prolonged healing, infections and gangrene that may result in amputations ,5,9. MilComprehensive assessments by health care professionals of risk factors are recommended in clinical practice guidelines for effective management and treatment of diabetic foot ulcers, and are supported by strong empirical evidence -7,11-16.Clinical practice guidelines synthesize and translate high quality research evidence into recommendations for practice, and provide an easy and accessible tool for bridging the evidence-practice gap -21. For The importance of top managers' involvement and commitment in implementing innovations such as guidelines and change have been emphasized outside -39 and wThe aim of this pilot study is to evaluate the impact of a leadership intervention on implementing new recommendations from a clinical practice guideline on nursing assessments and management of foot ulcers for people with diabetes in community nursing practice. Specific objectives include:1) To identify barriers and develop a tailored leadership intervention for home care nurse managers, supervisors, resource nurses and clinical staff to influence implementation of selected recommendations from the Registered Nurses Association of Ontario (RNAO) clinical practice guideline for care of foot ulcers for people with diabetes.2) To determine the impact of the intervention on client, nurse and system outcomes.3) To understand the feasibility of influencing leadership behaviours through the intervention.4) To test and refine a model of leadership for implementing practice change.We plan to test the following study hypotheses:1H: Nurses working in centers that receive the intervention will obtain significantly higher scores for practicing in accordance with guideline recommendations than control group.0H: No change in group means will occur following the intervention.A two phase mixed method design is proposed Figure . A pilotno clients are currently being assessed for peripheral neuropathy the most significant predictor of ulcers, and recent chart audits indicated that co-morbidity, vascular status and wound size were not documented in at least 50 percent of charts for foot and leg ulcers. The organization has previously implemented clinical practice guidelines at an estimated cost of $60,000 per implementation. To date implementation strategies have had mixed success. Implementation of the RNAO guideline Assessing and Managing Foot Ulcers for People with Diabetes . TThree leadership themes emerged as central to implementing guidelines in the grounded theory study by Gifford et al., and these align closely with Yukl's  metacateDrawing on the work of Van de Ven et al. 1999), effective leadership at different hierarchical levels is necessary for the adoption of new innovations in organizations . Success9, effectChart audits will be conducted on all patients being treated for diabetic foot ulcers up to 12 weeks following the intervention. To understand the leadership and management behaviours that influenced nursing practice, semi structured qualitative interviews will be conducted with managers, supervisors and resource nurses and staff nurses at control and experimental sites (n = 20). The experimental group interview guide will also ask for participants' opinions regarding the usefulness of the intervention. The interview guides are based on previously published guides for assessing barriers and supports , and prePre/post univariate descriptive data will be computed for demographics of patients and staff.Eeach item within the scale will be coded dichotomously , and a total score calculated out of 8. Bivariate analysis using independent groups t-tests will be conducted to assess the significance of differences pre/post intervention between control and experimental groups. The alpha level will be pre-set at .05, and 95 percent confidence intervals calculated. An 'intent to treat' analysis will be used .The proportion of people with healed ulcer(s) at 12 weeks, and time to complete healing will be calculated. Types of treatments used  will be calculated. Clients with documented patient education and referrals will be dichotomously coded . Independent groups t-tests for continuous variables, and chi squares for categorical variables will determine differences before and after the intervention within each center, and between control and experimental groups. Descriptive statistics will be used to evaluate nursing participants' satisfaction and perceived utility with the elements of the intervention.ρ) will be calculated on pre/post measures of composite NACRF scores, and demographic characteristics of clients  [ICCs ( gender) . Matchin gender) ,74,108.  gender) ,109,110.To understand how the intervention influenced leadership practices, data from qualitative interviews will be audio-taped, transcribed, entered into qualitative software (NVIVO) and analyzed using content analysis techniques involving an iterative process of data reduction, data display, conclusion drawing and verification .An inherent limitation of collecting data through chart audit is the documented data obtained may potentially underestimate actual care . Other mPrior to commencement, ethical approval will be obtained from University of Ottawa Research Ethics Board which follows Tri-council guidelines . DetailsDiabetes/Foot Ulcer BPG, and has been developed in consultations with senior administrators to ensure feasibility, support, and compatibility with organizational direction, initiatives and training strategies.This study aligns with the participating organization's timeline to implement the This pilot study will contribute to the development of leadership strategies to facilitate implementation of guideline recommendations on a priority clinical topic in community nursing. The anticipated outcome is information to assist with more effective management and faster healing of foot ulcers in community health nursing for people with diabetes. With the high cost of guideline implementation, this study will provide vital information on which strategies are well received when implementing practice change. By tracking clinical outcomes associated with guideline use, nursing administrators will be better informed to influence organizational and policy decisions to support high quality nursing care. Findings will be useful to inform the design of future multi-centered trials on various clinical topics, and to enhance the science of knowledge translation for evidence-informed practice change that impacts quality nursing care and client outcomes.The authors declare that they have no competing interests.WG and BD conceptualized the study. WG led the writing and application for funding. All other authors contributed to conceptualizing based on specific areas expertise: IG for knowledge translation framework and tool development; NL for organizational feasibility and data collection methods; AT for leadership development theory and leadership outcomes; KW for quantitative methodology and power analysis. All authors have read drafted versions of the manuscript, provided input and refinements, and agreed to the final manuscript.