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A standards based ontological approach to information handling for use by organizations providing human tissue for research.

ABSTRACT: Tissue resources have become an important component of the infrastructure of institutions as well as companies performing biomedical research. Such tissue resources may be in the model of a bank, collecting a limited type of tissues and processing and storing them following a specific protocol. Such banks or archives may be associated with a clinical study or may function indepedently. An alternative type of tissue resource is utilized by many institutions and cancer centers. In this model, the investigator specifies the methods by which selected tissues are to be collected, processed and stored. In such a "prospective model", initially developed at the University of Alabama at Birmingham and the Ohio State University in the late 1970's and adopted by the Cooperative Human Tissue Network in 1986, specific types of tissues are not collected unless requested by an investigator. At some sites, both a prospective and an archival (bank) model are followed. This article describes an informatics approach needed to support a prospective tissue resource. It is by necessity more complicated than a model which supports a tissue bank but also can be used by a tissue bank. Of great importance is the approach to vocabulary and common data elements needed to support the informatics system of a prospective tissue resource, especially if the informatics system is to be used by a variety of personnel with greatly varying educational backgrounds.

SUBMITTER: Edgerton ME

PROVIDER: S-EPMC2623300 | biostudies-literature | 2008

REPOSITORIES: biostudies-literature

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A standards based ontological approach to information handling for use by organizations providing human tissue for research.

Edgerton Mary E ME Morrison Carl C LiVolsi Virginia A VA Moskaluk Christopher A CA Qualman Stephen J SJ Washington M Kay MK Grizzle William E WE

Cancer informatics 20080410

Tissue resources have become an important component of the infrastructure of institutions as well as companies performing biomedical research. Such tissue resources may be in the model of a bank, collecting a limited type of tissues and processing and storing them following a specific protocol. Such banks or archives may be associated with a clinical study or may function indepedently. An alternative type of tissue resource is utilized by many institutions and cancer centers. In this model, the ...[more]

PMID: 19259407

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Project description:BackgroundPrevious surveys of organizations that support the development of evidence-informed health policies have focused on organizations that produce clinical practice guidelines (CPGs) or undertake health technology assessments (HTAs). Only rarely have surveys focused at least in part on units that directly support the use of research evidence in developing health policy on an international, national, and state or provincial level (i.e., government support units, or GSUs) that are in some way successful or innovative or that support the use of research evidence in low- and middle-income countries (LMICs).MethodsWe drew on many people and organizations around the world, including our project reference group, to generate a list of organizations to survey. We modified a questionnaire that had been developed originally by the Appraisal of Guidelines, Research and Evaluation in Europe (AGREE) collaboration and adapted one version of the questionnaire for organizations producing CPGs and HTAs, and another for GSUs. We sent the questionnaire by email to 176 organizations and followed up periodically with non-responders by email and telephone.ResultsWe received completed questionnaires from 152 (86%) organizations. More than one-half of the organizations (and particularly HTA agencies) reported that examples from other countries were helpful in establishing their organization. A higher proportion of GSUs than CPG- or HTA-producing organizations involved target users in the selection of topics or the services undertaken. Most organizations have few (five or fewer) full-time equivalent (FTE) staff. More than four-fifths of organizations reported providing panels with or using systematic reviews. GSUs tended to use a wide variety of explicit valuation processes for the research evidence, but none with the frequency that organizations producing CPGs, HTAs, or both prioritized evidence by its quality. Between one-half and two-thirds of organizations do not collect data systematically about uptake, and roughly the same proportions do not systematically evaluate their usefulness or impact in other ways.ConclusionThe findings from our survey, the most broadly based of its kind, both extend or clarify the applicability of the messages arising from previous surveys and related documentary analyses, such as how the 'principles of evidence-based medicine dominate current guideline programs' and the importance of collaborating with other organizations. The survey also provides a description of the history, structure, processes, outputs, and perceived strengths and weaknesses of existing organizations from which those establishing or leading similar organizations can draw.

Project description:BackgroundAlcohol misuse is an important cause of premature disability and death. While clinicians are recommended to ask patients about alcohol use and provide brief interventions and specialist referral, this is poorly implemented in routine practice. We undertook a national consultation to ascertain the appropriateness of proposed standards for recording information about alcohol use in electronic health records (EHRs) in the UK and to identify potential barriers and facilitators to their implementation in practice.MethodsA wide range of stakeholders in the UK were consulted about the appropriateness of proposed information standards for recording alcohol use in EHRs via a multi-disciplinary stakeholder workshop and online survey. Responses to the survey were thematically analysed using the Consolidated Framework for Implementation Research.ResultsThirty-one stakeholders participated in the workshop and 100 in the online survey. This included patients and carers, healthcare professionals, researchers, public health specialists, informaticians, and clinical information system suppliers. There was broad consensus that the Alcohol Use Disorders Identification Test (AUDIT) and AUDIT-Consumption (AUDIT-C) questionnaires were appropriate standards for recording alcohol use in EHRs but that the standards should also address interventions for alcohol misuse. Stakeholders reported a number of factors that might influence implementation of the standards, including having clear care pathways and an implementation guide, sharing information about alcohol use between health service providers, adequately resourcing the implementation process, integrating alcohol screening with existing clinical pathways, having good clinical information systems and IT infrastructure, providing financial incentives, having sufficient training for healthcare workers, and clinical leadership and engagement. Implementation of the standards would need to ensure patients are not stigmatised and that patient confidentiality is robustly maintained.ConclusionsA wide range of stakeholders agreed that use of AUDIT-C and AUDIT are appropriate standards for recording alcohol use in EHRs in addition to recording interventions for alcohol misuse. The findings of this consultation will be used to develop an appropriate information model and implementation guide. Further research is needed to pilot the standards in primary and secondary care.

Project description:BackgroundPrevious efforts to produce case descriptions have typically not focused on the organizations that produce research evidence and support its use. External evaluations of such organizations have typically not been analyzed as a group to identify the lessons that have emerged across multiple evaluations. Case descriptions offer the potential for capturing the views and experiences of many individuals who are familiar with an organization, including staff, advocates, and critics.MethodsWe purposively sampled a subgroup of organizations from among those that participated in the second (interview) phase of the study and (once) from among other organizations with which we were familiar. We developed and pilot-tested a case description data collection protocol, and conducted site visits that included both interviews and documentary analyses. Themes were identified from among responses to semi-structured questions using a constant comparative method of analysis. We produced both a brief (one to two pages) written description and a video documentary for each case.ResultsWe conducted 51 interviews as part of the eight site visits. Two organizational strengths were repeatedly cited by individuals participating in the site visits: use of an evidence-based approach (which was identified as being very time-consuming) and existence of a strong relationship between researchers and policymakers (which can be challenged by conflicts of interest). Two organizational weaknesses - a lack of resources and the presence of conflicts of interest - were repeatedly cited by individuals participating in the site visits. Participants offered two main suggestions for the World Health Organization (and other international organizations and networks): 1) mobilize one or more of government support, financial resources, and the participation of both policymakers and researchers; and 2) create knowledge-related global public goods.ConclusionThe findings from our case descriptions, the first of their kind, intersect in interesting ways with the messages arising from two systematic reviews of the factors that increase the prospects for research use in policymaking. Strong relationships between researchers and policymakers bodes well given such interactions appear to increase the prospects for research use. The time-consuming nature of an evidence-based approach, on the other hand, suggests the need for more efficient production processes that are 'quick and clean enough.' Our case descriptions and accompanying video documentaries provide a rich description of organizations supporting the use of research evidence, which can be drawn upon by those establishing or leading similar organizations, particularly in low- and middle-income countries.

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A standards based ontological approach to information handling for use by organizations providing human tissue for research.

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A standards based ontological approach to information handling for use by organizations providing human tissue for research.

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