Optimizing genetics online resources for diverse readers.

PurposeClear and accurate genetic information should be available to health-care consumers at an individualized level of comprehension. The objective of this study is to evaluate the complexity of common online resources and to simplify text content using automated text processing tools.MethodsWe extracted all text from Genetics Home Reference and MedlinePlus in bulk and analyzed content using natural language processing. We applied custom tools to improve the readability and compared readability before and after text optimization.ResultsCommonly used educational materials were more complex than the recommended reading level for the general public. Genetic health information entries from Genetics Home Reference (n = 1279) were written at a median 13.0 grade level. MedlinePlus entries, which are not exclusively genetic (n = 1030), had a median grade level of 7.7. When we optimized text for the 59 actionable conditions by prioritizing medical details using a standard structure, the average reading grade level improved.ConclusionFactors that increase complexity are long sentences and difficult words. Future strategies to reduce complexity include prioritizing relevant details and using more illustrations. Simplifying and providing standardized online health resources would benefit diverse consumers and promote inclusivity

Knowledge in the dark: scientific challenges and ways forward

A key dimension of our current era is Big Data, the rapid rise in produced data and information; a key frustration is that we are nonetheless living in an age of ignorance, as the real knowledge and understanding of people does not seem to be substantially increasing. This development has critical consequences, for example it limits the ability to find and apply effective solutions to pressing environmental and socioeconomic challenges. Here, we propose the concept of “knowledge in the dark”—or short: dark knowledge—and outline how it can help clarify key reasons for this development: (i) production of biased, erroneous, or fabricated data and information; (ii) inaccessibility and (iii) incomprehensibility of data and information; and (iv) loss of previous knowledge. Even in the academic realm, where financial interests are less pronounced than in the private sector, several factors lead to dark knowledge, that is they inhibit a more substantial increase in knowledge and understanding. We highlight four of these factors—loss of academic freedom, research biases, lack of reproducibility, and the Scientific tower of Babel—and offer ways to tackle them, for example establishing an international court of arbitration for research and developing advanced tools for research synthesis

Annotating patient clinical records with syntactic chunks and named entities: the Harvey corpus

The free text notes typed by physicians during patient consultations contain valuable information for the study of disease and treatment. These notes are difficult to process by existing natural language analysis tools since they are highly telegraphic (omitting many words), and contain many spelling mistakes, inconsistencies in punctuation, and non-standard word order. To support information extraction and classification tasks over such text, we describe a de-identified corpus of free text notes, a shallow syntactic and named entity annotation scheme for this kind of text, and an approach to training domain specialists with no linguistic background to annotate the text. Finally, we present a statistical chunking system for such clinical text with a stable learning rate and good accuracy, indicating that the manual annotation is consistent and that the annotation scheme is tractable for machine learning

Divided by a lack of common language? - a qualitative study exploring the use of language by health professionals treating back pain

Background: The importance of using a common language when communicating to others about back pain is acknowledged in the literature. There are broadly three areas where difficulties in communication about back pain arise. Firstly, patients seeking information from health care professionals can experience difficulties understanding them and the medical literature; secondly, misunderstandings among health professionals concerning terminology can arise. Thirdly, the lack of standardised definitions for back pain terms can make comparison of research studies problematic. This study aims to explore the meanings and issues surrounding the use of existing medical terms for back pain from the perspective of health care professionals, lay people who have consulted health care practitioners for back pain and lay people who have not seen a health care professional regarding back pain. \ud \ud Methods: A series of focus groups were used to explore participants' understanding. A purposive sampling approach was used to achieve a sample which included general practitioners, chiropractors, osteopaths, physiotherapists, and lay people. Focus groups were facilitated by an independent professional qualitative researcher. They were audio taped and full transcripts of each focus group underwent line by line analysis, identifying concepts and coded. Constant comparison was used to allow each item to be checked or compared against the rest of the data \ud \ud Results: Lay participants understood the majority of the terms explored in the group differently to the health professionals. The terms, as understood by the lay participants, can be split into three broad categories. Firstly, terms which were not understood or were misconstrued and which had inadvertent negative connotations or implications. Secondly, terms which were not understood or were misconstrued, but without this leading to negative emotional responses. Thirdly, terms which were understood by lay participants as the health professionals stated they intended them to be understood. \ud \ud Conclusion: Few of the existing medical terms were understood and accepted by lay participants in the way discussed and expected by health professionals. Misunderstandings, unintended meanings and negative emotional responses to terms were common within the study focus groups

Social Workers\u27 Perceptions of Family Preservation Programs

The passage of the Adoptions and Safe Families Act of 1997, with its focus on child safety and concurrent planning, has presented family preservation workers with new challenges and new opportunities. Twenty volunteers from a large comprehensive social service agency were interviewed to determine their experiences with two models of family preservation—Multisystemic Therapy (MST) and Traditional Family Preservation Service (TFPS) or practice as usual. Workers from both programs were able to articulate values consistent with family preservation as important strengths of the programs— keeping families together and empowering families for example. Information from referring agencies was described as variable and not especially useful when working with seriously troubled families, especially as it related to risk and child safety. Both groups indicated that the jargon of family preservation had permeated their agencies, and that working with other agencies was at times a challenge, though for different reasons. Finally, despite some reservations about the effectiveness of short-term treatment with families that face serious challenges, both groups of workers were generally satisfied with family preservation as an approach to practice