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PubMed2006

Responding rapidly to FDA drug withdrawals: design and application of a new approach for a consumer health website.

BACKGROUND: Information about drug withdrawals may not reach patients in a timely manner, and this could result in adverse events. Increasingly, the public turns to consumer health websites for health information, but such sites may not update their content for days or weeks following important events like Food and Drug Administration (FDA) drug withdrawal actions. There is no recognized standard for how quickly consumer health websites should respond to such events, and reports addressing this issue are lacking. OBJECTIVE: The objective of this study was to develop and implement an approach to enhance the efficiency with which a consumer health website (NetWellness.org) responds to FDA drug withdrawal actions. METHODS: Evaluation of the current approach used by NetWellness staff to update content affected by FDA action revealed a slow process driven by the goal of performing thorough and comprehensive review and editing. To achieve our desired goal of accurately updating affected content within 24 hours of FDA action, we developed a strategy that included rapid updating of affected Web pages with warning boxes and hyperlinks to the information about the withdrawal. With the next FDA withdrawal event, that of valdecoxib (Bextra) on April 7, 2005, we applied this new approach, observed the time and resource requirements, and monitored the rate at which consumers viewed the updated information to gauge its potential impact. RESULTS: Application of the new approach allowed one person to modify the affected Web pages in less than 1 hour and within 18 hours of the FDA announcement. Using the old strategy, response to a similar event, the withdrawal of rofecoxib (Vioxx) 6 months earlier, had taken over 3 weeks and the efforts of several personnel. Updated valdecoxib content received 188 hits within the first month and 4285 hits within 1 year. CONCLUSIONS: Rapid updating of a consumer health website's content in response to an FDA drug withdrawal event was easily accomplished by applying the approach described. This allowed consumers to view accurate information regarding the withdrawn drug much sooner than would otherwise have been the case. Given that consumers increasingly turn to websites for their health information, adoption of a rapid response standard for important health events like FDA drug withdrawals should be considered by the consumer health informatics community.

Anti-Inflammatory Agents, Non-Steroidal↗

PubMed2006

Surfing the net for medical information about psychological trauma: an empirical study of the quality and accuracy of trauma-related websites.

Psychological trauma is a major public-health problem, and trauma victims frequently turn to the Internet for medical information related to trauma. The Internet has many advantages for trauma victims, including low cost, privacy, use of access, and reduced direct social interactions. However, there are no regulations on what is posted on the Internet, or by whom, and little is known about the quality of information currently available related to the topic of psychological trauma. The purpose of this study was to evaluate the quality of Internet sites related to the topic of psychological trauma. The top 20 hits for searches on Google, AllTheWeb, and Yahoo were tabulated, using search words of 'psychological trauma', 'stress', 'PTSD', and 'trauma'. From these searches, a list of 94 unique unsponsored hits that represented accessible websites was generated. Fourteen sites were unrelated or only peripherally related, and eight were related but were not comprehensively evaluated because they represented brochures, online book sales, etc. Seventy-two websites underwent evaluation of the content, design, disclosure, ease of use, and other factors based on published guidelines for medical information sites. Forty-two per cent of sites had inaccurate information, 82% did not provide a source of their information, and 41% did not use a mental-health professional in the development of the content. Ratings of content (e.g. accuracy, reliability, etc.) were 4 (2 SD) on a scale of 1 - 10, with 10 being the best. There were similar ratings for the other variables assessed. These findings suggest that although abundant, websites providing information about psychological trauma are often not useful, and can sometimes provide inaccurate and potentially harmful information to consumers of medical information.

Empirical Research↗

PubMed2006

Electronic healthcare communications in Vietnam in 2004.

BACKGROUND: There is a lack of literature about health information systems (HIS) in "developing" countries, including Vietnam. However, computerization and network development are proceeding in these places, although not in a systematic, transparent way. OBJECTIVE: This is a preliminary overview of HIS's and healthcare communications in Vietnam's four-tiered public healthcare system. It is to indicate the direction that nation might take in order to establish a modern, standards-compliant, national HIS. METHODS: We conducted site visits and interviews in Hanoi and nearby provinces. Additional information was derived from publications of the Vietnamese government and the United Nations. RESULTS: Many of the top-level "central" hospitals have HIS's, although their quality and daily usage varies. Fewer provincial hospitals have networks; district hospitals have a few stand-alone computers, and commune health centers have no computers. Patients often go directly to higher-level providers, due to a widely held perception of better care at such sites. Communications among healthcare units are largely on paper, consisting mostly of administrative matters and some hand-written patient referrals. Telephones are used for discussions of specific matters. Internet connections are almost all dial-up and often belong to individual staff members rather than the healthcare units. Lower-level units derive much of their general medical information from television and newspapers. However, there is considerable interest in computerization among healthcare workers at all levels. CONCLUSION: Familiarization with computerized communications, i.e., training and hardware at all healthcare levels, must be the first step towards a modern healthcare communications network in Vietnam. The skills to do this already exist. The aim of such a network must be to raise the level of information and quality of care at the lower levels. Adherence to international standards, such as HL7, from the beginning would enable the country to bypass many years of haphazard development.

Delivery of Health Care↗

PubMed2000

Genetic testing of the general population: ethical and informatic concerns.

Whether we like it or not, genetic testing will almost certainly become routine medical practice within the next 25 years. Integrated circuit chips already exist that can perform 400 genetic tests simultaneously, thus greatly reducing the costs. At least one company is already working on a prototype for a handheld genetic tester that would allow primary care physicians to perform hundreds or thousands of genetic tests on a simple blood smear in just a few minutes. "Genetic report cards" for children are not very far off at all. The use of such widespread testing poses a variety of ethical dilemmas. One problem that has not been appreciated sufficiently, however, is the question of how to interpret the test results. Because of the ways the genes implicated in diseases are discovered and marketed, quantitative analysis of the tests can be extremely misleading. The difficulty is that we simply do not have sufficient information about variance in genetic and other factors in the general population to make accurate projections of a patient's risk, given the presence of a gene. This uncertainty is obscured, however, when we provide the patient with a numerical analysis of risk because it is well established that people tend to overestimate the information content of numerical projections. This situation is made far worse by the fact that we do not have enough adequately trained genetic counselors to handle the load that will soon be placed on them (and studies have shown that physicians are generally very poorly prepared to act as accurate sources of information on complex genetic issues). For these reasons, I argue that access to genetic testing should be treated the same way as access to new medical procedures and medications--namely, withheld from the general public until proven safe and effective in large-scale trials. This is certain to be an unpopular policy, but it seems the only way to prevent a great deal of abuse of genetic tests.

Ethics, Medical↗

PubMed2006

Risk analysis of information security in a mobile instant messaging and presence system for healthcare.

INTRODUCTION: Instant messaging (IM) is suited for immediate communication because messages are delivered almost in real time. Results from studies of IM use in enterprise work settings make us believe that IM based services may prove useful also within the healthcare sector. However, today's public instant messaging services do not have the level of information security required for adoption of IM in healthcare. We proposed MedIMob, our own architecture for a secure enterprise IM service for use in healthcare. MedIMob supports IM clients on mobile devices in addition to desktop based clients. METHODS: Security threats were identified in a risk analysis of the MedIMob architecture. The risk analysis process consists of context identification, threat identification, analysis of consequences and likelihood, risk evaluation, and proposals for risk treatment. RESULTS: The risk analysis revealed a number of potential threats to the information security of a service like this. Many of the identified threats are general when dealing with mobile devices and sensitive data; others are threats which are more specific to our service and architecture. Individual threats identified in the risks analysis are discussed and possible counter measures presented. DISCUSSION: The risk analysis showed that most of the proposed risk treatment measures must be implemented to obtain an acceptable risk level; among others blocking much of the additional functionality of the smartphone. To conclude on the usefulness of this IM service, it will be evaluated in a trial study of the human-computer interaction. Further work also includes an improved design of the proposed MedIMob architecture.

Computer Security↗

PubMed2003

[Sociodemographic and environmental factors associated with sports physical activity in the urban population of Peru].

OBJECTIVES: To determine the frequency of sports physical activity in the urban population of Peru and to identify the sociodemographic, economic, and environmental factors associated with that activity. METHODS: This study utilized information collected by the country's National Household Survey (Encuesta Nacional de Hogares) in the second quarter of 1997. That Survey is overseen by Peru's National Institute of Statistics and Informatics (Instituto Nacional de Estadística e Informática). The Survey was based on a probabilistic, multistage sample that was stratified for all the urban areas of the country, which was divided into eight geographic regions: metropolitan Lima, northern coast, central coast, southern coast, northern mountains, central mountains, southern mountains, and jungle. In total, 14 913 homes were visited and 45 319 people at least 15 years of age were interviewed. The frequency of engaging in sports physical activity was classified as daily, every other day, weekly, or occasional. "Regular sports activity" (RSA) was defined as engaging in sports either every day or every other day. The preferences for and obstacles to sports practice were also examined. A descriptive analysis of the levels of RSA was carried out for gender, using the chi-square test. The factors associated with RSA were analyzed through conditional multiple logistic regression and analysis of residuals, multicollinearity, and interactions. The level of significance was set at P < 0.05. RESULTS: Practicing sports at least once a week was more common among men (44.5%) than among women (32.4%), and the same was true for RSA (12.8% versus 10.5%). The age group with the highest level of RSA was 50-55 years for men (20%), and 40-45 years for women (18%). RSA was most common in three geographic regions: jungle (15.3%), central mountains (12.8%), and central coast (12.1%). RSA was least common in two regions: southern mountains (9.7%) and metropolitan Lima (10.6%). The income bracket was not associated with RSA. However, other variables associated indirectly with the socioeconomic level - such as having more formal education, being employed, and having access to the Internet or cable television - and consumption of sports information were significantly and directly associated with RSA. The most frequent barriers to practicing sports were the lack of time, the lack of nearby sports infrastructure (playing fields or courts, etc.), and people's lack of interest. RSA on the part of the members of a household was significantly associated with RSA performed by the head of the household (male or female). CONCLUSIONS: RSA is limited in the urban areas of Peru. This is most true for persons who are less than 30 years old, for women, and for residents of the Lima metropolitan area. This low RSA level is a challenge for public health, and it confirms the need for promoting active lifestyles. More study is needed on the observed positive influence when the head of the household performs RSA and on the fact that RSA is more common in urban areas outside metropolitan Lima. These two findings should also be taken into consideration in designing specific interventions.

Adolescent↗

PubMed2002

eEurope 2002: Quality Criteria for Health Related Websites.

BACKGROUND: A number of organisations have begun to provide specific tools for searching, rating, and grading this information, while others have set up codes of conduct by which site providers can attest to their high quality services. The aim of such tools is to assist individuals to sift through the mountains of information available so as to be better able to discern valid and reliable messages from those which are misleading or inaccurate. OBJECTIVE: Recognising that European citizens are avid consumers of health related information on the internet and recognising that they are already using the types of rating system described above, the European Council at Feira on June 19-20 2000 supported an initiative within eEurope 2002 to develop a core set of Quality Criteria for Health Related Websites. The specific aim was to draw up a commonly agreed set of simple quality criteria on which Member States, as well as public and private bodies, may draw in the development of quality initiatives for health related websites. These criteria should be applied in addition to relevant Community law. METHODS: A meeting was held during 2001 which drew together key players from Government departments, International Organisations, non-governmental organisations and industry, to explore current practices and experiments in this field. Some sixty invited participants from all the Member States, Norway, Switzerland, and the United States of America took part in the meeting of June 7-8, 2001: they included delegates from industrial, medical, and patient interest groups, delegates from Member States' governments, and key invited speakers from the field of health information ethics. These individuals, and many others, also took part in the web-based consultation which was open from august to November 2001. RESULTS: The broad headings for quality criteria identified include Transparency and Honesty, Authority, Privacy and data protection, Updating of information, Accountability, Responsible partnering, Editorial policy, Accessibility, the latter includes attention to guidelines on physical accessibility as well as general findability, searchability, readability, usability, etc. A metadata labelling system may be used to make health data more findable. Such a system may also be used in conjunction with quality criteria to give higher ranking by search engines to those sites or pages labelled as complying with defined quality criteria. CONCLUSIONS: The set of quality criteria is based upon a broad consensus among specialists in this field, health authorities, and prospective users. It is now to be expected that national and regional health authorities, relevant professional associations, and private medical website owners will 1) implement the Quality Criteria for Health Related Websites in a manner appropriate to their website and consumers; 2) develop information campaigns to educate site developers and citizens about minimum quality standards for health related websites; 3) draw on the wide range of health information offered across the European Union and localise such information for the benefit of citizens (translation and cultural adaptation); 4) exchange information and experience at European level about how quality standards are being implemented.

Europe↗

PubMed2004

Effects of media information on cancer patients' opinions, feelings, decision-making process and physician-patient communication.

BACKGROUND: The objective of the current study was to determine the influence of media information on the opinions and feelings of patients with cancer and to measure the factors that affected the decision-making process and physician-patient communication. METHODS: The study consisted of a sequence of 2 nationwide surveys across the same dynamic target population of 2600 unselected patients with cancer who attended 1 of 13 centers throughout Italy. The authors measured the changes in patients' opinions and attitudes at the peak of a media campaign promoting the Di Bella therapy, an unproven cancer treatment method, and after the publicized demonstration of its ineffectiveness. An identical 10-item questionnaire was used. RESULTS: Opinions and feelings changed in the two surveys according to the way the media described the efficacy of the treatment, but physician-patient communication and the decision-making process remained unchanged. Multivariate analysis confirmed the enormous influence of the media on patient opinions (odds ratio [OR], 4.67; P < 0.0001), feelings of hope (OR, 3.63; P < 0.0001), and confusion (OR, 0.51; P < 0.0001), but not on physician-patient communication or the decision-making process. Educational level influenced almost all of the studied factors, and communication and decision-making also were influenced by the patients' gender and place of residence. There was no significant correlation with patient age. CONCLUSIONS: The media play a powerful role in affecting patients' opinions and feelings; the physician-patient communication and the decision-making process are not subject to media influence but are related primarily to level of education. The power of the media should be directed toward improving the spread of scientific knowledge to encourage behavioral changes, particularly among individuals with lower levels of education.

Cross-Sectional Studies↗

PubMed2005

Systems failure in hospitals--using Reason's model to predict problems in a prescribing information system.

Both hospitals and hospital patients are bearing a massive cost as a result of the occurrence of medication prescribing errors in the public health system (Bates, D., et al. J. Am. Med. Inform. Assoc. 8(4):299-308, 2001; Lombardi, T. Medscape Pharm. Online J. 02(1), 2001; Roberts, M., and Stokes, J. eMed. J. Aust. 168:317-318, 1998). Consequently, it is important to examine and address the possible causes of this problem. In this paper we suggest that poor information systems may be a contributing factor in the occurrence of these errors. We research this issue in an HIV ward of a large public hospital through interviews and a survey instrument. We find that in a significant number of instances prescribing errors are linked to situations where information is unavailable or inaccessible. This link, between problems in information delivery and prescribing errors, is a link whose extent has not been measured previously. It is, however, a link which exposes all stakeholders in the hospital system, the patient, the clinicians, the hospital, and governments funding prescription medications, to possible loss and damage and indicates a need for the implementation of more effective systems in this area. We use Reason's model for predicting systems error (Vincent, C. BMJ 316:1154-1157, 1998) as a tool to suggest that prescribing errors have an increased likelihood of occurring if one or more of the types of failure identified in the model are present in the existing prescribing information delivery process in the hospital. While Reason's model has been applied in a medical context, it has not been previously applied to errors which result from information systems failure. We feel that applying it in this way may shed some light on the causes of prescribing error.

HIV Infections↗

PubMed2003

Applying new thinking from the linked and emerging fields of digital identity and privacy to information governance in health informatics.

Recent work in the emerging field of network or digital identity suggests a new approach to the design of informatics systems, in which the individual becomes the guardian of their own personal data, and is assisted in controlling access to it by an infrastructure that is aware of roles, such as 'doctor', and relationships, such as 'doctor-patient'.For these purposes, an 'identity' is defined as the history of a relationship between two entities, and thus encompasses not only name and address but also data that would usually be regarded as part of an electronic patient or health record. This paper presents a description of how such a true person-centric architecture might work, and shows how it can be seen as an evolution of current plans in the NHS for a national patient data spine. One application, the electronic transmission of prescriptions, is described in detail. Other applications, both within and without the healthcare field, are described in outline. The implementation of such a person-centric system requires a modest degree of technical innovation, but significant change in organisational and business models. It is suggested that there is a need for one or more not-for-profit trusts, each with a remit to act as host for an individual's digital identity, and as the individual's true agent. Service providers - such as healthcare organisations - will pay the trust for provision of authentication, and for the storage and transmission of a patient's data; the trust in turn will pay implementation partners, such as smart card issuers and providers of communication channels, acting on behalf of the individual.

Access to Information↗

PubMed2003

Back pain online: a cross-sectional survey of the quality of web-based information on low back pain.

STUDY DESIGN: A cross section of Web sites accessible to the general public was surveyed. OBJECTIVE: To evaluate the quality of information on low back pain and its treatment that a "typical" patient user might access on the Internet. SUMMARY OF BACKGROUND DATA: Individuals with back pain have a desire to learn about their condition, what to expect, and what they can do about it. Web sites play a potentially useful role in providing information to help people learn about their low back pain and select the most appropriate methods of management. METHODS: A general search using popular search engines located 60 Web sites about back pain for review. A list of criteria for evaluating and scoring back pain Web sites was established using available literature and current clinical guidelines for the management of acute low back pain. The total quality score (maximum score, 38) was composed of two separate scores: one for general quality of the site (maximum score, 14) and one for site content specific to low back pain (maximum score, 24). Statistical tests, as appropriate, were used to investigate the relation between general indicators of Web site quality and total scores obtained. RESULTS: The quality of the Web sites surveyed was poor, most of them (n = 58, 97%) scoring less than half the maximum available score. The mean total score was 7.4 (range, 2-25). The mean score was 4.9 (range, 1-12) for general Web site quality and 2.4 (range, 1-13) for content specific to low back pain. Web sites providing references, sites created more recently, and sites not created for advertising purposes tended to be of better quality. CONCLUSIONS: This study highlighted the poor quality of information, particularly information about low back pain, available to "typical" patient users on the Internet. Health care professionals must have a role in evaluating existing information and in developing good-quality evidence-based Web sites. Patients with back pain should be discouraged from using the Internet as a source of information unless the Web sites they access have been evaluated and found to provide evidence-based messages.

Back Pain↗

PubMed2007

The information sources and journals consulted or read by UK paediatricians to inform their clinical practice and those which they consider important: a questionnaire survey.

BACKGROUND: Implementation of health research findings is important for medicine to be evidence-based. Previous studies have found variation in the information sources thought to be of greatest importance to clinicians but publication in peer-reviewed journals is the traditional route for dissemination of research findings. There is debate about whether the impact made on clinicians should be considered as part of the evaluation of research outputs. We aimed to determine first which information sources are generally most consulted by paediatricians to inform their clinical practice, and which sources they considered most important, and second, how many and which peer-reviewed journals they read. METHODS: We inquired, by questionnaire survey, about the information sources and academic journals that UK medical paediatric specialists generally consulted, attended or read and considered important to their clinical practice. RESULTS: The same three information sources--professional meetings & conferences, peer-reviewed journals and medical colleagues--were, overall, the most consulted or attended and ranked the most important. No one information source was found to be of greatest importance to all groups of paediatricians. Journals were widely read by all groups, but the proportion ranking them first in importance as an information source ranged from 10% to 46%. The number of journals read varied between the groups, but Archives of Disease in Childhood and BMJ were the most read journals in all groups. Six out of the seven journals previously identified as containing best paediatric evidence are the most widely read overall by UK paediatricians, however, only the two most prominent are widely read by those based in the community. CONCLUSION: No one information source is dominant, therefore a variety of approaches to Continuing Professional Development and the dissemination of research findings to paediatricians should be used. Journals are an important information source. A small number of key ones can be identified and such analysis could provide valuable additional input into the evaluation of clinical research outputs.

Adult↗

PubMed2005

The tissue micro-array data exchange specification: a web based experience browsing imported data.

BACKGROUND: The AIDS and Cancer Specimen Resource (ACSR) is an HIV/AIDS tissue bank consortium sponsored by the National Cancer Institute (NCI) Division of Cancer Treatment and Diagnosis (DCTD). The ACSR offers to approved researchers HIV infected biologic samples and uninfected control tissues including tissue cores in micro-arrays (TMA) accompanied by de-identified clinical data. Researchers interested in the type and quality of TMA tissue cores and the associated clinical data need an efficient method for viewing available TMA materials. Because each of the tissue samples within a TMA has separate data including a core tissue digital image and clinical data, an organized, standard approach to producing, navigating and publishing such data is necessary. The Association for Pathology Informatics (API) extensible mark-up language (XML) TMA data exchange specification (TMA DES) proposed in April 2003 provides a common format for TMA data. Exporting TMA data into the proposed format offers an opportunity to implement the API TMA DES. Using our public BrowseTMA tool, we created a web site that organizes and cross references TMA lists, digital "virtual slide" images, TMA DES export data, linked legends and clinical details for researchers. Microsoft Excel and Microsoft Word are used to convert tabular clinical data and produce an XML file in the TMA DES format. The BrowseTMA tool contains Extensible Stylesheet Language Transformation (XSLT) scripts that convert XML data into Hyper-Text Mark-up Language (HTML) web pages with hyperlinks automatically added to allow rapid navigation. RESULTS: Block lists, virtual slide images, legends, clinical details and exports have been placed on the ACSR web site for 14 blocks with 1623 cores of 2.0, 1.0 and 0.6 mm sizes. Our virtual microscope can be used to view and annotate these TMA images. Researchers can readily navigate from TMA block lists to TMA legends and to clinical details for a selected tissue core. Exports for 11 blocks with 3812 cores from three other institutions were processed with the BrowseTMA tool. Fifty common data elements (CDE) from the TMA DES were used and 42 more created for site-specific data. Researchers can download TMA clinical data in the TMA DES format. CONCLUSION: Virtual TMAs with clinical data can be viewed on the Internet by interested researchers using the BrowseTMA tool. We have organized our approach to producing, sorting, navigating and publishing TMA information to facilitate such review. We have converted Excel TMA data into TMA DES XML, and imported it and TMA DES XML from another institution into BrowseTMA to produce web pages that allow us to browse through the merged data. We proposed enhancements to the TMA DES as a result of this experience. We implemented improvements to the API TMA DES as a result of using exported data from several institutions. A document type definition was written for the API TMA DES (that optionally includes proposed enhancements). Independent validators can be used to check exports against the DTD (with or without the proposed enhancements). Linking tissue core images to readily navigable clinical data greatly improves the value of the TMA.

AIDS-Related Complex↗

PubMed2003

Literature searching for clinical and cost-effectiveness studies used in health technology assessment reports carried out for the National Institute for Clinical Excellence appraisal system.

OBJECTIVE: To contribute to making searching for Technology Assessment Reports (TARs) more cost-effective by suggesting an optimum literature retrieval strategy. DATA SOURCES: A sample of 20 recent TARs. REVIEW METHODS: All sources used to search for clinical and cost-effectiveness studies were recorded. In addition, all studies that were included in the clinical and cost-effectiveness sections of the TARs were identified, and their characteristics recorded, including author, journal, year, study design, study size and quality score. Each was also classified by publication type, and then checked to see whether it was indexed in the following databases: MEDLINE, EMBASE, and then either the Cochrane Controlled Trials Register (CCTR) for clinical effectiveness studies or the NHS Economic Evaluation Database (NHS EED) for the cost-effectiveness studies. Any study not found in at least one of these databases was checked to see whether it was indexed in the Science Citation Index (SCI) and BIOSIS, and the American Society of Clinical Oncology (ASCO) Online if a cancer review. Any studies still not found were checked to see whether they were in a number of additional databases. RESULTS: The median number of sources searched per TAR was 20, and the range was from 13 to 33 sources. Six sources (CCTR, DARE, EMBASE, MEDLINE, NHS EED and sponsor/industry submissions to National Institute for Clinical Excellence) were used in all reviews. After searching the MEDLINE, EMBASE and NHS EED databases, 87.3% of the clinical effectiveness studies and 94.8% of the cost-effectiveness studies were found, rising to 98.2% when SCI, BIOSIS and ASCO Online and 97.9% when SCI and ASCO Online, respectively, were added. The median number of sources searched for the 14 TARs that included an economic model was 9.0 per TAR. A sensitive search filter for identifying non-randomised controlled trials (RCT), constructed for MEDLINE and using the search terms from the bibliographic records in the included studies, retrieved only 85% of the known sample. Therefore, it is recommended that when searching for non-RCT studies a search is done for the intervention alone, and records are then scanned manually for those that look relevant. CONCLUSIONS: Searching additional databases beyond the Cochrane Library (which includes CCTR, NHS EED and the HTA database), MEDLINE, EMBASE and SCI, plus BIOSIS limited to meeting abstracts only, was seldom found to be effective in retrieving additional studies for inclusion in the clinical and cost-effectiveness sections of TARs (apart from reviews of cancer therapies, where a search of the ASCO database is recommended). A more selective approach to database searching would suffice in most cases and would save resources, thereby making the TAR process more efficient. However, searching non-database sources (including submissions from manufacturers, recent meeting abstracts, contact with experts and checking reference lists) does appear to be a productive way of identifying further studies.

Abstracting and Indexing↗

PubMed2003

Searching for cancer information on the internet: analyzing natural language search queries.

BACKGROUND: Searching for health information is one of the most-common tasks performed by Internet users. Many users begin searching on popular search engines rather than on prominent health information sites. We know that many visitors to our (National Cancer Institute) Web site, cancer.gov, arrive via links in search engine result. OBJECTIVE: To learn more about the specific needs of our general-public users, we wanted to understand what lay users really wanted to know about cancer, how they phrased their questions, and how much detail they used. METHODS: The National Cancer Institute partnered with AskJeeves, Inc to develop a methodology to capture, sample, and analyze 3 months of cancer-related queries on the Ask.com Web site, a prominent United States consumer search engine, which receives over 35 million queries per week. Using a benchmark set of 500 terms and word roots supplied by the National Cancer Institute, AskJeeves identified a test sample of cancer queries for 1 week in August 2001. From these 500 terms only 37 appeared >or= 5 times/day over the trial test week in 17208 queries. Using these 37 terms, 204165 instances of cancer queries were found in the Ask.com query logs for the actual test period of June-August 2001. Of these, 7500 individual user questions were randomly selected for detailed analysis and assigned to appropriate categories. The exact language of sample queries is presented. RESULTS: Considering multiples of the same questions, the sample of 7500 individual user queries represented 76077 queries (37% of the total 3-month pool). Overall 78.37% of sampled Cancer queries asked about 14 specific cancer types. Within each cancer type, queries were sorted into appropriate subcategories including at least the following: General Information, Symptoms, Diagnosis and Testing, Treatment, Statistics, Definition, and Cause/Risk/Link. The most-common specific cancer types mentioned in queries were Digestive/Gastrointestinal/Bowel (15.0%), Breast (11.7%), Skin (11.3%), and Genitourinary (10.5%). Additional subcategories of queries about specific cancer types varied, depending on user input. Queries that were not specific to a cancer type were also tracked and categorized. CONCLUSIONS: Natural-language searching affords users the opportunity to fully express their information needs and can aid users naïve to the content and vocabulary. The specific queries analyzed for this study reflect news and research studies reported during the study dates and would surely change with different study dates. Analyzing queries from search engines represents one way of knowing what kinds of content to provide to users of a given Web site. Users ask questions using whole sentences and keywords, often misspelling words. Providing the option for natural-language searching does not obviate the need for good information architecture, usability engineering, and user testing in order to optimize user experience.

Benchmarking↗