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PubMed2001

Towards better informed consent in endoscopy: a study of information and consent processes in gastroscopy and flexible sigmoidoscopy.

OBJECTIVE: To determine the level of knowledge achieved by patients who have read a simple information sheet on gastroscopy and flexible sigmoidoscopy, and to determine the levels of information required by patients and solicitors specializing in clinical negligence. DESIGN: Self-administered questionnaires were sent to 516 patients in Leicester and 79 solicitors specializing in clinical negligence in England and Wales. The main objective outcome measures were the correct scores measured in a simple test of the content of information sheets about gastroscopy and flexible sigmoidoscopy. Other scores were based on the opinions of patients and solicitors on the type of information patients should receive and the levels of risk about which they should be informed. RESULTS: Of the clinical negligence specialists, 75%, compared with 44% of patients, felt that consent to procedures should be obtained 2 weeks before the test. In addition, 86% of solicitors felt that patients needed to be told about tests on at least two occasions and favoured booklets and videos. Both 48% of solicitors and 38% of patients felt that patients should be told of very uncommon risks, with 16% of clinical negligence specialists expecting patients to be told of risks of 1 in 1,000,000. The majority of patients (98%) and solicitors (95%) felt that patients should be formally tested as to whether they understand what they are told in the consent process. In an initial study of an information leaflet, South Asian patients had significantly poorer scores than English patients on formal testing of their knowledge of the leaflet's content. The poorest response (61% correct) was to a question including the word 'indigestion', which had been omitted from the information leaflet. Its inclusion led to a significant increase in the number answering the question correctly (96%). The positioning of a word in the list of reasons for doing the test was also important. In the flexible sigmoidoscopy leaflet, the word 'anaemia' was placed in the middle of a list of reasons for doing the test; only 85% answered the question correctly. In the sample of patients who received the modified gastroscopy leaflet, recall at 6 months was significantly impaired with most loss of memory being related to the purpose of the test. CONCLUSIONS: Consent needs to be supported by easy-to-read information and the patients' understanding needs to be formally tested. Important concepts must be included in this information as well as any uncommon risks of the procedure. In order to ensure that the information can be understood, the text should be reviewed by an experienced educationalist. If the text is to be used in a multicultural setting, it is important to ensure that patients for whom English is not their first language can easily understand it. The movement away from 'informed consent' towards an 'informed decision' process should facilitate these improvements.

Cultural Characteristics↗
PubMed2003

Home bowel cancer tests and informed choice--is current information sufficient?

OBJECTIVES: To evaluate the type of information that is available to purchasers of home-based bowel cancer test kits. METHODS: Manufacturers, pharmacies and independent testing programs were contacted to obtain faecal occult blood test (FOBT) kits. State cancer organisations were contacted for information on bowel cancer screening. Information on bowel cancer, the FOBT kit, the testing process and potential benefits and harms of the screening process were assessed using guidelines provided by the UK General Medical Council (GMC). RESULTS: FOBT kits and cancer organisation information provided adequate information on the purpose of screening, the screening process itself and potential benefits, but provided no information concerning uncertainties of screening or potential harms. CONCLUSIONS: On the basis of both the UK GMC criteria and patient desires for information, the information available at present falls short of being considered adequate for an informed decision to purchase a home-based FOBT. IMPLICATIONS: We must ensure adequate and balanced information is available to redress the present information asymmetry to facilitate informed participation in a potentially valuable public health initiative.

Australia↗
PubMed1987

Kepiński's information metabolism, Carnot's principle and information theory.

The generalized Carnot principle introduced by Brillouin provides a link between negentropy and information, but does not take into account the information stored in the brain, which is clearly excluded by the author. Further step in the generalization of Carnot's principle, which includes information turnover in the brain was accomplished by Kepiński in his theory of the metabolism of energy and information. According to Schrödinger, life processes require a supply of negentropy rather than energy stored in the food, more precisely, e.g., in glucose utilized by the brain, since energy is conserved, whereas negentropy is dissipated. The information (communication) channel transmits maximum information when the band width of the transmitted frequency is limited, and much less information when the restriction concerns the transmitted power, or energy. This can explain a considerable decrease in the information metabolism observed in depressive patients, whose life dynamics and, consequently, the amount of energy available for information metabolism is severly lowered. Thus, the fall in information metabolism is more pronounced in depression than in not too late phases of schizophrenia. As appears from Fonberg's studies the amygdaloid nucleus is responsible for the life dynamics. In different types of neuron code change is a significant parameter, which was so strongly stressed by Kepiński. Other problems discussed in the paper include: selection of information and its structural localization, localization of particular phases of information metabolism and their phylogenetic significance.

Brain↗
PubMed1992

Informed strategy. Information managers should play a key role in determining an organization's direction.

Hospital chief executive officers need to set directions for their facilities' information systems, and information professionals need to play a more direct role in strategic planning, according to speakers at the Computers in Healthcare Conference last May. To implement effective information systems, chief information officers must be closely connected with the organization's capital budgeting and strategic budgeting process. A key strategic role for information systems managers is to educate organization personnel in the use of information technology. As demands placed on information systems increase, improving end users' skill level is the best way to take the pressure off. Information managers must create systems that respond to changes in healthcare, including the trend toward outpatient care. The information requirements for strategic planning include an external assessment and an internal assessment. Managers should strive to create information systems capable of answering strategic questions concerning patients, payers, practice patterns, and other key issues. Information systems also must provide data that allow managers to assess strategic decisions. They should also give top managers access to information that will help them identify and pursue broad new goals and directions.

Decision Making, Organizational↗
PubMed2003

Information needs and information seeking in primary care: a study of nurse practitioners.

OBJECTIVE: The objective was to understand the information-related behavior of nurse practitioners (NPs), a population of clinicians responsible for an increasing proportion of primary care. METHODS: Two phases of data collection addressed seven research questions. The initial phase of data collection was a questionnaire sent to 300 NPs, who were asked to report their experiences of needing information as a result of patient encounters as well as their experiences of seeking information. The second phase of data collection entailed a series of interviews with twenty NPs following their encounters with patients to collect data on instances of information needs and information seeking. RESULTS: NPs most frequently needed information related to drug therapy and diagnosis. NPs with a master's degree were found to perceive information needs more frequently than their colleagues who had not received a master's degree. The information resources NPs used most frequently were consultations with colleagues, drug reference manuals, and textbooks and protocol manuals. NPs were more likely to pursue needs related to drug therapy with a print resource and needs related to diagnosis with a colleague. The generalizability of a need emerged as a negative predictor of information seeking. CONCLUSIONS: This study has addressed a number of questions about the information-related behavior of NPs in primary care practices and led to the development of a temporal model of information seeking in these settings. Results of this research underscore the importance of access to information resources in primary care practices. This study's findings also support the development of educational and outreach programs to promote evidence-based decision making among primary care clinicians.

Adult↗
PubMed1975

A biomedical information source: the National Clearinghouse for Alcohol Information.

The National Clearinghouse for Alcohol Information (NCALI) is an information resource developed by the National Institute on Alcohol Abuse and Alcoholism of the U.S. Department of Health, Education, and Welfare. It provides numerous alcohol-related information services to professionals in a wide spectrum of biomedical and other disciplines, services that are designed to aid information users in the discrimination and selection of useful literature from the volumes of available information. One such service will provide the biomedical professional, working in an alcohol-related field, with announcements of recent information in categories that he selects from 110 possible fields of interest. Another information service is the quality evaluation of technical documents. The quality evaluation system, which is under continuing development and refinement, serves the literature user by providing a literature quality prescreening process designed to aid users in their literature review and monitoring activities. Additional information services provided by the clearinghouse include Grouped Interest Guides, Subject Area Bibliographies, a quarterly magazine and a periodic general interest information service, and a wide range of special publications. Reference services provide a suitable depth of response to information requests through services that range from assemblages of standard information materials, such as pamphlets and similar publications, to automated data base searches for more technically oriented information requests.

Alcoholism↗
PubMed1999

Information needs and preference for information of women with breast cancer over a first course of radiation therapy.

The study assessed the information needs of women receiving a course of radiation therapy (RT) for breast cancer and the relationship between information needs and preference for information. Thirty-three women were interviewed during the first (T1), third (T2), and last week of RT (T3), and one month later (T4) using the Toronto Informational Needs Questionnaire--Breast Cancer and the Information Subscale of the Health Opinion Survey. Information need scores were high and did not differ significantly across time. Information need and preference for information were correlated only at T1. Findings indicate that women with breast cancer receiving RT have high information needs and preference for information may not be a meaningful indicator of their desire for information. Health care providers need to assess the women's information needs frequently and be prepared to offer on-going educational support.

Adult↗
PubMed1989

Patients' and general practitioners' satisfaction with information given on discharge from hospital: audit of a new information card.

OBJECTIVE: To determine the attitudes of patients discharged from hospital and their general practitioners to a new information card giving details about admission, diagnosis, and treatment and to assess the completeness of the information on the card. DESIGN: Consecutive patients discharged from the care of three consultant physicians over 16 weeks. SETTING: One general medical ward in a large teaching hospital. PATIENTS: A total of 275 consecutive discharges of 258 patients were studied. The mean age of patients was 60 years and mean duration of admission five days. INTERVENTION: At discharge from the ward all study patients received an information card and a copy of the card in the form of an interim discharge letter to be delivered to their general practitioner. Patients and general practitioners were asked to complete a questionnaire giving their views on the legibility, helpfulness, quality, and quantity of the information they received. Copies of all the information cards were scrutinised for completeness. MAIN RESULTS: The results were based on 208 (76%) forms returned by patients and 214 (78%) forms returned by general practitioners. Information was considered very helpful or quite helpful according to 170 (83%) forms from patients and 197 (92%) forms from general practitioners; sufficient information was provided according to 160 and 182 forms. Most patients and nearly all general practitioners thought it was a good idea to provide this information for patients at discharge. According to 125 forms from patients and 188 from general practitioners the information card was very easy or quite easy to read; 155 patients had read it at least twice and 149 were likely to refer to it again. OTHER RESULTS: The written information about the patient, the diagnosis, and what the patient had been told was generally well completed, although the date of discharge was omitted from 42 (15%) cards. Details of drugs prescribed at discharge were generally thorough. CONCLUSIONS: Giving an information card to all patients at discharge was feasible and favoured by most patients and their general practitioners. Having made minor changes in design, we think that we have produced an information card that is a convenient size and will improve communication between patients, their general practitioners, and hospital doctors. We now issue this card routinely to all patients discharged from our ward and hope that it might be widely adopted.

Attitude of Health Personnel↗
PubMed2000

Cancer patients' information needs and information seeking behaviour: in depth interview study.

OBJECTIVES: To explore why cancer patients do not want or seek information about their condition beyond that volunteered by their physicians at times during their illness. DESIGN: Qualitative study based on in-depth interviews. SETTING: Outpatient oncology clinics at a London cancer centre. PARTICIPANTS: 17 patients with cancer diagnosed in previous 6 months. MAIN OUTCOME MEASURES: Analysis of patients' narratives to identify key themes and categories. RESULTS: While all patients wanted basic information on diagnosis and treatment, not all wanted further information at all stages of their illness. Three overarching attitudes to their management of cancer limited patients' desire for and subsequent efforts to obtain further information: faith, hope, and charity. Faith in their doctor's medical expertise precluded the need for patients to seek further information themselves. Hope was essential for patients to carry on with life as normal and could be maintained through silence and avoiding information, especially too detailed or "unsafe" information. Charity to fellow patients, especially those seen as more needy than themselves, was expressed in the recognition that scarce resources-including information and explanations-had to be shared and meant that limited information was accepted as inevitable. CONCLUSIONS: Cancer patients' attitudes to cancer and their strategies for coping with their illness can constrain their wish for information and their efforts to obtain it. In developing recommendations, the government's cancer information strategy should attend to variations in patients' desires for information and the reasons for them.

Adaptation, Psychological↗
PubMed2000

Faith, hope, and charity: an in-depth interview study of cancer patients' information needs and information-seeking behavior

OBJECTIVE: To explore why cancer patients do not want or seek information about their condition beyond that volunteered by their physicians at times during their illness. DESIGN: Qualitative study based on in-depth interviews. SETTING: Outpatient oncology clinics at a London cancer center. PARTICIPANTS: 17 patients with cancer diagnosed in previous 6 months. Main outcome measures Analysis of patients' narratives to identify key themes and categories. RESULTS: While all patients wanted basic information on diagnosis and treatment, not all wanted further information at all stages of their illness. Three overarching attitudes to their management of cancer limited patients' desire for and subsequent efforts to obtain further information : faith, hope, and charity. Faith in their doctor's medical expertise precluded the need for patients to seek further information themselves. Hope was essential for patients to carry on with life as normal and could be maintained through silence and avoiding information, especially too detailed or "unsafe" information. Charity to fellow patients, especially those seen as more needy than themselves, was expressed in the recognition that scarce resources-including information and explanations-had to be shared and meant that limited information was accepted as inevitable. CONCLUSIONS: Cancer patients' attitudes to cancer and their strategies for coping with their illness can constrain their wish for information and their efforts to obtain it. In developing recommendations, the government's cancer information strategy should attend to variations in patients' desires for information and the reasons for them.

Journal Article↗
PubMed2003

Location-based health information services: a new paradigm in personalised information delivery.

Brute health information delivery to various devices can be easily achieved these days, making health information instantly available whenever it is needed and nearly anywhere. However, brute health information delivery risks overloading users with unnecessary information that does not answer their actual needs, and might even act as noise, masking any other useful and relevant information delivered with it. Users' profiles and needs are definitely affected by where they are, and this should be taken into consideration when personalising and delivering information to users in different locations. The main goal of location-based health information services is to allow better presentation of the distribution of health and healthcare needs and Internet resources answering them across a geographical area, with the aim to provide users with better support for informed decision-making. Personalised information delivery requires the acquisition of high quality metadata about not only information resources, but also information service users, their geographical location and their devices. Throughout this review, experience from a related online health information service, HealthCyberMap http://healthcybermap.semanticweb.org/, is referred to as a model that can be easily adapted to other similar services. HealthCyberMap is a Web-based directory service of medical/health Internet resources exploring new means to organise and present these resources based on consumer and provider locations, as well as the geographical coverage or scope of indexed resources. The paper also provides a concise review of location-based services, technologies for detecting user location (including IP geolocation), and their potential applications in health and healthcare.

Journal Article↗
PubMed1995

An Internet health care information resources server as a component of a statewide medical information network.

A health care information server utilizing Internet resource discovery technology is presented as a component of a statewide medical information network. The development of an information server, including the development process and its design and operation, is presented. Menu design and implementation, which involved providing access to information resources in support of the tasks that make up the health care delivery process, are described. The potential impact of this technology on the health care delivery process is explored, and ways in which access to information can be facilitated and matched with the information needs of the various health care delivery tasks are identified. Issues associated with the use of public domain information resources are discussed, including control over Internet resources, access to information resources, network operational delays, client connection and software availability, information quality, and menu navigation. This project has demonstrated that Internet information resources exist that match the information needs of the tasks that make up the health care delivery process. Positive response has been received from physicians after initial utilization of the server in a stand-alone context. In the future, more applications will integrate the vast information resources on the Internet with traditional computing systems.

Alabama↗
PubMed2006

Requests for information by family and friends of cancer patients calling the National Cancer Institute's Cancer Information Service.

PURPOSE: To characterize their information needs, we examined the main topics of inquiry and discussion (subjects of interaction, SOI) of calls made by family and friends of cancer patients to the National Cancer Institute's Cancer Information Service's (CIS) 1-800-4-CANCER telephone information service and summarized differences by sociodemographic characteristics. DESIGN AND ANALYSIS: Data from 26 789 family or friends of cancer patients calling the CIS between September 2002 and August 2003 were analyzed. Frequencies, chi(2)'s, and logistic regressions were conducted to ascertain sample characteristics and sociodemographic correlates of each SOI. RESULTS AND CONCLUSIONS: The greatest proportion of calls concerned specific treatment information (54.9%) and general cancer site information (36.9%). Calls about specific treatment information were more likely among Asians, Hawaiian Natives, and Pacific Islanders (OR = 1.23, 1.04-1.45), and those with higher education (OR = 1.21, 1.18-1.25). As age increased, the odds of calls about specific treatment information also increased (OR = 1.05, 1.03-1.07). Females (OR = 0.78, 0.72-0.84), Hispanics (OR = 0.77, 0.67-0.89), African-Americans (OR = 0.68, 0.61-0.76), and American-Indians and Alaskan Natives (OR = 0.74, 0.58-0.93) were less likely to inquire about specific treatment information. Inquiries about general cancer site information were more likely among females (OR = 1.14, 1.06-1.23) and less likely among younger callers (OR = 0.95, 0.93-0.97) and African-Americans (OR = 0.87, 0.78-0.98). Differences in inquiries made by sociodemographic subgroups can inform the CIS' and other cancer-related organizations' efforts to develop and disseminate cancer information for family and friends of cancer patients.

Adult↗
PubMed1994

AIDS hot lines and information agencies. The consistency of their information.

OBJECTIVES: To determine the consistency of responses given by acquired immunodeficiency syndrome (AIDS) hot lines and AIDS information agencies to a standard set of questions related to human immunodeficiency virus (HIV) infection and to investigate the training of workers in these telephone information agencies. DESIGN: A two-part questionnaire that addressed issues of HIV transmission and testing (part 1) and sexual behavior, diet, alcohol use, and partner notification (part 2). SETTING: Thirty-three AIDS telephone information agencies. PARTICIPANTS: Information specialists at these agencies were contacted on multiple occasions over a 1-year period. INTERVENTION: Initially, 48 calls were made to these agencies. Responses were recorded in the words of the information specialists, categorized, and assessed for consistency. Two additional surveys using the same questionnaire were also performed, examining the variability of responses within an individual agency and the variability of responses from six agencies, three with and three without formal training of their information specialists. RESULTS: The initial survey revealed inconsistencies and inaccuracies in responses from AIDS telephone information agencies particularly in the areas of HIV testing, risk factor assessment, safe-sex recommendations, and life-style changes for infected persons. The second survey revealed variability in responses from six information specialists within a single agency. The third survey revealed that, overall, agencies with and without formal training of workers were equally inconsistent in their responses. CONCLUSIONS: There are identifiable deficiencies in the quality and consistency of information given by some AIDS telephone information agencies. Training procedures of information specialists at these agencies are variable and may be inadequate.

Acquired Immunodeficiency Syndrome↗
PubMed1993

Patient use of treatment-related information received from the Cancer Information Service.

This study explored patient information-seeking behavior and how such behavior might affect patient-physician interaction or health-care decisions. Telephone interviews were conducted with 257 patients with cancer and their relatives who called the National Cancer Institute's Cancer Information Service (CIS) and who received treatment-related information. Results indicated that these patients were generally very satisfied with communication from their treating physicians, had strong information needs, and preferred to participate in their treatment plans. They sought information from CIS just after diagnosis (49%) or during treatment (31%). Many of these patients (42%) discussed the CIS information with their physicians and 19% of these physicians sought more information or consulted a CIS referral. CIS referrals were contacted personally by 18% of patients. Stepwise discriminant analyses indicated that, compared with patients who did not, patients with either of these outcomes were more stressed by their disease and had been seen at more hospitals. Additionally, patients who shared CIS information with their physicians were also younger and more trusting that their physicians had current knowledge. Patients who themselves contacted a CIS referral were also more educated, had higher information needs, were less satisfied with the clarity of physicians' answers to their questions, called CIS earlier in their illness, and called specifically for a referral. Overall, these patients' most common information needs were for exploring all treatment options and being knowledgeable when discussing treatment plans with physicians. The information received from CIS satisfied these needs and was often communicated to their physicians.

Attitude↗
PubMed2005

Information needs and sources of information among cancer patients: a systematic review of research (1980-2003).

Understanding what cancer patients need to know and from whom they receive information during the course of care is essential to ensuring quality care. We reviewed 112 articles published from 1980 to 2003 and developed a typology summarizing cancer patients' information needs and the sources from which they receive information. The majority of articles focused on information needs and sources during the diagnosis and treatment phase. Thus, the most frequent information need was treatment-related (38.1%). The most frequent information source was health professionals (27.3%). We examined patients' information needs and sources along the continuum of care and found that during diagnosis and treatment, information needs about the stage of disease, treatment options, and side-effects of treatment were prominent; during post-treatment, patients continued to need information about treatment, and information about recovery was also important. Future research should examine cancer patients' information needs and sources throughout their cancer journey.

Adaptation, Psychological↗
PubMed2002

Information that informs rather than alienates families with disabled children: developing a model of good practice.

The importance to families with disabled children of relevant and accessible information about services has been illustrated in numerous studies and was re-emphasised by the Department of Health's 'quality protects' initiative. Indeed, the provision of information and the importance of keeping families informed is frequently viewed as a significant factor within both the concept of empowerment and the facilitation of enabling and participatory processes for service users and their families. However, although there has been considerable research highlighting parents' information needs, there has been significantly less exploration of how parents would actually like to receive this information. This paper seeks to bridge this knowledge gap and also discusses the empowering potential of user-friendly information. Drawing upon data collected from focus group discussions with parents caring for children with a range of disabilities or chronic illnesses, this paper explores how the families of service users would like to receive information. In particular, it examines the criteria by which parents judge the quality of information and their ideas as to what constitutes good practice, especially in terms of how information is presented, its content and the way it is delivered. Using these ideas and criteria, the paper begins to develop a model of good information practice that is both three-dimensional and personally interactive. Indeed, parents' desire for a combination of personal guidance and good-quality information, whether in the form of in-depth booklets or shorter directories, is viewed as being of paramount importance and, furthermore, as having an important empowering potential.

Benchmarking↗
PubMed1998

Information preferences, reading ability, and emotional changes in outpatients during the process of obtaining informed consent for autologous bone-marrow transplantation.

BACKGROUND: The complexity of autologous bone marrow transplantation (ABMT) imposes increased demands for disclosure of information to patients. This study describes the information preferences, reading ability, and emotional balance (affect) of adult patients at the time of outpatient informed consent. METHODS: Thirty patients were enrolled. The Derogatis Affects Balance Scale was used to determine each patient's emotional status before and after outpatient informed consent. The Information Styles Questionnaire was used to measure information preferences, and the Wide Range Achievement Test was used to measure reading ability. RESULTS: Every patient had at least average reading ability. Almost 90% of the patients preferred maximum amounts of detailed information. A significant change in total affectivity was seen after informed consent (p = 0.005), and the predominant pattern of change was decreases in both positive and negative affects, with a significant improvement in the positive-affects ratio. CONCLUSION: ABMT candidates tend to read well and prefer maximum amounts of information. The informed consent process is associated with significant change in the balance between positive and negative patient emotions, and the dominant pattern is neutralization of both the positive and the negative emotions. This neutralization is more pronounced for the negative emotions, suggesting that the informed consent process may make patients feel better overall.

Adolescent↗