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PubMed2006

Patients' perceptions of information received about medication prescribed for bipolar disorder: implications for informed choice.

BACKGROUND: Previous research suggests that patients are dissatisfied with information provided about medication prescribed for mental illness, but has not identified which aspects of information provision are unsatisfactory. METHODS: 223 members of the Manic Depression Fellowship (MDF) completed the Satisfaction with Information about Medicines Scale (SIMS), a validated measure of patients' satisfaction with various aspects of information provision. RESULTS: Patients reported highest dissatisfaction with information about potential problems associated with medication; over 60% of participants reported dissatisfaction with information about the risks of side effects and whether the medication would affect their sex lives. Participants were significantly less satisfied with information about potential problems associated with their medication than people prescribed medication for HIV in a previously reported study (p<.01). Those reporting low adherence to medication had significantly lower satisfaction with information scores than those reporting high adherence (p<.05). LIMITATIONS: The sample could be prone to selection bias; participants were members of an organisation for people affected by bipolar disorder, whilst the comparator group was a NHS HIV clinic sample. Furthermore, the objective amount and type of information provided was not assessed, therefore the cause of patients' dissatisfaction is not known. CONCLUSIONS: Perceived satisfaction with information is low, particularly in relation to possible drug side-effects. Health practitioners need to elicit individuals' information requirements and tailor information to meet their needs, in order to facilitate informed choice and adherence to treatment. Moreover, they need to provide information in a manner appropriate for a patient's cognitive functioning at different illness phases.

Adult↗
PubMed1994

Developing a clinical information system: the role of the chief information officer.

BACKGROUND: Chief information officers (CIOs) must play a pivotal role in the formation and implementation of a clinical information system, the subset of an organizational information system that deals specifically with support of clinical care activities. MAJOR ELEMENTS OF A CLINICAL INFORMATION SYSTEM: Major elements include the applications software, technology and data architecture, databases, and analysis. The organizational structures and processes that manage the development of improvement activities, including the clinical information system itself, are just as vital to the design of an information system as the hardware and software. THE ROLE OF THE CIO: To develop, sustain, and advance an information infrastructure, the CIO must help establish certain organizational precursors, such as medical staff involvement, experience with quality improvement, and ability to meet data needs. The CIO must then work with the senior administrative and medical leadership in developing a vision for the information system. The CIO must also create new roles and knowledge for information system and medical staff members. Interaction between information services and medical staff is vitally important to the success of a clinical information system. Organizational committees and structures that Brigham and Women's Hospital in Boston put in place to formalize the relationship between information systems and medical staff include the Clinical Initiative Development Program and the Center for Applied Medical Information Systems Research. CONCLUSION: Improving the clinical management of care and the efficacy of care processes involves complex changes in organizational culture and processes, medical practice and information system applications, technologies, staff, and data.

Academic Medical Centers↗
PubMed2006

Cancer-related information seeking: hints from the 2003 Health Information National Trends Survey (HINTS).

Few nationally representative surveys have assessed the cancer-related information seeking behavior of the American public. Data for our analysis were from the 2003 Health Information National Trends Survey (HINTS). The goals of our analysis were to characterize cancer information seekers (3,011) and nonseekers (3,348) in terms of sociodemographic, health care access, and health status variables, and to describe the nature of the cancer-related information being sought by information seekers. Significant and independent associations with seeking status were identified for gender, age, race, income, education, personal and family history of cancer, and having a usual source of health care. Information seekers were less likely to be male (OR = .51); aged 65 or older (OR = .40); Hispanic (OR = .60); to have a usual source of health care (OR = .70); and more likely to have incomes greater than $50,000 (OR = 1.50), some college (OR = 1.87) or a college degree (OR = 2.95), a prior cancer diagnosis (OR = 3.57), or a family history of cancer (OR = 2.17). Among cancer information seekers, the most frequently searched topic was cancer site-specific information (50.2%). Individuals who reported searching for cancer site-specific information were most frequently looking for information about breast cancer (23.8%), prostate cancer (11.5%), and skin cancer (11.3%). The HINTS survey provides a unique opportunity to explore the characteristics of information seekers and nonseekers and the content of information being sought by the public in a nationally representative sample; understanding gained from this effort provides generalizable and policy-relevant information about the American public's information needs.

Adolescent↗
PubMed1995

Informed consent for phase I studies: evaluation of quantity and quality of information provided to patients.

BACKGROUND: The process by which patients are informed and their consent is obtained in phase I trials has thus far been only marginally studied. Since 1986 we have followed an oral procedure, consisting of three consecutive conversations in which the investigator responsible for phase I studies, the research nurse and the patients' relatives and/or friends also participate, followed by the patients signing of a written consent form. It is required that six items of information considered essential by our staff be conveyed to patients by the responsible investigator. Meerwein's model, which defines three main dimensions of the informing process (the information itself, the emotional and interactive aspects), has been studied to ascertain whether it can be applied to evaluate the quality of the information proffered. METHODS: Thirty-two conversations were taped, transcribed and evaluated by one psychiatrist and one psychologist. A quantitative analysis of information was performed by calculating the number of patients to whom the essential items of information had been conveyed. The qualitative analysis was performed by rating on a five-point scoring system, from 1 (very bad) to 5 (excellent), the three dimensions of the informing process for each patient and by calculating for each dimension the mean score of the constituent items. RESULTS: Complete information about the characteristics of the phase I drug and the modalities of the treatment and follow up was given to almost 80% of the patients. All but one of the items of the information dimension scored 3.5 or higher, with the one related to the assessment by the doctor of the patient's understanding at the end of the consultation scoring less than 3 in 53% of the patients. All items of the emotional dimension scored higher than 3.5. Greater difficulty was encountered by the physician with the interactive dimension, the lowest mean scores being reported on the items related to the doctor's awareness of the indirectly expressed anxieties of the patients. In 71% of the consultations the three dimensions of information scored more than 3 and balanced one another, indicating a successful consultation by the Meerwein model. CONCLUSIONS: The informed consent procedure applied was satisfactory from a quantitative point of view, and the main items of information were acceptable to the patients. Meerweins's model proved to be applicable and useful for identifying pitfalls in communication. Greater attention should be paid to the indirect messages and implied criticisms of the patients to improve their participation in decision making. Physicians should become more skillful in providing adequate information and improve their methods of communication.

Adolescent↗
PubMed1997

Assessing the impact of information on evidence-based nursing practice: the EVINCE (Establishing the Value of Information to Nursing Continuing Education) project.

One of the aims of the EVINCE study (Establishing the Value of Information to Nursing Continuing Education) was to assess the impact of information obtained from information and library services about nursing knowledge, competencies, and practice. Survey methods included a critical incident type survey of the patterns of information need and use among a random sample of more than 200 nursing, midwifery, and health visiting staff at five sites and a survey of 776 searches and requests presented to 13 different information services. Questionnaire surveys were followed by selected interviews. Results indicated that information seeking in practice was often prompted by a combination of purposes, with 41 percent of information-seeking incidents involving patient care purposes combined with informal or formal education. The profile of information requests seen by the information service differed, there being more emphasis on formal education and research. Nursing professionals value highly the information obtained from information and library services, and information that helps in evidence-based practice is a priority. Information skills are varied, suggesting that much support for critical appraisal is necessary.

Clinical Competence↗
PubMed2001

[Confirmatory information search in simultaneous vs. sequential information presentation].

After having made a preliminary or final decision, people prefer information that supports their chosen alternative to information that conflicts with their choice. Jonas, Schulz-Hardt, Frey, and Thelen (in press) found that sequential presentation of information leads to an even stronger preference for supporting information than the traditional form of simultaneous presentation. Their proposed explanation for this effect was that sequential presentation induces a focus on the prior decision, thereby increasing commitment to this decision. The present experiment was designed to rule out an alternative explanation: Being repeatedly confronted with pieces of information to select from could induce the participants to search for more information than they consider to be necessary, and because less effort is required to process supporting information the additional information requests are predominantly for these supporting pieces of information. To test this alternative explanation, in the present experiment--as in the Jonas et al. (in press) experiments--simultaneous vs. sequential information presentation following a preliminary decision was manipulated. In contrast to the former experiments, this time the number of information requests was fixed: Participants in both conditions had to choose 8 out of 16 pieces of information. The results show that once again a stronger preference for supporting information arises when the information is presented sequentially compared to simultaneously. The alternative explanation mentioned above could thus be ruled out.

Adolescent↗
PubMed2001

[A study of the relation between providing healthcare information and behavior changes of people in Japan. Parental behavior changes after receiving information about the sudden infant death syndrome].

OBJECTIVE: Considering the lack of evidence concerning the relationship between providing healthcare information and behavior of people in Japan, we utilized a questionnaire to survey the parents of infants to evaluate behavior change after receiving information about the Sudden Infant Death Syndrome (SIDS). METHODS: A questionnaire about SIDS information was administered in 234 municipalities in Niigata, Gifu, Shizuoka, and Hiroshima Prefectures and in Yokohama City in November and December of 1999 to 14,879 parents who visited for the 18-month health examination of their children. The questionnaire did not ask for the participants' names. Logistic regression analysis was used to study the connection between behavior change and SIDS information sources. RESULTS: 10,900 parents returned the questionnaire to give a 73.3% response rate, 19.0% of these receiving information about SIDS risk factors from hospitals or clinics, 3.7% from public health centers, and 9.2% from their friends. More received information from the mass media such as TV programs, which provided the main source for 71.1% of the parents. The degree of behavior change was evaluated after adjustment for variables concerning a variety of information sources and other appropriate factors such as the age and sex of parents and the number of their children. We found that receiving information from hospitals or clinics significantly influences behavior changes for all kinds of risk factors. Information from public health centers, baby-care groups, and friends influenced behavior changes relevant to the risk factors for feeding methods, sleeping position, and parents' smoking. There was no relation between receiving information from the mass media and behavior change of parents. CONCLUSIONS: The mass media provide far more information than do medical facilities, public health centers, baby-care groups and personal contacts but the latter played much more effective roles in making parents change their baby care behavior. These results point to an obvious discrepancy between efficiency in providing information and the degree of behavior change elicited. We should thus take the source of information and the target population into consideration when we examine the best way to provide healthcare information for people in the future.

Adult↗
PubMed2004

A vision for child health information systems: developing child health information systems to meet medical care and public health needs.

In both the medical care and public health arenas, a variety of information systems have been developed to serve providers and program managers. In general, these systems have not been designed to share information with other information systems and provide comprehensive information about a child's health status to the information user. A number of initiatives are underway to develop integrated information systems. In December 2003, All Kids Count hosted an invitational conference "Developing Child Health Information Systems to Meet Medical Care and Public Health Needs." Through a series of plenary presentations and breakout discussion groups, participants developed a series of recommendations about governance, economic issues, information infrastructure, and uses of information from integrated child health information systems (CHIS). Common threads in the recommendations were: (1) development of a national coalition of stakeholders to promote integration of separate child health information systems within the context of ongoing national initiatives such as the National Health Information Infrastructure and the Public Health Information Network, (2) the need to develop the business and policy cases for integrated CHIS, (3) the need to develop agreement on standards for collecting and transferring information, and (4) the need to get the word out about the importance of integrating separate CHIS to improve health and health services.

Child↗
PubMed1995

Management of information: analysis of the Joint Commission's standards for information management.

In the 1994 Accreditation Manual for Hospitals, the Joint Commission on Accreditation of Healthcare Organizations published ten standards relating to the management of information. Using Andrew Abbott's systems theory of professions, the article compares the views of information management that were prevalent in hospitals before the publication of the standards with the view of information management represented by the new standards. Five characteristics of the standards are discussed: conceptual view of information management, tension between the unity and diversity of information management activity, lack of specificity about who performs information management activities, separation of professional qualifications from functions, and privileging of information systems concepts and vocabulary. The unfamiliarity of the standards and their inherent ambiquities will give rise to many attempts to interpret their meaning and intent. Five interpretive themes that may arise from the characteristics of the standards are identified: unified diversity in information management, unity in information management, diversity in information management, monotheistic view of information, and information management czar. The future of information management in hospitals will be affected by the jockeying over the interpretation and implementation of the Joint Commission's standards.

Accreditation↗
PubMed2003

The patient's perspective: a qualitative study of acute myeloid leukaemia patients' need for information and their information-seeking behaviour.

In recent years there has been an increased focus on cancer patients' information needs. The majority of the studies have led to the conclusion that most patients want as much information as possible about their disease and treatment. These studies have been large survey studies, and most of the patients enrolled in them have been out-patients. Very little is known about the information needs of severely ill cancer patients being treated as in-patients-such as those with acute myeloid leukaemia (AML). As part of a larger study dealing with AML patients' illness narratives, this work describes the information needs from the patients' perspective and their information-seeking behaviour. In-depth ethnographic interviews were conducted with each of 21 patients on two occasions: at the time of diagnosis and again 2-5 months later. Most patients did not recall much information from the time of diagnosis, except the diagnosis itself and the feelings it had aroused in them. All patients had basic medical knowledge about their disease. However, many patients-especially the elderly-expressed no need to receive further medical details about their disease. Avoiding information, in particular about the prognosis, was explained as a strategy to maintain hope. Most patients attached more importance to information about problems affecting their everyday life and how other persons had coped with their illness. They did not seek medical information on their own, although especially younger patients expressed the feeling that they "ought" to do this. There was a discrepancy between their expressed attitudes regarding the need for medical information in general and their actual information-seeking behaviour. Being informed and seeking information are discussed as society's expectations of today's cancer patient.

Acute Disease↗
PubMed2004

How physicians perceive and utilize information from a teratogen information service: the Motherisk Program.

BACKGROUND: Teratogen information services have been developed around the world to disseminate information regarding the safety of maternal exposures during pregnancy. The Motherisk Program in Toronto, Canada, fields thousands of these inquiries per year. Our primary objective was to evaluate the perception and utilization of information received from us by physicians. Our secondary objective was to examine their information seeking behavior, in particular regarding teratogen information. METHODS: A one page survey was sent to physicians who had called Motherisk for information concerning pregnancy exposures in the previous 30 days for three months. Among the questions that were asked were demographics, which included gender, years in practice, specialty, information resources, and how they utilized the information received from Motherisk. RESULTS: We received 118/200 completed questionnaires (59% response rate). The mean age of the respondents was: 42 +/- 9 years, mean years of practice was: 14 +/- 8 years, males: 46(38%) and females 72(62%) and 95(80%) were family physicians. 56(48%) researched their question prior to calling Motherisk, 106(91%) and passed on the information received to their patient verbatim. The top four resources for information were: 1) The CPS (PDR), 2) textbooks, 3) journals and 4) colleagues. Only 8% used the Medline for gathering information. CONCLUSIONS: Physicians feel that a teratogen information service is an important component in the management of women exposed to drugs, chemicals, radiation and infections diseases etc. during pregnancy. Despite the advent of the electronic age, a minority of the physicians in our survey elected to use electronic means to seek information.

Adult↗
PubMed2003

Barriers to patient information provision in primary care: patients' and general practitioners' experiences and expectations of information for low back pain.

BACKGROUND: As patient involvement in health-care increases, the role of information is crucial, especially in conditions where self-management is considered an integral part of care. However, the suitability and applicability of much patient information has not been appraised in terms of how far it meets patients' information needs. AIMS: To ascertain patients' and clinicians' experiences and expectations of information in low back pain in order to suggest a suitable 'patient-centred' content for a patient information pack to be used in a primary care setting. METHODS: A qualitative study using semi-structured interviews with General Practitioners (GPs) (n = 15) and focus groups comprising patients with low back pain (n = 37). RESULTS: Barriers to information-giving for low back pain in primary care exist. Patients are dissatisfied with the information they receive from their GPs, especially regarding diagnosis and treatment. Patients tend to access information from a variety of other sources, which is often contradictory, conflicts with research evidence and leads to unreasonable expectations. GPs have varying views regarding the value of patient information and are equivocal about their roles as information providers. Although The Back Book is generally acceptable as a patient information leaflet for low back pain, attention to the tone of the text is required. CONCLUSIONS: Barriers exist to patient information provision, both generally and for low back pain, which need to be addressed in order to close the gap between strategy and implementation. Improving clinician communication skills and involving patients in developing information materials which meet their needs are crucial to this process.

Attitude of Health Personnel↗
PubMed1993

Genetic information and health insurance. Report of the Task Force on Genetic Information and Insurance. NIH/DOE Working Group on Ethical, Legal, and Social Implications of Human Genome Research.

One of the ironies in the current health care coverage crisis is that developing more accurate biomedical information could make things worse rather than better. In the current American health care system, information about an individual's risk of disease plays a crucial role for many people in determining access to health care coverage. This link between the likelihood of needing health care and the ability to obtain coverage for that care has the unfortunate result that those most in need may have the greatest difficulty finding affordable health care coverage. New advances in human genetics are transforming medicine by making available increasing amounts of such information about risk. Biomedical science and the delivery of health care are being reshaped by advances in our understanding of human genetics. New insights into health and disease, new diagnostic and prognostic tests and the possibility of new therapies reflect significant investments by the public and by private business and are no longer limited to the uncommon disorders traditionally labeled as "genetic diseases." Among the first products of genetic research is information useful in predicting the likelihood that an individual will develop particular diseases, opening the door both to preventive strategies that we would welcome, such as changes in diet and exercise patterns, and to the unwelcome possibility of genetic discrimination. Injecting information about genetic risks into the current health care system could result in ever more refined risk rating by insurers and ever greater difficulty in finding affordable health care coverage for large numbers of people. At a minimum, people could be discouraged from obtaining genetic information that might be useful in disease prevention and early treatment or for case planning and management because that same information could jeopardize their access to health care coverage in general, or to treatment for a condition excluded from coverage because it was "pre-existing." Under other circumstances people might be compelled to provide genetic information as a condition of obtaining affordable health care coverage. Genetic risk information carries an additional, wider burden because information about an individual's genetic health risks may also be information about the risks of children, parents, brothers, sisters, and other relatives. One suggested approach--providing special protection for genetic information--is unlikely to succeed. This special protection has been suggested because of the relevance of genetic information to family members and its implications for reproductive choices, potential discrimination and stigmatization.(ABSTRACT TRUNCATED AT 400 WORDS)

Discrimination, Psychological↗
PubMed2003

Information and communication technology in cardiovascular disease prevention in developing countries: hype and hope. Report of the International Collaboration on Information Use in Cardiovascular Health Promotion in Developing Countries.

Information can be an important tool in promoting a prevention strategy to address the emerging epidemic of cardiovascular disease in developing countries. Advances in information and communication technology offer new promises for global access to information and for global mobilization to prevent and control cardiovascular disease. This is especially true for health professionals, whose needs in areas such as networking, exchange of expertise and access to relevant advances remain unfulfilled. Information technology can also sensitize the lay public to the magnitude of cardiovascular diseases, creating awareness about risk states, and highlighting preventive strategies. Effective application mandates that the technology be relevant to local needs. Cost, feasibility, and relevance of information need to be considered before wide adoption is advocated. Several initiatives, such as ProCOR, Global Cardiovascular Infobase, Heartfile, and the Virtual Congress of Cardiology, have successfully utilized information technology to promote cardiovascular prevention. The experience of these initiatives suggests that, while information technology holds great potential, there are many potential perils, such as the widening global information gap, inequitable access, and irrelevant information. For now, information technology must be viewed as part of a broader strategy, which includes conventional communication media, to address the unmet information needs for cardiovascular prevention globally. Enlightened policies can exploit the energies of the recent information boom for promoting cardiovascular prevention, taking into account the considered limitations.

Cardiovascular Diseases↗
PubMed2005

Information required to provide informed consent for endoscopy: an observational study of patients' expectations.

BACKGROUND AND STUDY AIMS: The aim of this study was to determine how much information patients require about the risk of complications in order to provide informed consent to undergo endoscopy. PATIENTS AND METHODS: Endoscopic complications and their consequences were discussed with consecutive patients who had undergone endoscopy. The patients were asked how common each complication would have to be for them to require information about the complication before providing adequately informed consent. RESULTS: Data were obtained from 150 gastroscopy patients (51% male, median age 55.5 years) and 150 colonoscopy patients (60% male, median age 54.4 years). Patients in both groups were more likely to want to know about major rather than minor complications at a lower level of risk (P < 0.001 at a risk greater than one in 1000). Similar proportions of gastroscopy patients (n = 29, 19%) and colonoscopy patients (n = 21, 14 %) wanted to know about all possible complications, no matter how inconsequential or rare. Colonoscopy patients were less likely to want no information about any complications than gastroscopy patients (n = 1, 0.7% and n = 15, 10%, respectively; P < 0.001). CONCLUSIONS: The information patients require in order to provide informed consent is very variable. Many appear to make a judgement about the need for information depending on the perceived severity of the complication, but some want information about all complications, irrespective of risk and severity. The level of risk at which they require this information is likely to be higher than the level used by doctors who are obtaining consent from patients. The process may be improved by providing procedure-specific information leaflets that offer information regarding common and serious complications.

Access to Information↗
PubMed1990

The CIO and IRM (information resources management) alliance: maneuvering for the competitive edge in hospital information management.

In 1986, Johns noted that "The hospital industry was caught unprepared for the external demands and information needs required in a case-mix reimbursement environment." Lack of a data-processing philosophy and inattention to external forces were cited as having hampered technology upgrade and integration of financial and clinical databases. The intervening years have witnessed a growth of information dissemination in the health care industry concerning information value and resource management. The frequency of appearance of articles on information management in the professional literature and the number of workshops and professional meetings addressing the topic attest to the current visibility of the information resource. Despite this flurry of interest, the industry has not developed its own models of information resources management nor validated its information evolution with accepted management information systems models. While interest in health care information resource management exists, understanding of the complex issues in this area has not developed as one would expect. While there are a myriad of reasons for this, a contributing factor is the lack of a research foundation for development and application of theory and models. Even though various graduate programs exist in medical informatics and biomedical computing, few concentrate on the study of health information resource management from an organizational perspective. Because of this, academic research in the area has been minimal. The scarcity of graduate-level programs has also meant that few individuals have been educated to deal with the challenges of managing the many disparate functional activities associated with health care information resource management. Due to a variety of internal and external forces, extreme demands were placed on the hospital information resource during the past decade.(ABSTRACT TRUNCATED AT 250 WORDS)

Hospital Administrators↗
PubMed2006

[Quality of information transfer for informed consent: an experimental study in 21 patients].

PURPOSE OF THE STUDY: Delivering information to the patient, an ethical obligation recognized for years, has recently become a legal obligation. Proof of information delivery has become the legal responsibility of the surgeon. We conducted a prospective study to evaluate the quality of information transfer by assessing patient comprehension of information delivered in an orthopedic surgery unit. MATERIAL AND METHODS: All patients attending consultations before undergoing arthroscopic treatment for rotator cuff tendinopathy were enrolled in this study when the consultation was conducted in the presence of an observer. Two questionnaires, one for the patient and one for the surgeon, were used to collect given information about the pathological condition, the modalities of treatment, and the expected results of the treatment and its complications. RESULTS: All 21 patients included in the study considered they had been well informed and that they had understood their pathological condition as well as the complications of the proposed treatment. However, agreement between their stated comprehension and the information delivered was poor, varying from 15 to 50%. Furthermore, 90% of the patients stated they had understood the potential complications of the surgical procedure, despite the fact that the consulting surgeons had not (generally) provided information on such complications. DISCUSSION: There is a gap between what the surgeon says (or thinks he/she says) and what the patient understands. Potential biases in this study (non-unbiased observer) might explain this discordance which was probably related to the unequal relationship between the patient and the physician for any consultation. Therefore, the basis of informed consent cannot be found in the details concerning complications actually delivered to the patient. Surgeons must become aware that the patients understand very little of their explanations. This does not mean that the information should not be delivered but on the contrary that it must be. The important point is not necessarily the information content but rather the quality of the human relationship enabling information transfer.

Adult↗
PubMed2004

Informed consent in the (mis)information age.

Recent studies suggest that large numbers of health-care consumers are turning to the Internet as a source of health information. This article considers the potential impact of on-line health information on women's health-care decisions, and the role of physicians relating to their patients' use of the Internet as an information source. In particular, the article examines the effect of on-line health information on the informed consent process. Physicians' disclosure obligations (their legal duty to provide information to patients) and the law of informed consent are briefly described. The article then considers the Internet as a source of health information, and instances and types of misinformation. Finally, the article suggests steps physicians may take to help their patients benefit from Internet health information and to become critical consumers who do not fall victim to inaccurate or misleading information. The article concludes by suggesting that physicians make a practice of asking their patients about alternate sources of information they may have accessed, in order to help ensure that patients' health-care decisions are based on current, accurate, and complete information.

Canada↗