Showing papers in "Health Expectations in 2000"

Implementing shared decision-making in routine practice: barriers and opportunities.

Abstract: Objective Determine feasibility of shared decision-making programmes in fee-for-service hospital systems including physicians’ offices and in-patient facilities. Design Survey and participant observation. Data obtained during Phase 1 of a patient outcome study. Settings and participants Three hospitals in Michigan: one 299-bed rural regional hospital, one 650-bed urban community hospital, one 459-bed urban and suburban teaching hospital. All nurses and physicians who agreed to use the programmes participated in the evaluation (n = 34). Intervention Two shared decision-making® (SDP) multimedia programmes: surgical treatment choice for breast cancer and ischaemic heart disease treatment choice. Main outcome measures (1) clinicians’ evaluations of programme quality; (2) challenges in hospital settings; and (3) patient referral rates. Results SDP programmes were judged to be clear, accurate and about the right length and amount of information. Programmes were judged to be informative and appropriate for patients to see before making a decision. Clinicians were neutral about patients’ desire to participate in treatment decision-making. Referral volume to SDPs was lower than expected: 24 patients in 7 months across three hospitals. Implementation challenges centred on time pressures in patient care. Conclusions Productivity and time pressure in US health care severely constrain shared decision-making programme implementation. Physician referral may not be a reliable mechanism for patient access. Possible innovations include: (1) incorporation into the informed consent process; (2) provider or payer negotiated requirement in the routine hospital procedure to use the SDP as a quality indicator; and (3) payer reimbursement to professional providers who make SDP programmes available to patients.

Doctor-patient communication patterns in breast cancer adjuvant therapy discussions.

Abstract: Objective To identify variables within the patient-oncologist communication pattern that impact overall patient comprehension and satisfaction within the breast cancer adjuvant therapy (AT) setting. Setting and participants Fifty patients were recruited from a number of academic and community-based oncology practices. Fifteen oncologists participated. Main variables Three communication variables were identified: percentage of total utterances spoken by the patient, percentage of total physician utterances that were coded as affective (i.e. emotional), and total number of questions asked by the patient during the consultation. Knowledge and satisfaction were assessed by a variety of outcome measures, including knowledge items and satisfaction as measured by VASs, the satisfaction with decision scale and the decisional conflict scale. Results The level of patient knowledge about breast cancer and satisfaction with the clinical encounter showed a tendency to correlate with the variables measuring aspects of patient-physician communication style. Patients who spoke more or asked more questions tended to be more knowledgeable whilst patients whose physicians used more affective language tended to know less but to be more satisfied with their clinical encounter. Conclusions In order to optimize patients’ degree of comprehension and satisfaction with their breast cancer adjuvant therapy, physicians need to increase their affective participation in clinical encounters whilst encouraging patients to ask questions and to actively participate in the decision-making process.

The medical visit context of treatment decision-making and the therapeutic relationship.

Abstract: The ascendance of the autonomy paradigm in treatment decision-making has evolved over the past several decades to the point where few bioethicists would question that it is the guiding value driving health-care provider behaviour. In achieving quasi-legal status, decision-making has come to be regarded as a formality largely removed from the broader context of medical communication and the therapeutic relationship within which care is delivered. Moreover, disregard for individual patient preference, resistance, reluctance, or incompetence has at times produced pro forma and useless autonomy rituals. Failures of this kind, have been largely attributed to the psychological dynamics of the patients, physicians, illnesses, and contexts that characterize the medical decision. There has been little attempt to provide a framework for accommodating or understanding the larger social context and social influences that contribute to this variation. Applying Paulo Freire's participatory social orientation model to the context of the medical visit suggests a framework for viewing the impact of physicians' communication behaviours on patients' capacity for treatment decision-making. Physicians' use of communication strategies can act to reinforce an experience of patient dependence or self-reliance in regard to the patient-physician relationship generally and treatment decision-making, in particular. Certain communications enhance patient participation in the medical visit's dialogue, contribute to patient engagement in problem posing and problem-solving, and finally, facilitate patient confidence and competence to undertake autonomous action. The purpose of this essay is to place treatment decision-making within the broader context of the therapeutic relationship, and to describe ways in which routine medical visit communication can accommodate individual patient preferences and help develop and further patient capacity for autonomous decision-making.

A qualitative study of women's views about how health professionals communicate about infant feeding.

Abstract: OBJECTIVE: To look at how communication by health professionals about infant feeding is perceived by first time mothers. DESIGN: Qualitative semi-structured interviews early in pregnancy and 6-10 weeks after birth. SUBJECTS AND SETTING: Twenty-one white, low income women expecting their first baby were interviewed mostly at home, often with their partner or a relative. RESULTS: The personal and practical aspects of infant feeding which were important to women were seldom discussed in detail in ante-natal interviews. In post-natal interviews women described how words alone encouraging them to breastfeed were insufficient. Apprenticeship style learning of practical skills was valued, particularly time patiently spent watching them feed their baby. Women preferred to be shown skills rather than be told how to do them. Some felt pressure to breastfeed and bottle feeding mothers on post-natal wards felt neglected in comparison. Women preferred their own decision-making to be facilitated rather than being advised what to do. Some women experienced distress exposing their breasts and being touched by health professionals. Continuity of care and forming a personal relationship with a health professional who could reassure them were key factors associated with satisfaction with infant feeding communication. CONCLUSIONS: The infant feeding goal for many women is a contented, thriving baby. In contrast, women perceive that the goal for health professionals is the continuation of breastfeeding. These differing goals can give rise to dissatisfaction with communication which is often seen as 'breastfeeding centred' rather than 'woman centred.' Words alone offering support for breastfeeding were often inadequate and women valued practical demonstrations and being shown how to feed their baby. Spending time with a caring midwife with whom the woman had developed a personal, continuing relationship was highly valued. Women were keen to maintain ownership, control and responsibility for their own decision-making about infant feeding.

The use of research-based theatre in a project related to metastatic breast cancer

Abstract: Research-based theatre represents an innovative approach to disseminating the results of qualitative studies In this paper, we provide a rationale for the importance of research-based theatre and also review previous work that has been done in the area We then describe our experience in transforming research data into a dramatic production, Handle with Care? This production was based on two studies - one with women with metastatic breast cancer, and the other with medical oncologists treating breast cancer patients Results from ongoing assessment of the project are reported We discuss some of the factors related to the success of Handle with Care? and reflect on what has been learned about the process of developing dramatic pieces related to serious illness

Public perceptions about low back pain and its management: a gap between expectations and reality?

Abstract: OBJECTIVE: To compare public perceptions and patient perceptions about back pain and its management with current clinical guidelines. DESIGN: A survey using a quota sampling technique. SETTING: On-the-street in South Derbyshire in the UK. SUBJECTS: 507 members of the general population aged between 20 and 60 years, including a representative subsample of 40% who had experienced back pain in the previous year. SURVEY: To test knowledge and perceptions of back pain and its best management using statements based on The Back Book which was produced in conjunction with the Royal College of General Practitioners and based on best available evidence. In addition expectations of back pain management and outcome were investigated. RESULTS: Forty percent of this sample had experienced back pain during the previous year, more than half of whom had consulted their GP. More than half believed the spine is one of the strongest part of the body, but nearly two thirds incorrectly believed that back pain is often due to a slipped disc or trapped nerve. Two thirds expected a GP to be able to tell them exactly what was wrong with their back, although slightly fewer among those who had consulted. Most expected to have an X-ray, especially if they had consulted. Most recognised that the most important thing a GP can do is offer reassurance and advice. The responses were not related to age, gender or social class. Those who had consulted appeared to have slightly more misconceptions: this could be partly due to people with more severe problems or more misconceptions being more likely to consult, but also suggests either that GPs are still giving inaccurate information or at least failing to correct these misconceptions. CONCLUSIONS: The problem of managing back pain might be reduced by closing the gap between the public's expectations and what is recommended in the guidelines through the promotion of appropriate health education messages. Further professional education of GPs also appears to be needed to update them in the most effective approach to managing back pain.

Development and evaluation of a decision aid for patients with stage IV non-small cell lung cancer

Abstract: Although guidelines for treating stage IV non-small cell lung cancer suggest that the patient's values should be considered in decision-making, there are no practical tools available to assist them with their decision-making. OBJECTIVE: To develop and evaluate a decision aid that incorporates patient values. DESIGN AND SAMPLE: (1) Before/after evaluation with patients referred to a regional cancer centre. (2) Mailed survey of thoracic surgeons and respirologists in Ontario. INTERVENTION: An audio-tape guided individuals to review a booklet describing stage IV non-small cell lung cancer, its impact and possible coping strategies, treatment options, benefits and risks, and examples of the decision-making of others. Patients then used a worksheet to consider and communicate personal issues involved in the choice, including: personal values using a 'weigh-scale'; questions; preferred role in decision-making; and predisposition. MEASURES: (1) Patient questionnaires eliciting knowledge, the decision, decisional conflict and acceptability of the decision aid. (2) Physician questionnaires eliciting attitudes toward the decision aid. RESULTS: (1) Twenty of 30 patients used the aid in decision-making. Users thought that the aid was acceptable and significantly improved their knowledge about options and outcomes (P < 0.001), and reduced their decisional conflict (P < 0.001). (2) The majority of the 29 physicians who reviewed the decision aid found it acceptable, were comfortable providing it to patients and said that they were likely to use it. CONCLUSION: The decision aid is a useful and acceptable adjunct to personal counselling.

Clinical decision-making in the context of chronic illness.

Abstract: This paper develops a framework to compare clinical decision making in relation to chronic and acute medical conditions. Much of the literature on patient-physician decision making has focused on acute and often life-threatening medical situations in which the patient is highly dependent upon the expertise of the physician in providing the therapeutic options. Decision making is often constrained and driven by the overwhelming impact of the acute medical problem on all aspects of the individual's life. With chronic conditions, patients are increasingly knowledgeable, not only about their medical conditions, but also about traditional, complementary, and alternative therapeutic options. They must make multiple and repetitive decisions, with variable outcomes, about how they will live with their chronic condition. Consequently, they often know more than attending treatment personnel about their own situations, including symptoms, responses to previous treatment, and lifestyle preferences. This paper compares the nature of the illness, the characteristics of the decisions themselves, the role of the patient, the decision-making relationship, and the decision-making environment in acute and chronic illnesses. The author argues for a different understanding of the decision-making relationships and processes characteristic in chronic conditions that take into account the role of trade-offs between medical regimens and lifestyle choices in shaping both the process and outcomes of clinical decision-making. The paper addresses the concerns of a range of professional providers and consumers.

Practical issues in assisting shared decision-making.

Abstract: To facilitate treatment decision-making, one aims to provide information, present it in a way that makes it as easy as possible to understand, and to help the decision-maker through the cognitive processes that result in a treatment decision. Decision aids aim to accomplish just these goals and this paper identifies practical issues that we have encountered in creating a decision aid for men with early stage prostate cancer. We highlight the results of studies we carried out to provide an empirical basis for the decision aid that we were developing. Several of the studies were designed to identify what information key players (health professionals, patients and family members) thought was important for the decision-making process. Another investigation studied methodological considerations in identifying important information. The final study focused on presentation issues. These studies, designed to explore what information was considered important, found great variability among both health care professionals involved in treating patients with prostate cancer (urologists, radiation oncologists, nurses in cancer clinics, and radiation technologists) and among the patients, themselves. The studies also showed that not all information contained within a typical category is of equal importance. A methodological study showed that the information that patients deem to be important to their decision depends on whether they are rating the information that could be provided, or questions that could be answered. Finally, presentation studies showed that the various formats used in presenting quantitative information are processed with differing degrees of accuracy and ease. Each of the above results has implications for those creating decision aids; these implications are highlighted.

Challenges of participatory research: reflections on a study with breast cancer self-help groups.

Abstract: OBJECTIVE: To review and discuss issues related to participatory research, as they apply within the arena of cancer control. DESIGN: A participatory research study with breast cancer self-help groups is referred to for description and discussion purposes. That study employed primarily individual and group interviews to assess benefits and limitations of self-help groups. SETTINGS: Four breast cancer self-help groups in Ontario communities provided the core involvement in the participatory research project. RESULTS: The values and practices of mainstream academic research often conflict with those of research emphasizing participation and control of communities under study, leading to a variety of challenges for the latter approaches. Practical constraints faced by many community groups have important implications for participatory research approaches. CONCLUSIONS: A balance needs to be found for participatory research within cancer control - one that ensures that the core aims of participatory research are maintained, while simultaneously acknowledging the various challenges that make a fully participatory project unrealistic. Steps can be taken to achieve a workable balance.

Involving patients in decisions regarding preventive health interventions using the analytic hierarchy process.

Abstract: Practice guidelines that recommend active patient involvement in decisions about preventive health interventions are becoming increasingly common. These decisions frequently involve diAcult trade-oAs between competing risks and benefits that require easily accessible information about the expected outcomes, superb doctor‐patient communication, and eAective integration of objective outcome data with individual values and preferences. Successful implementation of recommendations for shared decision-making in preventive health care will require the development of eAcient methods for making these complex decisions in busy practice settings. This article describes how the analytic hierarchy process, a multiple criteria decision-making method, could facilitate successful implementation of shared decision-making regarding preventive health care in clinical practice. The method is illustrated using recent guidelines for colorectal cancer screening for average risk patients issued by the American Gastroenterological Association.

Lessons learned from the Decision Board: a unique and evolving decision aid

Abstract: One session of the conference was devoted to the presentation of different types of decision aids. This paper reports the experience and lessons learned through the development and use of the Decision Board. This is a uniquely interactive decision aid administered by the clinician during the medical consultation. The instrument has been developed in a number of clinical contexts, primarily regarding treatment options for cancer patients. Studies have shown the instrument to improve patient understanding and facilitate the shared decision-making process. Randomized trials are ongoing, evaluating the addition of the Decision Board to the traditional medical consultation. The instrument continues to evolve to meet patients' need for information and flexibility in presentation. Computer-based versions of the Decision Board are currently being developed.

Does provision of an evidence-based information change public willingness to accept screening tests?

Abstract: Objective To investigate whether the willingness of the general population to undergo a screening test of questionable effectiveness for pancreatic cancer is influenced by the quality and the extent of the information provided. Design Randomised study. Setting Switzerland. Participants Representative sample (N=1000) of the general population aged over 20. Interventions Participants were randomly allocated into two groups (N=500 each), with one group to receive basic and the other extended quality of information. The information was presented in two hypothetical scenarios about implicit and explicit benefits and adverse events of the screening test. Response rates were, respectively, 80.2% (N=401) and 93.2% (N=466). Main outcome measures Stated willingness to undergo the screening test. Results Out of the 401 participants receiving the basic information scenario, 241 (60%) stated their willingness to accept the test, as compared to the 63/466 (13.5%) exposed to the extended one (P < 0.001). After adjusting for respondent characteristics through a logistic regression model, the ‘information effect’, expressed in terms of odds-ratio (OR), shows that provision of additional information was related to a 91% (OR 0.09; 95CI: 0.07 – 0.13) relative reduction in the likelihood of accepting the screening test. Conclusion The quality and the extent of the information provided about the implicit and explicit benefits and adverse events on hypothetical scenarios of a screening test may dramatically change the willingness of people to participate in the testing. This study suggests that provision of full information on the yield of health care interventions plays an important role in protecting the public from being exposed to procedures of questionable effectiveness.

'Do I don't I call the doctor': a qualitative study of parental perceptions of calling the GP out-of-hours.

Abstract: The purpose of this study was to investigate how parents use the GP out-of-hours service. There was a lack of information about how parents managed childhood illness and what strategies they put in place to help them to cope before calling the GP. The investigation of parental perceptions was based on a qualitative design using in-depth interviews of 29 families from a semi-rural location in the south-east of England. All parents said they found dealing with a sick child out-of-hours stressful and were concerned to make the right decision for their child. Furthermore, parents usually employed a reasonable strategy in attempting to manage the child’s illness. This study demonstrated that the decision to call the doctor was not taken lightly. Many parents had implemented useful strategies prior to calling the doctor. However, most parents were also aware of their limitations and feared doing the wrong thing. It would seem that on occasion this fear combined with factors such as a lack of social support and loss of parental confidence resulted in calling the doctor out of hours to seek ‘peace of mind’. A rethink is needed among health professionals about the ‘problem’ of out-of-hours calls. GPs could actively seek to empower parents by educating them about minor illness during visits and consultations. It is not enough to offer reassurance to parents that their children are fine. Health visitors and other health professionals who come into contact with young families may help to educate and empower.

Eliciting patients' preferences for adjuvant chemotherapy in breast cancer: development and validation of a bedside decision-making instrument in a French Regional Cancer Centre.

Abstract: In developed countries, the physician-patient relationship is moving from a paternalistic model to new decision-making models that take patient preferences into account. OBJECTIVES: Our aim was to develop a Decision Board (DB) and to test its acceptability in a French Regional Cancer Centre regarding the decision on whether or not to use chemotherapy after surgery in postmenopausal women with breast cancer. This paper presents the development process for this instrument and reports the pretesting phase, as well as the corresponding results. METHODS: A working group was created with oncologists, psychologists and economists. Following the first phase, i.e. the development process, a first version of the instrument was presented to health professionals. Their feedback led to important modifications of the instrument. The DB was then presented to experienced patients, which resulted in slight changes. The second phase consisted of pretesting the comprehension, internal and across-time consistency of the DB on healthy volunteers. RESULTS: The DB was pretested in a group of 40 healthy volunteers. Eighteen respondents chose chemotherapy and 22 chose not to have chemotherapy. Comprehension rates were very high (>/=87.5%). Internal consistency was assessed considering option attitudes based on outcomes and option attitudes based on process. Women shifted their choices in a predictable way. Across-time consistency was appraised using the test-retest method with Visual Analog Scales. The Intraclass Correlation Coefficient was 0.97. DISCUSSION-CONCLUSION: Due to cultural differences, the DB developed in our French Cancer Centre is quite different from the DBs previously developed elsewhere. Our instrument showed good comprehension and consistency properties, which are corroborated by the DB literature. Whether our DB is acceptable for patients with breast cancer must still be tested. Patients' reactions will tell us which type of decision-making model is at work. Further research is needed in order to explore the shared decision-making process and clarify the concept.

Supporting and resourcing treatment decision-making: some policy considerations.

Abstract: This paper considers some of the policy implications of issues raised during a conference about treatment decision-making in the clinical encounter held in Hamilton, Ontario in May 1999. Policies promoting patient participation in treatment decision-making need to be flexible enough to ensure that they are appropriate across the range of contexts in which health care decisions are made and acceptable to people with diverse preferences and abilities. They should also be formulated in consideration of other health policies and of available resources. Policies of informing people and involving them in decisions about their care are unlikely to be simple to implement. Various strategies might be needed to support them. These include the development of appropriate skills among health professionals and in the general population, the use of interventions to encourage people to play more active roles in decisions about their health care, the provision of decision aids for people facing specific decisions and the provision and accreditation of more general information resources and services. If information and other facilitators of patient participation in decision-making are seen as integral to good quality health care, then funding should be made available for them. This will, however, have opportunity costs. Policy makers' decisions about how much health care funding should be invested in which strategies should be underpinned by good research evidence about the effects that different types of intervention have on a range of outcomes for individuals, health care systems and populations. The knowledge on which current policies are based is limited. The development of future policies will be enhanced if policy makers invest in critical conceptual thinking, reflective practice, imaginative development work and good quality evaluative research.

A treatment trade-off based decision aid for patients with locally advanced non-small cell lung cancer

Abstract: Purpose To describe the structure and use of a decision aid for patients with locally advanced non-small cell lung cancer (LA-NSCLC) who are eligible for combined-modality treatment (CMT) or for radiotherapy alone (RT). Methods The aid included a structured description of the treatment options and trade-oA exercises designed to help clarify the patient’s values for the relevant outcomes by determining the patient’s survival advantage threshold (the increase in survival conferred by CMT over RT that the patient deemed necessary for choosing CMT). Additional outcome measures included each patient’s strength of treatment preference, decisional conflict, objective understanding of survival information, decisional role preference, and evaluation of the aid itself. Results Twenty-five patients met the eligibility criteria for study. Of these, seven declined the decision aid because they had a clear treatment preference (four chose CMT and three chose RT). The remaining 18 participants completed the decision aid; 16 chose CMT and two chose RT. All 18 patients wished to participate in the decision to some extent. All patients reported that using the decision support was useful to them and recommended its use for others. No patient or physician reported that the aid interfered with the physician-patient relationship. Patients’ 3-year survival advantage thresholds, and their median survival advantage thresholds, were each strongly correlated with their strengths of treatment preference (qa 0.80, P < 0.001 and qa 0.77, P < 0.001, respectively). For all but one patient, either their 3-year or median survival threshold was consistent with their final treatment choice. Eight patients reported a stronger treatment preference after using the decision aid. Conclusions We conclude that a treatment trade-oA based decision aid for patients with locally advanced non-small cell lung cancer is feasible, that it demonstrates internal consistency and convergent validity, and that it is favourably evaluated by patients and their

Reassurance through surveillance in the face of clinical uncertainty: the experience of women at risk of familial breast cancer.

Abstract: Objective To identify the main issues raised by clinicians when they are counselling women at risk of breast cancer and explore the response of a group of women 1 year after counselling. Design A qualitative study which involved the thematic analysis of a series of transcripts from clinical consultations, semi-structured interviews and focus groups. Participants First, a series of clinical consultations (n=153), involving seven clinicians, were randomly selected during a Medical Research Council funded study of genetic assessment (TRACE). Second, a group of women (n=43), involved in the TRACE study, were interviewed, or joined a focus group, 1 year after their genetic assessment. Conclusions There was evidence that, although the clinical consultations were embedded with multiple messages of uncertainty, the women’s accounts did not reflect this. The women talked about the reassurance they had found because they had met with an expert and become members of the surveillance society. The authors highlight the tension that exists because of the difference between lay expectations about on-going surveillance and the realities of collective service provision.

Measurement of consumer preference for treatments used to induce labour: a willingness-to-pay approach.

Abstract: AIM: The purpose of the study was to assess the acceptability to consumers of two methods of induction of labour using a willingness-to-pay (WTP) approach. The methods compared were amniotomy plus oxytocin and prostaglandin E2 vaginal gel, followed by oxytocin if necessary. METHODS: A description of each method was presented, in questionnaire format, to pregnant women attending a public hospital ante-natal clinic. Women were asked to choose one of the two treatments, then give a valuation in dollar terms for both their preferred treatment and the alternative. RESULTS: It was found that 73.7% of patients preferred gel. The mean maximum WTP for amniotomy plus oxytocin was Aus$133 while that for gel was Aus$178 (P=0.0001). Those who chose amniotomy plus oxytocin were WTP 90% more for their preferred treatment compared with the alternative (Aus$180 vs. Aus$95). Similarly, those who preferred gel were WTP 90% more for their preferred treatment compared with the alternative (Aus$222 vs. Aus$119). CONCLUSION: Consumers were able to assess drug information provided on the two therapies, make an informed choice and to value that choice. Information obtained in this way, combined with information on costs, could be used in policy decision-making.

The role of health professionals in informing cancer patients: findings from The Teamwork Project (phase one).

Abstract: BACKGROUND: The Teamwork Project is managed by the National Cancer Alliance (NCA) and funded jointly by the National Lottery Charities Board and the Department of Health. The aim of the Project is to produce a Personal Information File to help people with cancer work in partnership with health professionals. Phase one was carried out between September 1998 and April 2000. The Teamwork Project arose as a direct result of the NCA report, 'Patient-Centred Cancer Services'? - What Patients Say,1 one of a number of studies that found people with cancer want to be involved in decisions about their treatment and care. The study also found that, for this involvement to be successful, health professionals need to support patients in accessing information relevant to their individual needs and help them understand and apply that information. The focus of The Teamwork Project is to help provide a practical solution to meeting this information need. APPROACH: The Teamwork Project has used a wide-range of methods including literature appraisal; patient questionnaires; focus groups; semi-structured interviews and a consultation exercise. Throughout the Project there has been on-going involvement from both patients and professionals. CONCLUSIONS: There may be a divergence of views among health professionals in cancer services regarding their role as providers of patient information. Consequently, there may also be a significant variance in how their patients are informed in practice. This finding needs to be validated and the reasons for this understood if the full potential of the forthcoming National Health Service (NHS) Cancer Information Strategy is to be realised.

The use of patients' stories by self-help groups: a survey of voluntary organizations in the UK on the register of the College of Health.

Abstract: Objective First-hand accounts of illness experience are believed to provide important insights for other patients and their carers. We report the results of a survey that explored how patients’ stories are being collected and used by self-help and voluntary groups. Methods The annual College of Health survey contacts 2 458 addresses, which includes many self-help groups and voluntary associations. A brief questionnaire for the self-help groups on the register was attached to the summer 1999 survey on behalf of the DIPEx (database of individual patient experience) project. Results DIPEx received replies from 309 organizations representing a wide range of interests and conditions. These indicated that 202 (65%) of the groups currently use patients’ stories in various ways. A further 59 (19%) of the groups reported that although they are not currently using them, they would like to in the future. Organizations that use patients’ stories were invited to describe how they use them and provide examples, if applicable. Content analysis of the free text descriptions revealed 22 distinct uses among the 202 organizations using patient stories. The most frequent uses are the inclusion of patient stories in interviews or articles for the group newsletter (74 or 37%) and the use of stories for inclusion in newspaper articles or media broadcasts (31 or 15%). Some form of database of patients’ stories was maintained by 23 groups (12%). Conclusions These findings suggest that patients’ stories are widely collected and used to support a wide range of the recognized functions of self-help and voluntary groups. This is encouraging to the DIPEx project’s efforts to collect and analyse accounts of illness experience, which will be presented with evidence-based information about the effects of treatments.

Regulated competition and citizen participation: lessons from Israel.

Abstract: OBJECTIVE: To investigate the relationship between health system structure and citizen participation, in particular whether increased reliance on competition encourages or depresses citizen involvement. SETTING: The case of Israel's ongoing health reform, based on regulated competition among sick funds, is examined. DESIGN: Interviews with government officials and representatives of consumer groups; analysis of policy documents, judicial rulings, public surveys and journalistic accounts. RESULTS: The Israeli reform is based in large measure on a regulated competition model, in which citizens have free choice among highly regulated competing sick funds. At the same time, the reform process has been accompanied by legal, institutional and political frameworks, as well as significant interest group activity, all aimed at increasing public input into processes of health policy making and implementation. The Israeli case, it is argued, lends support to the proposition that citizen participation (voice) and individual choice (exit) are complementary, rather than alternative, modes of ensuring citizen influence over health services. The question is whether the development of multiple avenues for citizen involvement represents disarray or a healthy social learning process regarding the running of the health system. CONCLUSION: This paper expresses cautious optimism that citizen participation is a projection of a healthy social learning process, and suggests directions for public policy to encourage this outcome.

Life after hospital closure: users' views of living in residential 'resettlement' projects. A case study in consumer-led research.

Abstract: OBJECTIVE: To conduct a user-led and focused study of the views and experiences of former psychiatric hospital patients in community-based residential projects four years after hospital closure. The aims of the study were to assess residents' views about their current living arrangements, their opportunities to give their views and their interest in a formal user-group such as a residents' council or citizen advocacy scheme. DESIGN: A small-scale, qualitative study designed to enable users to voice their own views and experiences in their own words, conducted by a project group of psychiatric service users/survivors. SETTING AND PARTICIPANTS: All eight residential 're-provision' projects in the area were included, with a total potential sample of 65 residents. All residents were invited to take part and a total of 26 were interviewed, although a larger number of residents together with residential care staff took part in initial 'house' meetings to discuss the study. METHODS: Semi-structured, open-ended interviews with all residents willing to participate, researcher participation in 'house meetings', researchers' personal reflection and discussion. RESULTS AND CONCLUSIONS: On the whole, residents were content with community living arrangements and preferred these to hospital, although levels of satisfaction varied across different residential projects. Residents lacked awareness of rights to and means of voicing concerns and making choices about major issues in their lives. They showed greater interest in individualized rather than group advocacy. Ideally, research and evaluation, to be truly user-focused, should be long-term and continuous in order to involve participants more fully, and should anticipate the structures and processes needed to act on findings.

Using focus groups to seek the views of patients dying from cancer about the care they receive.

Abstract: PURPOSE: The prime purpose of the study was to investigate whether focus groups were a practical way of seeking the views of dying people and whether the information collected added to that collected by more established methods. DESIGN: A sample frame of Macmillan nurse patients was collated from which three cluster samples were randomly selected to participate in focus groups. The focus groups were structured with an experienced facilitator and recorder to answer three key questions. SETTING AND PARTICIPANTS: Patients of Macmillan nurses in three NHS Trusts in West Yorkshire who were living at home with incurable cancer. They were aware of their condition and were willing to participate. MAIN VARIABLES STUDIED: The three key questions were; what kind of help are you currently receiving? What sort of help do you want? Of the kind of help you are receiving what kind is most important to you? RESULTS: 17 patients participated in three focus groups. Participants were generally fairly able and living with spouses or relatives. They were of varying age with different types and duration of cancer. They were receiving a range of health and social services of varying importance to them. More help was particularly wanted with support for daily living, support from specialist cancer nurses, help getting out and with housework. Macmillan nurses and general practice services were highly rated in some but not all three trust areas. CONCLUSIONS: We propose that focus groups are a practical way of collecting information about dying patients that can complement other sources of information in planning and auditing the provision of care.

Enhancing prevention in primary care: are interventions targeted towards consumers’ and providers’ perceived needs?

Abstract: Objective To explore perceived barriers to the implementation of prevention guidelines, with a particular interest to perceived information needs from the point of view of health professionals and consumers. Study Design Focus group. Setting and Participants Eight focus groups were held in three Canadian cities: three with consumer, three with family physician, and two with primary care nurses. Analysis Inductive analysis based on transcribed interviews. The material was analysed by two of the investigators. Agreement on interpretation was checked independently by three other researchers on 10% of the material. Results Lack of motivation, discontinuity of care and lack of adequate remuneration were perceived as the strongest barriers to prevention implementation. Computerized information management systems were not perceived by physicians and nurses as strong facilitating factors. Consumers expressed strongly a need for information on non-traditional preventive interventions. Physicians and nurses expressed a need for patient education material more than for practice guidelines. Research evidence was not considered as the first criteria to judge the value of preventive information. Conclusions Evidence-based medicine has triggered a massive effort to develop technologies to support the dissemination of evidence-based information on the assumption that poor access to such information is an important barrier to implementation of effective practices. Our results suggest that such an assumption may not be correct. Providing only evidence-based information from the realm of traditional medicine will appear restrictive to most users, particularly to consumers, and may not be as valued as anticipated considering the expressed scepticism toward research evidence.

Five cases, four actors and a moral: lessons from studies of contested treatment decisions

Abstract: The case of Jaymee Bowen (child B) illustrated the conflict that may arise over treatment decisions in the National Health Service (NHS). This article reviews four further cases involving disagreement between patients and families on the one hand, and health authorities on the other, and a fifth case in which a health authority questioned the treatment decision of a medical specialist. The cases illustrate the rise of consumerism in health care and the challenge for health authorities in weighing the claims of individual patients against the needs of communities. They also demonstrate the increasing role of lawyers and the courts in resolving disputes over treatment decisions. Clinicians were closely involved in all cases, both in recommending treatment options and in serving as independent advisers when disputes arose. The findings presented here indicate that there is a need to strengthen the process of decision-making in cases of this kind and to make greater use of evidence in informing decisions. In future, decision-making needs to be characterized by openness, reason giving, an appeals procedure and regulation of the process to ensure that these conditions are met. The funders of health care also need to consider each individual in his or her own right while also using their resources for the benefit of the population as a whole.

Editorial: special conference issue.

Abstract: The type and amount of involvement that patients want in treatment decision-making is a topic of increasing interest to scholars from a variety of di€erent disciplines. Because of its importance from a clinical, research, policy and ethical perspective, we felt that it was timely to organize an international conference focusing on various dimensions of this issue. The conference entitled Treatment DecisionMaking in the Clinical Encounter was held in May, 1999. Our objective was to provide a forum for international experts to present original research, policy analyses or conceptual frameworks relating to a range of treatment decision-making issues in the clinical encounter. The 2-day conference was sponsored by the Centre for Health Economics and Policy Analysis, McMaster University (Hamilton, Ontario, Canada), the Supportive Cancer Care Research Unit, Hamilton Regional Cancer Centre (Hamilton) and the Centre for Clinical Evaluation Sciences (Toronto, Ontario). The more than 150 individuals from di€erent countries who attended the conference included clinicians, academic researchers, health care decisionmakers, consumer representatives and students. The conference opened with an original play depicting the emotions, thoughts and concerns experienced by women with breast cancer upon hearing their diagnosis for the ®rst time, and starting the treatment decision-making process with their physicians. The script was developed from actual quotes of women with breast cancer who were interviewed in a qualitative research study. This format was a unique and powerful way to disseminate research information and helped conference attendees to focus on the clinical encounter as the key decision-making context of interest at this conference. In the ®rst plenary session, Dr Debra Roter, a well known expert on physician±patient communication, set the context for exploring treatment decision-making in the clinical encounter by presenting a framework depicting di€erent physician communication styles and their impact in either enhancing or diminishing patients' capacity and comfort level in making autonomous or shared treatment decisions. In the next session di€erent approaches to treatment decision-making were presented. Dr Amiram Gafni, for example, described a framework for identifying and clarifying the meaning of a paternalistic, shared, informed and `in-between' approach to treatment decisionmaking. This paper explored the confusion in the labeling and depiction of different approaches, emphasized the dynamic nature of treatment decision-making and argued that real life treatment decision-making rarely corresponds to ideal type characterizations presented in the literature. The third session featured new empirical data from current unpublished studies on the information needs and roles of patients and physicians in treatment decision-making. The paper by Simino€, Ravdin and Colabianchi et al. for example, explored the relationship between physician and cancer patient communication