What information do patients need about medicines? "Doing prescribing": how doctors can be more effective.
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Attitude to Health↗
Biomedical subjects
Glyn Elwyn
Publications and source records attributed to Glyn Elwyn.
Effects of communicating individual risks in screening programmes: Cochrane systematic review.
OBJECTIVE: To assess the effects of different types of individualised risk communication for patients who are deciding whether to participate in screening. DESIGN: Systematic review. DATA SOURCES: Specialist register of the Cochrane consumers and communication review group, scientific databases, and a manual follow up of references. SELECTION OF STUDIES: Studies were randomised controlled trials addressing decisions by patients whether or not to undergo screening and incorporating an intervention with an element of "individualised" risk communication-based on the individual's own risk factors for a condition (such as age or family history). OUTCOME MEASURES: The principal outcome was uptake of screening tests; further cognitive and affective measures were also assessed to gauge informed decision making. RESULTS: 13 studies were included, 10 of which addressed mammography programmes. Individualised risk communication was associated with an increased uptake of screening tests (odds ratio 1.5, 95% confidence interval 1.11 to 2.03). Few cognitive or affective outcomes were reported consistently, so it was not possible to conclude whether this increase in the uptake of tests was related to informed decision making by patients. CONCLUSIONS: Individualised risk estimates may be effective for purposes of population health, but their effects on increasing uptake of screening programmes may not be interpretable as evidence of informed decision making by patients. Greater attention is required to ways of developing interventions for screening programmes that can achieve this.
Communication↗
Patients' voices are needed in debates on euthanasia.
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Attitude of Health Personnel↗
Measuring access to primary care appointments: a review of methods.
BACKGROUND: Patient access to primary care appointments is not routinely measured despite the increasing interest in this aspect of practice activity. The generation of standardised data (or benchmarks) for access could inform developments within primary care organisations and act as a quality marker for clinical governance. Logically the setting of targets should be based on a sound system of measurement. The practicalities of developing appropriate measures need debate. Therefore we aimed to search for and compare methods that have been published or are being developed to measure patient access to primary care appointments, with particular focus on finding methods using appointment system data. METHOD: A search and review was made of the primary care literature from 1990 to 2001, which included an assessment of online resources (websites) and communication with recognised experts. The identified methods were assessed. RESULTS: The published literature in this specific area was not extensive but revealed emerging interest in the late 1990s. Two broad approaches to the measurement of waiting times to GP appointments were identified. Firstly, appointment systems in primary care organisations were analysed in differing ways to provide numerical data and, secondly, patient perceptions (reports) of access were evaluated using survey techniques. Six different methods were found which were based on appointment systems data. CONCLUSION: The two approaches of either using patient questionnaires or appointment system data are methods that represent entirely different aims. The latter method when used to represent patient waiting times for 'routine' elective appointments seems to hold promise as a useful tool and this avoids the definitional problems that surround 'urgent' appointments. The purpose for which the data is being collected needs to be borne in mind and will determine the chosen methods of data retrieval and representation.
Appointments and Schedules↗
A 'real puzzle': the views of patients with epilepsy about the organisation of care.
BACKGROUND: Little is known about how individuals who have a diagnosis of epilepsy have experienced healthcare services or their views about how they should best be organised to meet their ongoing needs. METHODS: Focus group interviews. Individuals with epilepsy were identified in 5 practices in Wales: 90 were invited, 40 confirmed attendance and 19 individuals attended interviews in 5 groups of size 6, 5, 4, 3 and 1 (Table 2). INCLUSION CRITERIA: individuals with a confirmed diagnosis of epilepsy, aged between 18-65. The exclusion criteria were learning disability or an inability to travel to interview locations. RESULTS: The individuals in these group interviews were not 'epilepsy activists' yet they remained critical in extended discussions about the services encountered during their patient careers, wanting more information and advice about how to adapt to problems, particularly after initial diagnosis, more involvement in decision making, rapid access to expertise, preferably local, and improved communication between clinicians. A central concern was the tendency for concerns to be silenced, either overtly, or covertly by perceived haste, so that they felt marginalised, despite their own claims to own expert personal knowledge. CONCLUSIONS: Users of existing services for epilepsy are critical of current systems, especially the lack of attention given to providing information, psychosocial support and the wishes of patients to participate in decision making. Any reorganisation of services for individuals with epilepsy should take into account these perceived problems as well as try to reconcile the tension between the distant and difficult to access expertise of specialists and the local but unconfident support of generalists. The potential benefit of harnessing information technology to allow better liaison should be investigated.
Delivery of Health Care↗
Methods for incorporating patients' views in health care.
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Attitude to Health↗
Participation by clients and nurse midwives in family planning decision making in Indonesia.
In order to enhance understanding of the quality of decision making during family planning consultations in developing countries, provider competencies and client behaviors during 179 randomly selected consultations in Indonesia were assessed. Results show that family planning clients make a significant contribution to the quality of the decision-making process, most notably by identifying the problem requiring a decision, expressing their feelings about using a method, and asking questions. Client involvement may compensate for provider weaknesses, which tend to be in areas calling for interpersonal rather than technical skills. However, the programmatic ideal of informed choice has not yet been realized. Supervisors, trainers, communicators, and program managers can improve the quality of decision making by: creating opportunities for client involvement during consultations, strengthening providers' ability to fully inform clients about their options, and making providers aware of the opportunities for decision making in consultations with continuing clients.
Adolescent↗
The development of COMRADE--a patient-based outcome measure to evaluate the effectiveness of risk communication and treatment decision making in consultations.
Some instruments have been developed to evaluate 'decision effectiveness' such as the 'satisfaction with decision (SWD)' and 'decision conflict (DCS)' scales and are validated for the US context. Patients identify further outcome domains that are not fully covered in these scales. We developed a patient-based outcome measure to evaluate risk communication and decision making effectiveness, addressing these further domains and validated for use in the UK. Formulation of items was based on literature review and key informant interviews. The instrument was piloted and developed (including psychometric assessment) in the context of a trial of decision making and risk communication interventions in general practice. Patients were recruited to the trial with known atrial fibrillation, prostatism, menorrhagia or menopausal symptoms. High response rates (96% in first phase) indicated acceptability to patients. A 20 item patient-based outcome measure, with two sub-scales for 'risk communication' and 'confidence in decision', was produced. It allows for paternalistic, shared or informed choice decision making models. Usage in further studies will facilitate systematic reviews. Consequently, lessons for wider application of these interventions in practice, and policy implications regarding greater patient involvement should then be clearer.
Communication↗
Manufactured but not imported: new directions for research in shared decision making support and skills.
Significant conceptual work on shared decision making has taken place but there are still significant challenges in achieving it in routine clinical practice. This paper outlines what research has identified to date that may promote shared decision making, and the further research that is required to enable continuing progress. Greater understanding of the models of decision making and instruments to identify them in practice are still required. Specifying consumer competences, developing instruments to assess these and interventions to enhance them may also be important. Clarifying all these aspects may enable those charged with training professionals to improve the content of professional development programmes. This may be particularly important in the field of cancer treatments where the stakes are high-patients usually desire much information but their desire for involvement in decision making is more variable. The consequences of getting this balance right or wrong are significant with much to be gained or lost. Continued development and evaluation of decision aids and decision explorers that use interactive technology will also be important in identifying how to progress with consumer involvement. If we can learn these lessons, then wider implementation of shared decision making or consumer involvement may become a nearer prospect.
Clinical Competence↗
Developing a measure of patient access to primary care: the access response index (AROS).
Access to appointments in primary care is not routinely measured, and there is no one standardized method for doing so. Any measurement tool has to take account of the dynamic status of appointment availability and the definitional problems of appointment types. The aim of this study was to develop and trial a method for measuring access that is valid, reliable, quick and provides a daily longitudinal record of access on an organizational basis (not for individual clinicians). Using the results of a literature review and following discussions with clinicians and managers a tool was designed following agreed specifications. After initial adjustments of the tool a feasibility study tested the acceptability of a data collection exercise on 11 practices of varying types, over a 4- to 8-week period. The development phase led to the design of a tool named the access response index (AROS). The method was well received in the practices, with a low incidence of missed days and only one practice failing to return data. The index measures the number of days' wait to the next available appointment with any general practitioner. The inclusion in the score of urgent appointments was abandoned due to definitional problems. A 5-day moving average was chosen to represent the data in graph form to demonstrate overall trends. AROS is a useful tool usable in any practice, and our feasibility study points to it being widely acceptable in the field. Data are represented in clear graphical daily format, either just for one practice or as an anonymous composite graph with other practices in the locality.
Appointments and Schedules↗
Evolving the multiple roles of 'patients' in health-care research: reflections after involvement in a trial of shared decision-making.
OBJECTIVE: This paper offers 'consumer-led' reflections by steering group members of a patient-centred research study involving consumer advocates, patients' associations and patients, throughout the whole study, from pre- to post-study phases. ORIGINAL STUDY DESIGN: The study: 'Shared decision making and risk communication in general practice' incorporated systematic reviews, psychometric evaluation of outcome measures, and quantitative, qualitative and health economic analyses of a cluster randomized trial of professional skill development, all informed by consumer and patient engagement. SETTING AND PARTICIPANTS: The work was produced by a wide collaboration led by researchers from the Department of General Practice, University of Wales College of Medicine, Cardiff, including a consumers' advisory group and a patients' association. The study participants were 20 general practitioners from Gwent, their practice staff, and almost 800 patients at these practices. DISCUSSION: Consumers and patients contributed to several stages of the research from inception and design, securing of funding, implementation of the protocol, and interpretation and dissemination of the findings. 'Patient involvement' research initiatives that include an equally wide variety of 'user' participants as 'health-professional' participants, accountable to a 'Health in Partnership' funded project, require a user-led viewpoint to be presented and disseminated. This paper presents reflections on the processes of the research, the interpretations of study findings by the involved parties, and notes how this model is fundamental to effective research in the field of patient-centred health care if future practice, policy and research are to change.
Decision Making↗
Exploring doctor and patient views about risk communication and shared decision-making in the consultation.
BACKGROUND: There have been significant conceptual developments regarding shared decision-making (SDM) and assessments of people's hypothetical preferences for involvement in treatment or care decisions. There are few data on the perceptions of patients and professionals about SDM in actual practice. OBJECTIVE: To explore, from paired doctor-patient interviews, participants' perceptions of SDM in the consultation and the level of consensus between the participants in the consultation process. DESIGN: Qualitative analysis of semi-structured interview data. SETTING AND PARTICIPANTS: Twenty general practitioners received training packages in 'risk communication' (RC) and 'SDM' to use as tools within the consultation. Forty patients with one of four conditions, for which a range of treatment options is available, were selected. Patient/doctor pairs were interviewed separately following consultations at four stages -'baseline' [general practitioner's (GP) usual consultation style], SDM training, RC alone, and both RC and SDM training. Interviews were transcribed and analysed using NVivo software. RESULTS: Risk communication interventions by doctors appeared to result in a greater perception of decisions being made in the consultation. High levels of satisfaction with consultations were evident before application of the interventions and did not change after the interventions. Doctors' and patients' perceptions of the consultations were highly congruent at all phases of the study. CONCLUSION: Shared decision-making and RC approaches were helpful in selected consultations and showed no detrimental effects to patients. However, the use of RC and SDM made only small differences to decision-making in consultations within the population studied. Increasing patient participation may be seen as more ethically justifiable than the traditional paternalistic approach but this needs to be set against the additional training costs incurred.
Adult↗
The problematic of decision-sharing: deconstructing 'cholesterol' in a clinical encounter.
Shared decision-making is increasingly advocated as a means of interacting with patients but there is also a widely accepted view that many factors will militate against this ideal. While some patients may not wish to take on the responsibility of decision-making, it is also evident that many find it difficult to assimilate probabilities about future events and overestimate the likelihood of some outcomes, especially when terms such as 'stroke', 'bleeding' and 'heart attack' are used in consultation and bring with them emotional connotations and reactions. Under such circumstances, should clinicians portray risks as best they can, in the hope that even a marginally improved understanding will be an improvement on unilateral professional decision-making? Or, conversely, should they 'guide' the decision process, acting in a way that is known as 'professional agency'? Developing some perspectives put forward in recent work by the authors and applying it to a distinct clinical context, this paper will provide (i) a discourse analytic exploration of a single extended example from clinical practice employing aspects of Bakhtin's theory of dialogism, and (ii) a discussion and summary of what we can learn from this analysis in the context of shared decision-making and risk communication.
Aged↗
Error and safety in primary care: no clear boundaries.
This paper examines the notions of adverse events, error, critical incidents and safety from the specific viewpoint of primary care. We conclude that each term can be defined, but existing work which we reviewed uses many of the terms interchangeably. We recognise that trying to access medical error objectively within primary care can be problematic. Regardless of definitions, reflection on critical incidents, adverse events or other notable events is important, but requires time and resources to be conducted effectively.
Conflict of Interest↗
Organizing palliative care for rural populations: a systematic review of the evidence.
BACKGROUND: Palliative care services have developed mostly in urban areas. Rural areas typically are characterized by the lack of well-organized services, with primary care professionals, specifically GPs and community nurses, having to undertake most of the palliative care. Little is known, however, either of their views or of how best to organize palliative care in rural areas. OBJECTIVE: The aim of this study was to conduct a systematic literature review of studies that have examined the organization of rural palliative care and the views of professionals in rural areas. METHOD: Six electronic databases were searched for published studies between 1991 and 2001. Articles had to match against (i). MeSH or keyword terms relating to palliative, terminal or end of life care; and (ii). MeSH or keyword terms relating to rural. A data extraction framework was designed and used systematically by two reviewers to consider research question and method, sample characteristics, selection and size, study quality, summary results and implications. RESULTS: Twenty-six studies were identified. These were mostly questionnaire surveys and reports, and three qualitative studies. No randomized controlled studies or cohort studies were identified. Education and strategic issues were dominant research questions. Both the sample numbers and response rates in the surveys were variable. The qualitative studies had methodological strengths and elicited important views from nurses, carers and families. GPs were, however, unrepresented. Whilst the role of primary care emerged as an important theme, primary care professionals reported difficulties in obtaining education and training. There were also reported problems in symptom control and in the management of emotional issues such as bereavement counselling. Difficulties were also described in accessing specialist services such as hospices, and families were reported as having problems in accessing information. Developments in information technology such as telemedicine were seen as possible solutions to some of the problems. CONCLUSIONS: There is little published work on this topic. Most of the work identifies problems in the delivery of palliative care in rural areas. Whilst primary care professionals are seen as having a key role, there is a need to discover both their views and their needs in this field.
Attitude of Health Personnel↗
Use of hermeneutic research in understanding the meaning of desire for euthanasia.
The philosophy of palliative care is holistic, paying attention to the multidimensional needs of the terminally ill in promoting quality of life and relieving suffering. These needs have to be viewed within their cultural, temporal and social contexts. Thus in conducting patient need-based research, the patients' perspectives are vital data in providing intimate insight into the core issues of any phenomenon under study. This paper aims to illustrate the usefulness of hermeneutic philosophy in palliative care research, as demonstrated in a study to understand the meaning of desire for euthanasia directly from the terminally ill. Two particular aspects of the study are emphasized, namely the research methodology and research process, rather than its findings regarding the meaning of desire for euthanasia. Hermeneutic philosophy parallels that of palliative care, as it also values human experience and social contexts. This approach allows in-depth understanding into a phenomenon in a humane and holistic manner, with adherence to methodological and scientific rigour. The process of hermeneutic interpretation can also promote evidence-based reflective practice. The adoption of a hermeneutic attitude in clinical practice can refine professional self-development in the art of communication and caring.
Attitude to Death↗
Appraisal of family doctors: an evaluation study.
BACKGROUND: Appraisal has evolved to become a key component of workforce management. However, it is not clear from existing proposals for appraisal of doctors whether employers, health authorities or primary care organisations should take responsibility for appraisal processes. AIMS: To evaluate the introduction of a pilot peer appraisal system in general practice and to gain insight into the reactions of appraisers and doctors. DESIGN OF STUDY: Semi-structured telephone interviews combined with participant surveys and documentary analysis. SETTING: Five health authorities in Wales. PARTICIPANTS: General practitioners (GPs) appointed as appraisers and volunteer practitioners (doctors). METHOD: Twenty-six appraisers were appointed and given training in the appraisal process, each appraising an average of eight individuals. Appraisers and appraised doctors participated in semi-structured telephone interviews and completed separate participant questionnaires. RESULTS: GPs willingly undertook peer appraisal in a volunteer-based pilot study where participation was recompensed. The majority of participating clinicians were positive, with appraisers reporting the most gain. Appraisers were enthusiastic, provided the process remained non-judgemental and did not threaten or burden their colleagues. Appraised doctors were less enthusiastic but the most significant perceived benefit was the opportunity to reflect on individual performance with a supportive colleague. There were, however, repeated concerns about time, confusion with revalidation and personal development plans, worries about including health and probity queries, and an opinion that the process would be entirely different if conducted with non-volunteers or by representatives of 'management'. CONCLUSION: This study illustrated three fundamental problems for appraisal systems in general practice. First, there is as yet no organisational hierarchy in general practice. Perhaps the aggregation of practices into primary care organisations will generate a hierarchy. Second, the question of who conducts appraisals then becomes pertinent; this study illustrates a professionally-led peer appraisal model. Third, the spectre of summative assessment causes problems in appraisal schemes. Typically, only mutually agreed summaries are kept for future use in appraisal systems (for example, for promotion or discipline). So the proposal to use GP annual appraisal documentation as the basis of a summative 'revalidation' exercise is at odds with orthodox personnel practice, which regards appraisal as a formative process.
Adult↗