Evolving the multiple roles of 'patients' in health-care research: reflections after involvement in a trial of shared decision-making (original) (raw)
Related papers
Health expectations : an international journal of public participation in health care and health policy, 2016
Patient and public involvement and engagement (PPIE) in systematic reviews remains uncommon, despite the policy imperative for patient involvement in research. The aim of this study was to investigate the process and impact of collaborating with members of a patient Research User Group (RUG) on a systematic review about shared decision making around prescribing analgesia in primary care consultations. Five members of an established patient RUG collaborated with researchers undertaking a systematic review with narrative synthesis, through workshops held at three time-points. These addressed the following: designing the protocol, interpreting the results and planning dissemination. Support from a RUG coordinator and user support worker facilitated collaboration throughout the review process. Researchers reflected on how PPIE modified the review at each time-point. RUG members identified factors important in shared decision making around analgesic prescribing additional to those initia...
Professional centred shared decision making: Patient decision aids in practicein primary care
BMC Health Services Research, 2008
Background: Patient decision aids are increasingly regarded as important components of clinical practice that enable shared decision making (SDM) and evidence based patient choice. Despite broad acceptance of their value, there remains little evidence of their successful implementation in primary care settings. Methods: Health care practitioners from five general practice surgeries in northern England participated in focus group sessions around the themes of patient decision aids, patient and practitioner preferences and SDM. Participants included general practitioners (n = 19), practice nurses (n = 5) and auxiliary staff (n = 3). Transcripts were analysed using a framework approach. Results: We report a) practitioners' discussion of the current impetus towards sharing decisions and their perspectives on barriers to SDM, and b) the implementation of patient decision aids in practice and impediments such as lack of an evidence base and time available in consultations. Conclusion: We demonstrate two orientations to sharing decisions: practitioner-centred and patient-centred with the former predominating. We argue that it is necessary to rethink the changes required in practice for the implementation of SDM.
Health Expectations, 2004
Objective To obtain consensus on the principles and indicators of successful consumer involvement in NHS research.Design Consensus methods were used. An expert workshop, employing the nominal group technique was used to generate potential principles and indicators. A two-round postal Delphi process was used to obtain consensus on the principles and indicators.Setting and participants Participants were drawn from health, social care, universities and consumer organizations. A purposive sampling strategy was used to identify people who had experience and/or knowledge of consumer involvement in NHS research. Six researchers and seven consumers participated in an expert workshop. Ninety-six people completed both rounds of the Delphi process.Main outcome measures Consensus on principles and indicators of successful consumer involvement in NHS research.Results Eight principles were developed through an expert workshop and Delphi process, and rated as both clear and valid. Consensus was reached on at least one clear and valid indicator by which to measure each principle.Conclusions Consensus has been obtained on eight principles of successful consumer involvement in NHS research. They may help commissioners, researchers and consumers to deepen their understanding of this issue, and can be used to guide good practice.
Quality in health care, 2001
Background-Consumer involvement in clinical guidelines has long been advocated although there are few empirical accounts of attempts to do so. It is therefore not surprising that there is a lack of clarity about how and when to involve consumers and what to expect from them within the process of guideline development. Methods-The North of England evidence based guideline development programme has used four diVerent methods of consumer involvement. Results-When individual patients were included in a guideline development group they contributed infrequently and had problems with the use of technical language. Although they contributed most in discussions of patient education, their contributions were not subsequently acted on. In a "one oV" meeting with a group of patients there were again reported problems with medical terminology and the group were most interested in sections on patient education and self management. However, their understanding of the use of scientific evidence in order to contribute to a more cost eVective health care remained unclear. In a workshop it was possible to explain the technical elements of guideline development to patients who could then engage with such a process and make relevant suggestions as a consequence. However, this was relatively resource intensive. A patient advocate within a guideline development group felt confidence to speak, was used to having discussions with health professionals, and was familiar with the medical terminology. Conclusions-Consumers should be involved in all stages of guideline development. While this is possible, it is not straightforward. There is no one right way to accomplish this and there is a clear need for further work on how best to achieve it.
Patients’ Experiences of Shared Decision Making in Primary Care Practices in the United Kingdom
Medical Decision Making, 2012
Background. Shared decision making (SDM) and patient self-management support are key components of US and UK policy for chronic disease management, whereby SDM is seen as enhancing physician-patient negotiation around self-management. The WISE trial is implementing training in self-management support for primary care physicians in one UK region. This article describes preintervention levels of patient-reported SDM and explores how this varies with patient and practice characteristics. Methods. We analyzed baseline data from a cluster randomized controlled trial for 2965 patients with diabetes, chronic obstructive pulmonary disease, and irritable bowel syndrome (IBS) from 29 family practices. Patient-level measures included self-report of chronic conditions, SDM (Health Care Climate Questionnaire [HCCQ]), health status, and demographic characteristics. Area and practice characteristics included chronic disease workload and socioeconomic deprivation. Results. The mean SDM score was 75...