Abstract: Background
Public priorities for improvement often differ from those of clinicians and managers. Public involvement has been proposed as a way to bridge the gap between professional and public clinical care priorities but has not been studied in the context of quality-indicator choice. Our objective is to assess the feasibility and impact of public involvement on quality-indicator choice and agreement with public priorities.
Methods
We will conduct a cluster randomised controlled trial comparing quality-indicator prioritisation with and without public involvement. In preparation for the trial, we developed a 'menu' of quality indicators, based on a systematic review of existing validated indicator sets. Participants (public representatives, clinicians, and managers) will be recruited from six participating sites. In intervention sites, public representatives will be involved through direct participation (public representatives, clinicians, and managers will deliberate together to agree on quality-indicator choice and use) and consultation (individual public recommendations for improvement will be collected and presented to clinicians and managers). In control sites, only clinicians and managers will take part in the prioritisation process. Data on quality-indicator choice and intended use will be collected. Our primary outcome will compare quality-indicator choice and agreement with public priorities between intervention and control groups. A process evaluation based on direct observation, videorecording, and participants' assessment will be conducted to help explain the study's results. The marginal cost of public involvement will also be assessed.
Discussion
We identified 801 quality indicators that met our inclusion criteria. An expert panel agreed on a final set of 37 items containing validated quality indicators relevant for chronic disease prevention and management in primary care. We pilot tested our public-involvement intervention with 27 participants (11 public representatives and 16 professionals) and our study instruments with an additional 21 participants, which demonstrated the feasibility of the intervention and generated important insights and adaptations to engage public representatives more effectively. To our knowledge, this study is the first trial of public involvement in quality-indicator prioritisation, and its results could foster more effective upstream engagement of patients and the public in clinical practice improvement.
Trial registration: NTR2496 (Netherlands National Trial Register, www.trialregister.nl).
Abstract: BACKGROUND:Clinical practice guidelines are largely conceived as tools that will inform health professionals' decisions rather than foster patient involvement in decision making. The time now seems right to adapt clinical practice guidelines in such a way that both the professional's perspective as care provider and the patients' preferences and characteristics are being weighed equally in the decision-making process. We hypothesise that clinical practice guidelines can be adapted to facilitate the integration of individual patients' preferences in clinical decision making. This research protocol asks two questions: How should clinical practice guidelines be adapted to elicit patient preferences and to support shared decision making? What type of clinical decisions are perceived as most requiring consideration of individual patients' preferences rather than promoting a single best choice?METHODS:Stakeholders' opinions and ideas will be explored through an 18-month qualitative study. Data will be collected from in-depth individual interviews. A purposive sample of 20 to 25 key-informants will be selected among three groups of stakeholders: health professionals using guidelines (e.g., physicians, nurses); experts at the macro- and meso-level, including guideline and decision aids developers, policy makers, and researchers; and patient representatives. Ideas and recommendations expressed by stakeholders will be prioritized by nominal group technique in expert meetings.DISCUSSION:One-for-all guidelines do not account for differences in patients' characteristics and for their preferences for medical interventions and health outcomes, suggesting a need for flexible guidelines that facilitate patient involvement in clinical decision making. The question is how this can be achieved. This study is not about patient participation in guideline development, a closely related and important issue that does not however substitute for, or guarantee individual patient involvement in clinical decisions. The study results will provide the needed background for recommendations about potential effective and feasible strategies to ensure greater responsiveness of clinical practice guidelines to individual patient's preferences in clinical decision-making.
Abstract: Clinical practice guidelines (CPG) are important tools for improving patient care. Patient and public involvement is recognised as an essential component of CPG development and implementation. The Guideline International Network Patient and Public Involvement Working Group (G-I-N PUBLIC) aims to support the development, implementation and evaluation of guideline-oriented patient and public involvement programmes (PPIPs). To develop an international practice and research agenda on patient and public involvement in CPG. 56 CPG developers, researchers, and patient/public representatives from 14 different countries, were consulted in an international workshop. Recommendations were validated with G-I-N PUBLIC steering committee members. Many CPG organisations have set up PPIPs that use a range of participation, consultation and communication methods. Current PPIPs aim to improve the quality and responsiveness of CPGs to public expectations and needs, or to foster individual healthcare decisions. Some organisations use structured involvement methods, including providing training for patient and public representatives. A number of financial, organisational and sociopolitical barriers limit patient and public involvement. The paucity of process and impact evaluations limits our current understanding of the conditions under which patient and public involvement is most likely to be effective. Greater international collaboration and research are needed to strengthen existing knowledge, development and evaluation of patient and public involvement in CPG.
Abstract: BACKGROUND: Several organizations are advocating for patients' preferences to be considered in clinical practice guideline development and implementation. However, lack of agreement on the goal and meaning of this policy curtails evaluation and development of patient involvement programs. GOAL: To describe guideline developers' discourses on the goal of considering patients' preferences. METHOD: Design: Qualitative study using discourse analysis. Subjects:18 participants (patients, health professionals, and public health experts) from 2 groups of British guideline developers. Data collection and analysis: Template analysis of semi-structured individual interviews was strengthened by active search for deviant cases, team debriefing, and member checking. RESULTS: All respondents supported the idea of taking account of patients' preferences in guidelines. Divergences with the goal and meaning of considering preferences were structured in 4 discourses: (1) The Governance discourse constructs guideline development as a rational process of synthesizing population data-including evidence on patients' preferences-to maximize public health within the constraints of available resources; (2) the Informed Decision discourse aims at fostering patients' choice by providing tailored information on the risks and benefits of interventions; (3) the Professional Care discourse insists on basing professionals' recommendations on the individual characteristics of patients; (4) The Consumer Advocacy discourse argues for greater political power and influence over guideline development and clinical decision making. CONCLUSIONS: The identified discourses provide a set of hypothesis on how patient involvement programs are expected to work, which could help clarify the goals pursued by guideline organizations and anchor further evaluation efforts.
Notes: Accession Number: 19543120 Language: English. Date Created: 20090727. Update Code: 20090727. Publication Type: Journal Article; Research Support, N.I.H., Extramural; Research Support, Non-U.S. Gov't. Journal ID: 0230027. Publication Model: Print. Cited Medium: Internet
Abstract: As more complex and uncertain forms of health innovation keep emerging, scholars are increasingly voicing arguments in favour of public involvement in health innovation policy. The current conceptualisation of this involvement is, however, somewhat problematic as it tends to assume that scientific facts form a "hard," indisputable core around which "soft," relative values can be attached. This paper, by giving precedence to epistemological issues, explores what there is to know from public involvement. We argue that knowledge and normative assumptions are co-constitutive of each other and pivotal to the ways in which both experts and non-experts reason about health innovations. Because knowledge and normative assumptions are different but interrelated ways of reasoning, public involvement initiatives need to emphasise deliberative processes that maximise mutual learning within and across various groups of both experts and non-experts (who, we argue, all belong to the "publics"). Hence, we believe that what researchers might wish to know from publics is how their reasoning is anchored in normative assumptions (what makes a given innovation desirable?) and in knowledge about the plausibility of their effects (are they likely to be realised?). Accordingly, one sensible goal of greater public involvement in health innovation policy would be to refine normative assumptions and make their articulation with scientific observations explicit and openly contestable. The paper concludes that we must differentiate between normative assumptions and knowledge, rather than set up a dichotomy between them or confound them.
Abstract: Background: xD;Clinical practice guidelines (CPGs) have become increasingly used in primary care. Critics have argued that their implementation standardizes clinical practice in a way that could threaten patientsâ ability to be involved in decision-making. Few empirical studies have explored the interaction between CPGs and shared decision-making in clinical practice. xD; xD;Method: xD;The goal of the study was to explore rural physiciansâ perception of the interaction between clinical practice guidelines and shared decision-making. A semi-structured focus group interview was conducted with seventeen family physicians and residents practicing in Rouyn-Noranda, a Canadian rural town. Interviews were audiotaped and transcribed verbatim. The interpretation was guided by the template organizational style. Data analysis was performed by the principal investigator and validated using member-checking and debriefing among the research team. xD; xD;Results: xD;For some participants, CPGs should primarily help clinicians to decide on behalf of their patient and have no use in shared decision-making. However, particularly in chronic disease management, physicians expected CPGs to inform the decision-making process between clinicians and patients and facilitate shared decision-making. To do so, participants insisted that CPGs include details about risks, benefits, costs and treatment alternatives; current guidelines were considered as often lacking such information. The pressure to apply recommendations set out in CPGs was perceived as a barrier to patient participation in decision-making. xD; xD;Conclusion: Clinical practice guidelines lack a number of elements that are necessary for primary care physicians to involve patients in decision-making. To facilitate shared decision-making, CPGs should include relevant information about risks, benefits and costs of interventions.
Abstract: Background: xD;Clinical practice guidelines (CPGs) have become increasingly used in primary care. Critics have argued that their implementation standardizes clinical practice in a way that could threaten patientsâ ability to be involved in decision-making. Few empirical studies have explored the interaction between CPGs and shared decision-making in clinical practice. xD; xD;Method: xD;The goal of the study was to explore rural physiciansâ perception of the interaction between clinical practice guidelines and shared decision-making. A semi-structured focus group interview was conducted with seventeen family physicians and residents practicing in Rouyn-Noranda, a Canadian rural town. Interviews were audiotaped and transcribed verbatim. The interpretation was guided by the template organizational style. Data analysis was performed by the principal investigator and validated using member-checking and debriefing among the research team. xD; xD;Results: xD;For some participants, CPGs should primarily help clinicians to decide on behalf of their patient and have no use in shared decision-making. However, particularly in chronic disease management, physicians expected CPGs to inform the decision-making process between clinicians and patients and facilitate shared decision-making. To do so, participants insisted that CPGs include details about risks, benefits, costs and treatment alternatives; current guidelines were considered as often lacking such information. The pressure to apply recommendations set out in CPGs was perceived as a barrier to patient participation in decision-making. xD; xD;Conclusion: Clinical practice guidelines lack a number of elements that are necessary for primary care physicians to involve patients in decision-making. To facilitate shared decision-making, CPGs should include relevant information about risks, benefits and costs of interventions.
Abstract: Background: xD;Clinical practice guidelines (CPGs) have become increasingly used in primary care. Critics have argued that their implementation standardizes clinical practice in a way that could threaten patientsâ ability to be involved in decision-making. Few empirical studies have explored the interaction between CPGs and shared decision-making in clinical practice. xD; xD;Method: xD;The goal of the study was to explore rural physiciansâ perception of the interaction between clinical practice guidelines and shared decision-making. A semi-structured focus group interview was conducted with seventeen family physicians and residents practicing in Rouyn-Noranda, a Canadian rural town. Interviews were audiotaped and transcribed verbatim. The interpretation was guided by the template organizational style. Data analysis was performed by the principal investigator and validated using member-checking and debriefing among the research team. xD; xD;Results: xD;For some participants, CPGs should primarily help clinicians to decide on behalf of their patient and have no use in shared decision-making. However, particularly in chronic disease management, physicians expected CPGs to inform the decision-making process between clinicians and patients and facilitate shared decision-making. To do so, participants insisted that CPGs include details about risks, benefits, costs and treatment alternatives; current guidelines were considered as often lacking such information. The pressure to apply recommendations set out in CPGs was perceived as a barrier to patient participation in decision-making. xD; xD;Conclusion: Clinical practice guidelines lack a number of elements that are necessary for primary care physicians to involve patients in decision-making. To facilitate shared decision-making, CPGs should include relevant information about risks, benefits and costs of interventions.
Abstract: Background: xD;Clinical practice guidelines (CPGs) have become increasingly used in primary care. Critics have argued that their implementation standardizes clinical practice in a way that could threaten patientsâ ability to be involved in decision-making. Few empirical studies have explored the interaction between CPGs and shared decision-making in clinical practice. xD; xD;Method: xD;The goal of the study was to explore rural physiciansâ perception of the interaction between clinical practice guidelines and shared decision-making. A semi-structured focus group interview was conducted with seventeen family physicians and residents practicing in Rouyn-Noranda, a Canadian rural town. Interviews were audiotaped and transcribed verbatim. The interpretation was guided by the template organizational style. Data analysis was performed by the principal investigator and validated using member-checking and debriefing among the research team. xD; xD;Results: xD;For some participants, CPGs should primarily help clinicians to decide on behalf of their patient and have no use in shared decision-making. However, particularly in chronic disease management, physicians expected CPGs to inform the decision-making process between clinicians and patients and facilitate shared decision-making. To do so, participants insisted that CPGs include details about risks, benefits, costs and treatment alternatives; current guidelines were considered as often lacking such information. The pressure to apply recommendations set out in CPGs was perceived as a barrier to patient participation in decision-making. xD; xD;Conclusion: Clinical practice guidelines lack a number of elements that are necessary for primary care physicians to involve patients in decision-making. To facilitate shared decision-making, CPGs should include relevant information about risks, benefits and costs of interventions.
Abstract: Background: xD;Clinical practice guidelines (CPGs) have become increasingly used in primary care. Critics have argued that their implementation standardizes clinical practice in a way that could threaten patientsâ ability to be involved in decision-making. Few empirical studies have explored the interaction between CPGs and shared decision-making in clinical practice. xD; xD;Method: xD;The goal of the study was to explore rural physiciansâ perception of the interaction between clinical practice guidelines and shared decision-making. A semi-structured focus group interview was conducted with seventeen family physicians and residents practicing in Rouyn-Noranda, a Canadian rural town. Interviews were audiotaped and transcribed verbatim. The interpretation was guided by the template organizational style. Data analysis was performed by the principal investigator and validated using member-checking and debriefing among the research team. xD; xD;Results: xD;For some participants, CPGs should primarily help clinicians to decide on behalf of their patient and have no use in shared decision-making. However, particularly in chronic disease management, physicians expected CPGs to inform the decision-making process between clinicians and patients and facilitate shared decision-making. To do so, participants insisted that CPGs include details about risks, benefits, costs and treatment alternatives; current guidelines were considered as often lacking such information. The pressure to apply recommendations set out in CPGs was perceived as a barrier to patient participation in decision-making. xD; xD;Conclusion: Clinical practice guidelines lack a number of elements that are necessary for primary care physicians to involve patients in decision-making. To facilitate shared decision-making, CPGs should include relevant information about risks, benefits and costs of interventions.
