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1.  A patient-centered network approach to multidisciplinary-guideline development: a process evaluation 
Background
Guideline development and uptake are still suboptimal; they focus on clinical aspects of diseases rather than on improving the integration of care. We used a patient-centered network approach to develop five harmonized guidelines (one multidisciplinary and four monodisciplinary) around clinical pathways in fertility care. We assessed the feasibility of this approach with a detailed process evaluation of the guideline development, professionals’ experiences, and time invested.
Methods
The network structure comprised the centrally located patients and the steering committee; a multidisciplinary guideline development group (gynecologists, physicians, urologists, clinical embryologists, clinical chemists, a medical psychologist, an occupational physician, and two patient representatives); and four monodisciplinary guideline development groups. The guideline development addressed patient-centered, organizational, and medical-technical key questions derived from interviews with patients and professionals. These questions were elaborated and distributed among the groups. We evaluated the project performance, participants’ perceptions of the approach, and the time needed, including time for analysis of secondary sources, interviews with eight key figures, and a written questionnaire survey among 35 participants.
Results
Within 20 months, this approach helped us develop a multidisciplinary guideline for treating infertility and four related monodisciplinary guidelines for general infertility, unexplained infertility, male infertility, and semen analysis. The multidisciplinary guideline included recommendations for the main medical-technical matters and for organizational and patient-centered issues in clinical care pathways. The project was carried out as planned except for minor modifications and three extra consensus meetings. The participants were enthusiastic about the approach, the respect for autonomy, the project coordinator’s role, and patient involvement. Suggestions for improvement included timely communication about guideline formats, the timeline, participants’ responsibilities, and employing a librarian and more support staff. The 35 participants spent 4497 hours in total on this project.
Conclusions
The novel patient-centered network approach is feasible for simultaneously and collaboratively developing a harmonized set of multidisciplinary and monodisciplinary guidelines around clinical care pathways for patients with fertility problems. Further research is needed to compare the efficacy of this approach with more traditional approaches.
doi:10.1186/1748-5908-9-68
PMCID: PMC4087268  PMID: 24898160
Clinical practice guideline development; Evaluation; Patient involvement; Clinical care pathway; Infertility
2.  What Are the Key Ingredients for Effective Public Involvement in Health Care Improvement and Policy Decisions? A Randomized Trial Process Evaluation 
The Milbank Quarterly  2014;92(2):319-350.
Context
In the past 50 years, individual patient involvement at the clinical consultation level has received considerable attention. More recently, patients and the public have increasingly been involved in collective decisions concerning the improvement of health care and policymaking. However, rigorous evaluation guiding the development and implementation of effective public involvement interventions is lacking. This article describes those key ingredients likely to affect public members’ ability to deliberate productively with professionals and influence collective health care choices.
Method
We conducted a trial process evaluation of public involvement in setting priorities for health care improvement. In all, 172 participants (including 83 patients and public members and 89 professionals) from 6 Health and Social Services Centers in Canada participated in the trial. We videorecorded 14 one-day meetings, and 2 nonparticipant observers took structured notes. Using qualitative analysis, we show how public members influenced health care improvement priorities.
Findings
Legitimacy, credibility, and power explain the variations in the public members’ influence. Their credibility was supported by their personal experience as patients and caregivers, the provision of a structured preparation meeting, and access to population-based data from their community. Legitimacy was fostered by the recruitment of a balanced group of participants and by the public members’ opportunities to draw from one another's experience. The combination of small-group deliberations, wider public consultation, and a moderation style focused on effective group process helped level out the power differences between professionals and the public. The engagement of key stakeholders in the intervention design and implementation helped build policy support for public involvement.
Conclusions
A number of interacting active ingredients structure and foster the public's legitimacy, credibility, and power. By paying greater attention to them, policymakers could develop and implement more effective public involvement interventions.
doi:10.1111/1468-0009.12060
PMCID: PMC4089374  PMID: 24890250
patient participation; quality of health care; policymaking; qualitative research
3.  A new impetus for guideline development and implementation: construction and evaluation of a toolbox 
Background
In the last decade, guideline organizations faced a number of problems, including a lack of standardization in guideline development methods and suboptimal guideline implementation. To contribute to the solution of these problems, we produced a toolbox for guideline development, implementation, revision, and evaluation.
Methods
All relevant guideline organizations in the Netherlands were approached to prioritize the topics. We sent out a questionnaire and discussed the results at an invitational conference. Based on consensus, twelve topics were selected for the development of new tools. Subsequently, working groups were composed for the development of the tools. After development of the tools, their draft versions were pilot tested in 40 guideline projects. Based on the results of the pilot tests, the tools were refined and their final versions were presented.
Results
The vast majority of organizations involved in pilot testing of the tools reported satisfaction with using the tools. Guideline experts involved in pilot testing of the tools proposed a variety of suggestions for the implementation of the tools. The tools are available in Dutch and in English at a web-based platform on guideline development and implementation (http://www.ha-ring.nl).
Conclusions
A collaborative approach was used for the development and evaluation of a toolbox for development, implementation, revision, and evaluation of guidelines. This approach yielded a potentially powerful toolbox for improving the quality and implementation of Dutch clinical guidelines. Collaboration between guideline organizations within this project led to stronger linkages, which is useful for enhancing coordination of guideline development and implementation and preventing duplication of efforts. Use of the toolbox could improve quality standards in the Netherlands, and might facilitate the development of high-quality guidelines in other countries as well.
doi:10.1186/1748-5908-9-34
PMCID: PMC3974222  PMID: 24641971
Guideline development; Guideline implementation; Tools; Toolbox
4.  Involving patients in setting priorities for healthcare improvement: a cluster randomized trial 
Background
Patients are increasingly seen as active partners in healthcare. While patient involvement in individual clinical decisions has been extensively studied, no trial has assessed how patients can effectively be involved in collective healthcare decisions affecting the population. The goal of this study was to test the impact of involving patients in setting healthcare improvement priorities for chronic care at the community level.
Methods
Design: Cluster randomized controlled trial. Local communities were randomized in intervention (priority setting with patient involvement) and control sites (no patient involvement). Setting: Communities in a canadian region were required to set priorities for improving chronic disease management in primary care, from a list of 37 validated quality indicators. Intervention: Patients were consulted in writing, before participating in face-to-face deliberation with professionals. Control: Professionals established priorities among themselves, without patient involvement. Participants: A total of 172 individuals from six communities participated in the study, including 83 chronic disease patients, and 89 health professionals. Outcomes: The primary outcome was the level of agreement between patients’ and professionals’ priorities. Secondary outcomes included professionals’ intention to use the selected quality indicators, and the costs of patient involvement.
Results
Priorities established with patients were more aligned with core generic components of the Medical Home and Chronic Care Model, including: access to primary care, self-care support, patient participation in clinical decisions, and partnership with community organizations (p < 0.01). Priorities established by professionals alone placed more emphasis on the technical quality of single disease management. The involvement intervention fostered mutual influence between patients and professionals, which resulted in a 41% increase in agreement on common priorities (95%CI: +12% to +58%, p < 0.01). Professionals’ intention to use the selected quality indicators was similar in intervention and control sites. Patient involvement increased the costs of the prioritization process by 17%, and required 10% more time to reach consensus on common priorities.
Conclusions
Patient involvement can change priorities driving healthcare improvement at the population level. Future research should test the generalizability of these findings to other contexts, and assess its impact on patient care.
Trial registration
The Netherlands National Trial Register #NTR2496.
doi:10.1186/1748-5908-9-24
PMCID: PMC3936906  PMID: 24555508
Patient participation; Quality improvement; Health policy; Primary care; Chronic diseases; Randomized trial
5.  The World Health Report 2008 – Primary Healthcare: How Wide Is the Gap between Its Agenda and Implementation in 12 High-Income Health Systems? 
Healthcare Policy  2012;7(3):38-58.
Background:
The World Health Organization's 2008 report asserted that the focus on primary healthcare (PHC) within health systems should increase, with four sets of reforms required. The WHO's PHC advocacy is well founded, yet its report is a policy document that fails to address adoption and implementation questions within WHO member countries. This paper examines the prospects for the WHO PHC agenda in 12 high-income health systems from Asia, Australasia, Europe and North America, comparing performances against the WHO agenda.
Methods:
A health policy specialist on each of the 12 systems sketched policy activities in each of the four areas of concern to the WHO: (a) whether there is universal coverage, (b) service delivery reforms to build a PHC-oriented system, (c) reforms integrating public health initiatives into PHC settings and (d) leadership promoting dialogue among stakeholders.
Findings:
All 12 systems demonstrate considerable gaps between the actual status of PHC and the WHO vision when assessed in terms of the four WHO reform dimensions, although many initiatives to enhance PHC have been implemented. Institutional arrangements pose significant barriers to PHC reform as envisioned by the WHO.
Conclusions:
PHC reform requires more attention from policy makers. Meanwhile, the WHO PHC report is perhaps too idealistic and fails to address the fundamentals for successful policy adoption and implementation within member countries.
PMCID: PMC3298021  PMID: 23372580
6.  Feasibility of a Wiki as a Participatory Tool for Patients in Clinical Guideline Development 
Background
Patient participation is essential in developing high-quality guidelines but faces practical challenges. Evidence on timing, methods, evaluations, and outcomes of methodologies for patient participation in guideline development is lacking.
Objective
To assess the feasibility of a wiki as a participatory tool for patients in the development of a guideline on infertility determined by (1) use of the wiki (number of page views and visitors), (2) benefits of the wiki (ie, number, content, and eligibility of the recommendations to be integrated into the guideline), and (3) patients’ facilitators of and barriers to adoption, and the potential challenges to be overcome in improving this wiki.
Methods
To obtain initial content for the wiki, we conducted in-depth interviews (n = 12) with infertile patients. Transcripts from the interviews were translated into 90 draft recommendations. These were presented on a wiki. Over 7 months, infertile patients were invited through advertisements or mailings to formulate new or modify existing recommendations. After modifying the recommendations, we asked patients to select their top 5 or top 3 recommendations for each of 5 sections on fertility care. Finally, the guideline development group assessed the eligibility of the final set of recommendations within the scope of the guideline. We used a multimethod evaluation strategy to assess the feasibility of the wiki as a participatory tool for patients in guideline development.
Results
The wiki attracted 298 unique visitors, yielding 289 recommendations. We assessed the 21 recommendations ranked as the top 5 or top 3 for their eligibility for being integrated into the clinical practice guideline. The evaluation identified some challenges needed to be met to improve the wiki tool, concerning its ease of use, website content and layout, and characteristics of the wiki tool.
Conclusions
The wiki is a promising and feasible participatory tool for patients in guideline development. A modified version of this tool including new modalities (eg, automatically limiting the number and length of recommendations, using a fixed format for recommendations, including a motivation page, and adding a continuous prioritization system) should be developed and evaluated in a patient-centered design.
doi:10.2196/jmir.2080
PMCID: PMC3510744  PMID: 23103790
Wiki; patient participation; infertility; Web 2.0; guideline development
8.  Current Guidelines Have Limited Applicability to Patients with Comorbid Conditions: A Systematic Analysis of Evidence-Based Guidelines 
PLoS ONE  2011;6(10):e25987.
Background
Guidelines traditionally focus on the diagnosis and treatment of single diseases. As almost half of the patients with a chronic disease have more than one disease, the applicability of guidelines may be limited. The aim of this study was to assess the extent that guidelines address comorbidity and to assess the supporting evidence of recommendations related to comorbidity.
Methodology/Principal Findings
We conducted a systematic analysis of evidence-based guidelines focusing on four highly prevalent chronic conditions with a high impact on quality of life: chronic obstructive pulmonary disease, depressive disorder, diabetes mellitus type 2, and osteoarthritis. Data were abstracted from each guideline on the extent that comorbidity was addressed (general comments, specific recommendations), the type of comorbidity discussed (concordant, discordant), and the supporting evidence of the comorbidity-related recommendations (level of evidence, translation of evidence). Of the 20 guidelines, 17 (85%) addressed the issue of comorbidity and 14 (70%) provided specific recommendations on comorbidity. In general, the guidelines included few recommendations on patients with comorbidity (mean 3 recommendations per guideline, range 0 to 26). Of the 59 comorbidity-related recommendations provided, 46 (78%) addressed concordant comorbidities, 8 (14%) discordant comorbidities, and for 5 (8%) the type of comorbidity was not specified. The strength of the supporting evidence was moderate for 25% (15/59) and low for 37% (22/59) of the recommendations. In addition, for 73% (43/59) of the recommendations the evidence was not adequately translated into the guidelines.
Conclusions/Significance
Our study showed that the applicability of current evidence-based guidelines to patients with comorbid conditions is limited. Most guidelines do not provide explicit guidance on treatment of patients with comorbidity, particularly for discordant combinations. Guidelines should be more explicit about the applicability of their recommendations to patients with comorbidity. Future clinical trials should also include patients with the most prevalent combinations of chronic conditions.
doi:10.1371/journal.pone.0025987
PMCID: PMC3197602  PMID: 22028802
9.  Perceived barriers to guideline adherence: A survey among general practitioners 
BMC Family Practice  2011;12:98.
Background
Despite considerable efforts to promote and support guideline use, adherence is often suboptimal. Barriers to adherence vary not only across guidelines but also across recommendations within guidelines. The aim of this study was to assess the perceived barriers to guideline adherence among GPs by focusing on key recommendations within guidelines.
Methods
We conducted a cross-sectional electronic survey among 703 GPs in the Netherlands. Sixteen key recommendations were derived from four national guidelines. Six statements were included to address the attitudes towards guidelines in general. In addition, GPs were asked to rate their perceived adherence (one statement) and the perceived barriers (fourteen statements) for each of the key recommendations, based on an existing framework.
Results
264 GPs (38%) completed the questionnaire. Although 35% of the GPs reported difficulties in changing routines and habits to follow guidelines, 89% believed that following guidelines leads to improved patient care. Perceived adherence varied between 52 and 95% across recommendations (mean: 77%). The most perceived barriers were related to external factors, in particular patient ability and behaviour (mean: 30%) and patient preferences (mean: 23%). Lack of applicability of recommendations in general (mean: 22%) and more specifically to individual patients (mean: 25%) were also frequently perceived as barriers. The scores on perceived barriers differed largely between recommendations [minimum range 14%; maximum range 67%].
Conclusions
Dutch GPs have a positive attitude towards the NHG guidelines, report high adherence rates and low levels of perceived barriers. However, the perceived adherence and perceived barriers varied largely across recommendations. The most perceived barriers across recommendations are patient related, suggesting that current guidelines do not always adequately incorporate patient preferences, needs and abilities. It may be useful to provide tools such as decision aids, supporting the flexible use of guidelines to individual patients in practice.
doi:10.1186/1471-2296-12-98
PMCID: PMC3197492  PMID: 21939542
10.  The updating of clinical practice guidelines: insights from an international survey 
Background
Clinical practice guidelines (CPGs) have become increasingly popular, and the methodology to develop guidelines has evolved enormously. However, little attention has been given to the updating process, in contrast to the appraisal of the available literature. We conducted an international survey to identify current practices in CPG updating and explored the need to standardize and improve the methods.
Methods
We developed a questionnaire (28 items) based on a review of the existing literature about guideline updating and expert comments. We carried out the survey between March and July 2009, and it was sent by email to 106 institutions: 69 members of the Guidelines International Network who declared that they developed CPGs; 30 institutions included in the U.S. National Guideline Clearinghouse database that published more than 20 CPGs; and 7 institutions selected by an expert committee.
Results
Forty-four institutions answered the questionnaire (42% response rate). In the final analysis, 39 completed questionnaires were included. Thirty-six institutions (92%) reported that they update their guidelines. Thirty-one institutions (86%) have a formal procedure for updating their guidelines, and 19 (53%) have a formal procedure for deciding when a guideline becomes out of date. Institutions describe the process as moderately rigorous (36%) or acknowledge that it could certainly be more rigorous (36%). Twenty-two institutions (61%) alert guideline users on their website when a guideline is older than three to five years or when there is a risk of being outdated. Twenty-five institutions (64%) support the concept of "living guidelines," which are continuously monitored and updated. Eighteen institutions (46%) have plans to design a protocol to improve their guideline-updating process, and 21 (54%) are willing to share resources with other organizations.
Conclusions
Our study is the first to describe the process of updating CPGs among prominent guideline institutions across the world, providing a comprehensive picture of guideline updating. There is an urgent need to develop rigorous international standards for this process and to minimize duplication of effort internationally.
doi:10.1186/1748-5908-6-107
PMCID: PMC3191352  PMID: 21914177
11.  Target for improvement: a cluster randomised trial of public involvement in quality-indicator prioritisation (intervention development and study protocol) 
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 decision makers). 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 clinicians and managers) 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, http://www.trialregister.nl).
doi:10.1186/1748-5908-6-45
PMCID: PMC3118228  PMID: 21554691
12.  The European Society of Human Reproduction and Embryology guideline for the diagnosis and treatment of endometriosis: an electronic guideline implementability appraisal 
Background
Clinical guidelines are intended to improve healthcare. However, even if guidelines are excellent, their implementation is not assured. In subfertility care, the European Society of Human Reproduction and Embryology (ESHRE) guidelines have been inventoried, and their methodological quality has been assessed. To improve the impact of the ESHRE guidelines and to improve European subfertility care, it is important to optimise the implementability of guidelines. We therefore investigated the implementation barriers of the ESHRE guideline with the best methodological quality and evaluated the used instrument for usability and feasibility.
Methods
We reviewed the ESHRE guideline for the diagnosis and treatment of endometriosis to assess its implementability. We used an electronic version of the guideline implementability appraisal (eGLIA) instrument. This eGLIA tool consists of 31 questions grouped into 10 dimensions. Seven items address the guideline as a whole, and 24 items assess the individual recommendations in the guideline. The eGLIA instrument identifies factors that influence the implementability of the guideline recommendations. These factors can be divided into facilitators that promote implementation and barriers that oppose implementation. A panel of 10 experts from three European countries appraised all 36 recommendations of the guideline. They discussed discrepancies in a teleconference and completed a questionnaire to evaluate the ease of use and overall utility of the eGLIA instrument.
Results
Two of the 36 guideline recommendations were straightforward to implement. Five recommendations were considered simply statements because they contained no actions. The remaining 29 recommendations were implementable with some adjustments. We found facilitators of the guideline implementability in the quality of decidability, presentation and formatting, apparent validity, and novelty or innovation of the recommendations. Vaguely defined actions, lack of facilities, immeasurable outcomes, and inflexibility within the recommendations formed barriers to implementation. The eGLIA instrument was generally useful and easy to use. However, assessment with the eGLIA instrument is very time-consuming.
Conclusions
The ESHRE guideline for the diagnosis and treatment of endometriosis could be improved to facilitate its implementation in daily practice. The eGLIA instrument is a helpful tool for identifying obstacles to implementation of a guideline. However, we recommend a concise version of this instrument.
doi:10.1186/1748-5908-6-7
PMCID: PMC3034686  PMID: 21247418
13.  Development of the AGREE II, part 1: performance, usefulness and areas for improvement 
Background
We undertook research to improve the AGREE instrument, a tool used to evaluate guidelines. We tested a new seven-point scale, evaluated the usefulness of the original items in the instrument, investigated evidence to support shorter, tailored versions of the tool, and identified areas for improvement.
Method
We report on one component of a larger study that used a mixed design with four factors (user type, clinical topic, guideline and condition). For the analysis reported in this article, we asked participants to read a guideline and use the AGREE items to evaluate it based on a seven-point scale, to complete three outcome measures related to adoption of the guideline, and to provide feedback on the instrument’s usefulness and how to improve it.
Results
Guideline developers gave lower-quality ratings than did clinicians or policy-makers. Five of six domains were significant predictors of participants’ outcome measures (p < 0.05). All domains and items were rated as useful by stakeholders (mean scores > 4.0) with no significant differences by user type (p > 0.05). Internal consistency ranged between 0.64 and 0.89. Inter-rater reliability was satisfactory. We received feedback on how to improve the instrument.
Interpretation
Quality ratings of the AGREE domains were significant predictors of outcome measures associated with guideline adoption: guideline endorsements, overall intentions to use guidelines, and overall quality of guidelines. All AGREE items were assessed as useful in determining whether a participant would use a guideline. No clusters of items were found more useful by some users than others. The measurement properties of the seven-point scale were promising. These data contributed to the refinements and release of the AGREE II.
doi:10.1503/cmaj.091714
PMCID: PMC2900328  PMID: 20513780
14.  Development of the AGREE II, part 2: assessment of validity of items and tools to support application 
Background
We established a program of research to improve the development, reporting and evaluation of practice guidelines. We assessed the construct validity of the items and user’s manual in the β version of the AGREE II.
Methods
We designed guideline excerpts reflecting high-and low-quality guideline content for 21 of the 23 items in the tool. We designed two study packages so that one low-quality and one high-quality version of each item were randomly assigned to each package. We randomly assigned 30 participants to one of the two packages. Participants reviewed and rated the guideline content according to the instructions of the user’s manual and completed a survey assessing the manual.
Results
In all cases, content designed to be of high quality was rated higher than low-quality content; in 18 of 21 cases, the differences were significant (p < 0.05). The manual was rated by participants as appropriate, easy to use, and helpful in differentiating guidelines of varying quality, with all scores above the mid-point of the seven-point scale. Considerable feedback was offered on how the items and manual of the β-AGREE II could be improved.
Interpretation
The validity of the items was established and the user’s manual was rated as highly useful by users. We used these results and those of our study presented in part 1 to modify the items and user’s manual. We recommend AGREE II (available at www.agreetrust.org) as the revised standard for guideline development, reporting and evaluation.
doi:10.1503/cmaj.091716
PMCID: PMC2900368  PMID: 20513779
15.  Guidelines on uncomplicated urinary tract infections are difficult to follow: perceived barriers and suggested interventions 
BMC Family Practice  2010;11:51.
Background
Urinary tract infections (UTI) are among the most common health problems seen in general practice. Evidence-based guidelines on UTI are available, but adherence to these guidelines varies widely among practitioners for reasons not well understood. The aim of this study was to identify the barriers to the implementation of a guideline on UTI perceived by Dutch general practitioners (GPs) and to explore interventions to overcome these barriers.
Methods
A focus group study, including 13 GPs working in general practices in the Netherlands, was conducted. Key recommendations on diagnosis and treatment of uncomplicated UTI were selected from the guideline. Barriers to guideline adherence and possible interventions to address these barriers were discussed. The focus group session was audio-taped and transcribed verbatim. Barriers were classified according to an existing framework.
Results
Lack of agreement with the recommendations, unavailable and inconvenient materials (i.e. dipslides), and organisational constraints were perceived as barriers for the diagnostic recommendations. Barriers to implementing the treatment recommendations were lack of applicability and organisational constraints related to the availability of drugs in pharmacies. Suggested interventions were to provide small group education to GPs and practice staff members, to improve organisation and coordination of care in out of hour services, to improve the availability of preferred dosages of drugs, and to pilot-test guidelines regionally.
Conclusions
Despite sufficient knowledge of the recommendations on UTI, attitudinal and external barriers made it difficult to follow them in practice. The care concerning UTI could be optimized if these barriers are adequately addressed in implementation strategies. The feasibility and success of these strategies could be improved by involving the target group of the guideline in selecting useful interventions to address the barriers to implementation.
doi:10.1186/1471-2296-11-51
PMCID: PMC2908068  PMID: 20584276
16.  How to integrate individual patient values and preferences in clinical practice guidelines? A research protocol 
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.
doi:10.1186/1748-5908-5-10
PMCID: PMC2824684  PMID: 20205815
17.  Why don't physicians adhere to guideline recommendations in practice? An analysis of barriers among Dutch general practitioners 
Background
Despite wide distribution and promotion of clinical practice guidelines, adherence among Dutch general practitioners (GPs) is not optimal. To improve adherence to guidelines, an analysis of barriers to implementation is advocated. Because different recommendations within a guideline can have different barriers, in this study we focus on key recommendations rather than guidelines as a whole, and explore the barriers to implementation perceived by Dutch GPs.
Methods
A qualitative study using six focus groups was conducted, in which 30 GPs participated, with an average of seven per session. Fifty-six key recommendations were derived from twelve national guidelines. In each focus group, barriers to the implementation of the key recommendations of two clinical practice guidelines were discussed. Focus group discussions were audiotaped and transcribed verbatim. Data was analysed by using an existing framework of barriers.
Results
The barriers varied largely within guidelines, with each key recommendation having a unique pattern of barriers. The most perceived barriers were lack of agreement with the recommendations due to lack of applicability or lack of evidence (68% of key recommendations), environmental factors such as organisational constraints (52%), lack of knowledge regarding the guideline recommendations (46%), and guideline factors such as unclear or ambiguous guideline recommendations (43%).
Conclusion
Our study findings suggest a broad range of barriers. As the barriers largely differ within guidelines, tailored and barrier-driven implementation strategies focusing on key recommendations are needed to improve adherence in practice. In addition, guidelines should be more transparent concerning the underlying evidence and applicability, and further efforts are needed to address complex issues such as comorbidity in guidelines. Finally, it might be useful to include focus groups in continuing medical education as an innovative medium for guideline education and implementation.
doi:10.1186/1748-5908-4-54
PMCID: PMC2734568  PMID: 19674440
18.  A knowledge synthesis of patient and public involvement in clinical practice guidelines: study protocol 
Background
Failure to reconcile patient preferences and values as well as social norms with clinical practice guidelines (CPGs) recommendations may hamper their implementation in clinical practice. However, little is known about patients and public involvement programs (PPIP) in CPGs development and implementation. This study aims at identifying what it is about PPIP that works, in which contexts are PPIP most likely to be effective, and how are PPIP assumed to lead to better CPGs development and implementation.
Methods and design
A knowledge synthesis will be conducted in four phases. In phase one, literature on PPIP in CPGs development will be searched through bibliographic databases. A call for bibliographic references and unpublished reports will also be sent via the mailing lists of relevant organizations. Eligible publications will include original qualitative, quantitative, or mixed methods study designs reporting on a PPIP pertaining to CPGs development or implementation. They will also include documents produced by CPGs organizations to describe their PPIP. In phase two, grounded in the program's logic model, two independent reviewers will extract data to collect information on the principal components and activities of PPIP, the resources needed, the contexts in which PPIP were developed and tested, and the assumptions underlying PPIP. Quality assessment will be made for all retained publications. Our literature search will be complemented with interviews of key informants drawn from of a purposive sample of CPGs developers and patient/public representatives. In phase three, we will synthesize evidence from both the publications and interviews data using template content analysis to organize the identified components in a meaningful framework of PPIP theories. During a face-to-face workshop, findings will be validated with different stakeholder and a final toolkit for CPGs developers will be refined.
Discussion
The proposed research project will be among the first to explore the PPIP in CPGs development and implementation based on a wide range of publications and key informants interviews. It is anticipated that the results generated by the proposed study will significantly contribute to the improvement of the reconciliation of CPGs with patient preferences and values as well as with social norms.
doi:10.1186/1748-5908-4-30
PMCID: PMC2698931  PMID: 19497114
19.  Comparison of international guideline programs to evaluate and update the Dutch program for clinical guideline development in physical therapy 
Background
Clinical guidelines are considered important instruments to improve quality in health care. Since 1998 the Royal Dutch Society for Physical Therapy (KNGF) produced evidence-based clinical guidelines, based on a standardized program. New developments in the field of guideline research raised the need to evaluate and update the KNGF guideline program.
Purpose of this study is to compare different guideline development programs and review the KNGF guideline program for physical therapy in the Netherlands, in order to update the program.
Method
Six international guideline development programs were selected, and the 23 criteria of the AGREE Instrument were used to evaluate the guideline programs. Information about the programs was retrieved from published handbooks of the organizations. Also, the Dutch program for guideline development in physical therapy was evaluated using the AGREE criteria. Further comparison the six guideline programs was carried out using the following elements of the guideline development processes: Structure and organization; Preparation and initiation; Development; Validation; Dissemination and implementation; Evaluation and update.
Results
Compliance with the AGREE criteria of the guideline programs was high. Four programs addressed 22 AGREE criteria, and two programs addressed 20 AGREE criteria. The previous Dutch program for guideline development in physical therapy lacked in compliance with the AGREE criteria, meeting only 13 criteria.
Further comparison showed that all guideline programs perform systematic literature searches to identify the available evidence. Recommendations are formulated and graded, based on evidence and other relevant factors. It is not clear how decisions in the development process are made. In particular, the process of translating evidence into practice recommendations can be improved.
Conclusion
As a result of international developments and consensus, the described processes for developing clinical practice guidelines have much in common. The AGREE criteria are common basis for the development of guidelines, although it is not clear how final decisions are made. Detailed comparison of the different guideline programs was used for updating the Dutch program. As a result the updated KNGF program complied with 22 AGREE criteria. International discussion is continuing and will be used for further improvement of the program.
doi:10.1186/1472-6963-7-191
PMCID: PMC2228296  PMID: 18036215
20.  Incorporating a gender perspective into the development of clinical guidelines: a training course for guideline developers 
Background
Dutch guideline-developing organizations do not focus systematically on differences between men and women when developing guidelines, even though there is increasing evidence that being male or female may have an effect on health and health outcomes. In collaboration with two prominent Dutch guideline-developing organizations, we designed a training course to encourage systematic attention to sex differences in guideline development procedures.
Methods
The course is targeted towards guideline developers. Its aims are to improve awareness concerning the relevance of considering sex differences in the guideline development process, as well as the competence and skills necessary for putting this into practice. The design and teaching methods of the course are based on adult learning styles and principles of changing provider behaviour. It was adjusted to the working methods of guideline organizations. The course was taught to, and evaluated by, a group of staff members from two guideline organizations in the Netherlands.
Results
The course consists of five modules, each of which corresponds to a key step in the guideline development process. The participants rated the training course positively on content, programme, and trainers. Their written comments suggest that the course met its objectives.
Conclusion
The training course is the first to address sex differences in guideline development. Results from the pilot test suggest that the course achieved its objectives. Because its modules and teaching methods of the course are widely transferable, the course could be useful for many organizations that are involved in developing guidelines. Follow-up studies are needed to assess the long-term effect of the course on the actions of guideline developers and its utility in other settings.
doi:10.1186/1748-5908-2-35
PMCID: PMC2204033  PMID: 17997818
21.  Characteristics of effective clinical guidelines for general practice. 
BACKGROUND: The use of clinical guidelines in general practice is often limited. Research on barriers to guideline adherence usually focuses on attitudinal factors. Factors linked to the guideline itself are much less studied. AIM: To identify characteristics of effective clinical guidelines for general practice, and to explore whether these differ between therapeutic and diagnostic recommendations. DESIGN OF STUDY: Analysis of performance data from an audit study of 200 general practitioners (GPs) in The Netherlands conducted in 1997. SETTING: Panel of 12 GPs in The Netherlands who were familiar with guideline methodology. METHOD: A set of 12 attributes, including six potential facilitators and six potential barriers to guideline use, was formulated. The panel assessed the presence of these attributes in 96 guideline recommendations formulated by the Dutch College of General Practitioners. The attributes of recommendations with high compliance rates (70% to 100%) were compared with those with low compliance rates (0% to 60%). RESULTS: Recommendations with high compliance rates were to a lesser extent those requiring new skills (7% compared with 22% in recommendations with low compliance rates), were less often part of a complex decision tree (12% versus 25%), were more compatible with existing norms and values in practice (87% versus 76%), and more often supported with evidence (47% versus 31%). For diagnostic recommendations, the ease of applying them and the potential (negative) reactions of patients were more relevant than for therapeutic recommendations. CONCLUSION: To bridge the gap between research and practice, the evidence as well as the applicability should be considered when formulating recommendations. If the recommendations are not compatible with existing norms and values, not easy to follow or require new knowledge and skills, appropriate implementation strategies should be designed to ensure change in daily practice.
PMCID: PMC1314503  PMID: 12569898
22.  What Are the Key Ingredients for Effective Public Involvement in Health Care Improvement and Policy Decisions? A Randomized Trial Process Evaluation 
The Milbank Quarterly  2014;92(2):319-350.
Context
In the past 50 years, individual patient involvement at the clinical consultation level has received considerable attention. More recently, patients and the public have increasingly been involved in collective decisions concerning the improvement of health care and policymaking. However, rigorous evaluation guiding the development and implementation of effective public involvement interventions is lacking. This article describes those key ingredients likely to affect public members’ ability to deliberate productively with professionals and influence collective health care choices.
Method
We conducted a trial process evaluation of public involvement in setting priorities for health care improvement. In all, 172 participants (including 83 patients and public members and 89 professionals) from 6 Health and Social Services Centers in Canada participated in the trial. We videorecorded 14 one-day meetings, and 2 nonparticipant observers took structured notes. Using qualitative analysis, we show how public members influenced health care improvement priorities.
Findings
Legitimacy, credibility, and power explain the variations in the public members’ influence. Their credibility was supported by their personal experience as patients and caregivers, the provision of a structured preparation meeting, and access to population-based data from their community. Legitimacy was fostered by the recruitment of a balanced group of participants and by the public members’ opportunities to draw from one another's experience. The combination of small-group deliberations, wider public consultation, and a moderation style focused on effective group process helped level out the power differences between professionals and the public. The engagement of key stakeholders in the intervention design and implementation helped build policy support for public involvement.
Conclusions
A number of interacting active ingredients structure and foster the public's legitimacy, credibility, and power. By paying greater attention to them, policymakers could develop and implement more effective public involvement interventions.
doi:10.1111/1468-0009.12060
PMCID: PMC4089374  PMID: 24890250
patient participation; quality of health care; policymaking; qualitative research

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