Using Patient Blogs on Social Media to Assess the Content Validity of Patient-Reported Outcome Measures: Qualitative Analysis of Patient-Written Blogs.

BACKGROUND: Patient-reported outcome measures (PROMs) are questionnaires that measure patient outcomes related to quality of life, health, and functioning, and are increasingly used to assess important outcomes from the patient's perspective. For PROMs to contribute to better health and better care, it is vital that their content validity be adequate. This requires patient involvement in various steps of PROM development. PROM developers not only recognize the benefits of patient involvement but also report difficulties in recruiting patients and experience patient involvement as time-consuming, logistically challenging, and expensive. OBJECTIVE: This study seeks to explore different strategies for disclosing the experiential knowledge of patients, namely through analyzing patient stories on the web and social media. The research questions are as follows: (1) how do bloggers living with a disease experience their health-related quality of life? (2) How are these experiences reflected in the domains and items of PROMs related to their disease? METHODS: First, a qualitative analysis of blogs written by patients was performed. Second, subthemes and underlying codes resulting from this qualitative analysis were systematically compared with the domains and items in PROMs for the respective diseases that the bloggers write about. Blogs were identified via the Google search engine between December 2019 and May 2021. RESULTS: Bloggers describe a wide range of experiences regarding their physical functioning and health; mental well-being; social network and support; daily life, education, work, and leisure; coping; and self-management. Bloggers also write about their positive and negative experiences with health care delivery, the organization of health care, and health care professionals. In general, patients' experiences as described in blogs were reflected in the domains and items of the PROMs related to their disease. However, except for diabetes mellitus, in all the sets of PROMs, potentially missing topics could be identified. Similarly, with the exception of Parkinson disease, all PROMs address issues that patients did not write about in their blogs and that might therefore be redundant. CONCLUSIONS: Web-based patient stories in the form of blogs reveal how people living with a certain disease experience their health-related quality of life. These stories enable analyses of patients' experiences that can be used to assess the content validity of PROMs. This can be a useful step for researchers who are looking for sets of measuring instruments that match their purposes.

Potential Barriers of Patient Involvement in Health Technology Assessment in Central and Eastern European Countries.

Patients' perspectives are important to identify preferences, estimate values and appreciate unmet medical needs in the process of research and development and subsequent assessment of new health technologies. Patient and public involvement in health technology assessment (HTA) is essential in understanding and assessing wider implications of coverage and reimbursement decisions for patients, their relatives, caregivers, and the general population. There are two approaches to incorporating the patients' voice in HTA, preferably used in a mix. In the first one, patients, caregivers and/or their representatives directly participate at discussions in different stages of the HTA process, often at the same table with other stakeholders. Secondly, patient involvement activities can be supported by evidence on patient value and experience collected directly from patients, caregivers and/or their representatives often by patient groups Patient involvement practices, however, are limited in Central and Eastern European (CEE) countries without clear methodology or regulatory mechanisms to guide patient involvement in the HTA process. This poses the question of transferability of practices used in other countries, and might call for the development of new CEE-specific guidelines and methods. In this study we aim to map potential barriers of patient involvement in HTA in countries of the CEE region.

Information Patients With Melanoma Spontaneously Report About Health-Related Quality of Life on Web-Based Forums: Case Study.

BACKGROUND: There is a general agreement on the importance of health-related quality of life (HRQoL). This type of information is becoming increasingly important for the value assessment of health technology assessment agencies in evaluating the benefits of new health technologies, including medicines. However, HRQoL data are often limited, and additional sources that provide this type of information may be helpful. OBJECTIVE: We aim to identify the HRQoL topics important to patients with melanoma based on web-based discussions on public social media forums. METHODS: We identified 3 public web-based forums from the United States and the United Kingdom, namely the Melanoma Patient Information Page, the Melanoma International Forum, and MacMillan. Their posts were randomly selected and coded using qualitative methods until saturation was reached. RESULTS: Of the posts assessed, 36.7% (150/409) of posts on Melanoma International Forum, 45.1% (198/439) on MacMillan, and 35.4% (128/362) on Melanoma Patient Information Page focused on HRQoL. The 2 themes most frequently mentioned were mental health and (un)certainty. The themes were constructed based on underlying and more detailed codes. Codes related to fear, worry and anxiety, uncertainty, and unfavorable effects were the most-often discussed ones. CONCLUSIONS: Web-based forums are a valuable source for identifying relevant HRQoL aspects in patients with a given disease. These aspects could be cross-referenced with existing tools and they might improve the content validity of patient-reported outcome measures, including HRQoL questionnaires. In addition, web-based forums may provide health technology assessment agencies with a more holistic understanding of the external aspects affecting patient HRQoL. These aspects might support the value assessment of new health technologies and could therefore help inform topic prioritization as well as the scoping phase before any value assessment.

Bridging the gap: Can International Consortium of Health Outcomes Measurement standard sets align outcomes accepted for regulatory and health technology assessment decision-making of oncology medicines.

Standard outcome sets developed by the International Consortium for Health Outcomes Measurement (ICHOM) facilitate value-based health care in healthcare practice and have gained traction from regulators and Health Technology Assessment (HTA) agencies that regularly assess the value of new medicines. We aimed to assess the extent to which the outcomes used by regulators and HTA agencies are patient-relevant, by comparing these to ICHOM standard sets. We conducted a cross-sectional comparative analysis of ICHOM standard sets, and publicly available regulatory and HTA assessment guidelines. We focused on oncology due to many new medicines being developed, which are accompanied by substantial uncertainty regarding the relevance of these treatments for patients. A comparison of regulatory and HTA assessment guidelines, and ICHOM standard sets showed that both ICHOM and regulators stress the importance of disease-specific outcomes. On the other hand, HTA agencies have a stronger focus on generic outcomes in order to allow comparisons across disease areas. Overall, similar outcomes are relevant for market access, reimbursement, and in ICHOM standard sets. However, some differences are apparent, such as the acceptability of intermediate outcomes. These are recommended in ICHOM standard sets, but regulators are more likely to accept intermediate outcomes than HTA agencies. A greater level of alignment in outcomes accepted may enhance the efficiency of regulatory and HTA processes, and increase timely access to new medicines. ICHOM standard sets may help align these outcomes. However, some differences in outcomes used may remain due to the different purposes of regulatory and HTA decision-making.

Bridging health technology assessment and healthcare quality improvement using international consortium of health outcomes measurement standard sets.

OBJECTIVE: Although health technology assessment (HTA) and healthcare quality improvement are distinct processes, a greater level of alignment in outcome measures used may increase the quality and efficiency of data collection. This study evaluates the agreement in outcome measures used in oncology for healthcare quality improvement and HTAs, and how these align to the International Consortium for Health Outcomes Measurement (ICHOM) standard sets. METHODS: We conducted a cross-sectional comparative analysis of ICHOM sets focusing on oncological indications and publicly available measures for healthcare quality and HTA reports published by the National Health Care Institute from the Netherlands and the National Institute for Health and Care Excellence from the United Kingdom. RESULTS: All ICHOM sets and HTAs used overall survival, whereas quality improvement used different survival estimates. Different progression estimates for cancer were used in HTAs, ICHOM sets, and quality improvement. Data on health-related quality of life (HRQoL) was recommended in all ICHOM sets and all HTAs, but selectively for quality improvement. In HTAs, generic HRQoL questionnaires were preferred, whereas, in quality improvement and ICHOM sets, disease-specific questionnaires were recommended. Unfavorable outcomes were included in all HTAs and all ICHOM sets, but not always for quality improvement. CONCLUSIONS: Although HTA and quality improvement use outcome measures from the same domains, a greater level of alignment seems possible. ICHOM may provide input on standardized outcome measures to support this alignment. However, residual discrepancies will remain due to the different objectives of HTA and quality improvement.

Capturing the complexity of healthcare for people with Down syndrome in quality indicators - a Delphi study involving healthcare professionals and patient organisations.

BACKGROUND: Insight into quality of healthcare for people with Down Syndrome (DS) is limited. Quality indicators (QIs) can provide this insight. This study aims to find consensus among participants regarding QIs for healthcare for people with DS. METHODS: We conducted a four-round Delphi study, in which 33 healthcare professionals involved in healthcare for people with DS and two patient organisations' representatives in the Netherlands participated. Median and 75-percentiles were used to determine consensus among the answers on 5-point Likert-scales. In each round, participants received an overview of participants' answers from the previous round. RESULTS: Participants agreed (consensus was achieved) that a QI-set should provide insight into available healthcare, enable healthcare improvements, and cover a large diversity of quality domains and healthcare disciplines. However, the number of QIs in the set should be limited in order to prevent registration burden. Participants were concerned that QIs would make quality information about individual healthcare professionals publicly available, which would induce judgement of healthcare professionals and harm quality, instead of improving it. CONCLUSIONS: We unravelled the complexity of capturing healthcare for people with DS in a QI-set. Patients' rights to relevant information have to be carefully balanced against providers' entitlement to a safe environment in which they can learn and improve. A QI-set should be tailored to different healthcare disciplines and information systems, and measurement instruments should be suitable for collecting information from people with DS. Results from this study and two preceding studies, will form the basis for the further development of a QI-set.

Patient-reported quality of care in anthroposophic and integrative medicine: A scoping review.

OBJECTIVE: To investigate how, and to what extent, patient-reported quality of care is measured in Anthroposophic and Integrative Medicine (AM/IM). METHODS: Scoping review of evaluation studies of patient-reported quality of care and development studies of PREMs and/or PROMs in AM/IM, using five stages of Arksey's methodological framework. SEARCH STRATEGY: Literature search in twelve relevant databases. DATA EXTRACTION: Basic information, added categories: Focus; PREMs/PROMs; Evaluation measures; Patient involvement; Use of results. RESULTS: Sixty-four included studies: 30 quantitative, 20 qualitative and 14 mixed-methods studies. Quantitative studies showed a wide variety of instruments and qualitative studies showed a meaningful list of evaluation themes. Most prevalent themes: Agency & Empowerment; Patient-provider relationship; Perceived effectiveness; Coping & Psychological functioning; Inner awareness; Meaning; and General wellbeing. Seven studies report concrete, coherent, patient-derived evaluation measures with emphasis on PROMs and/or PREMs. CONCLUSION: Patient-reported quality of care was not measured in a standardised way. Knowledge gap: in general, quantitative studies lack patient-derived measures and qualitative studies lack development of concrete evaluation measures. Many AM/IM evaluation aspects connect with patient-centred care. PRACTICE IMPLICATION: The international field of AM/IM would benefit from the development of a core set of validated PROMs and PREMs to further enhance its scientific underpinning.

Quality of health care according to people with Down syndrome, their parents and support staff-A qualitative exploration.

BACKGROUND: People with Down syndrome (PDS) have complex healthcare needs. Little is known about the quality of health care for PDS, let alone how it is appraised by PDS and their caregivers. This study explores the perspectives of PDS, their parents and support staff regarding quality in health care for PDS. METHOD: The present authors conducted semi-structured interviews with 18 PDS and 15 parents, and focus groups with 35 support staff members (of PDS residing in assisted living facilities) in the Netherlands. RESULTS: According to the participants, healthcare quality entails well-coordinated health care aligned with other support and care systems, a person-centred and holistic approach, including respect, trust and provider-patient communication adapted to the abilities of PDS. CONCLUSIONS: Our findings may be used to improve health care for PDS, and provide insight into how health care could match the specific needs of PDS.

Exploring the solutions to the inherent perils of (the multitude of) guidelines - a focus group study of stakeholders' perceptions.

BACKGROUND: Hospital boards have the responsibility to ensure compliance of hospital staff with guidelines and other norms, but they have struggled to do so. The current study aims to identify possible solutions that address the whole chain of guideline and norm production, use and enforcement and that could help hospital boards and management cope with norms and guidelines. METHODS: We performed a qualitative study of three focus groups involving a total of 28 participants. In the third focus group, no new themes emerged, indicating that saturation was achieved. Focus group discussions were audiotaped and transcribed verbatim. Results were coded, and three themes emerged from the results. Thick description with selected key quotes is used to display the items in the result section. RESULTS: In the first instance, norm developers, norm enforcers, and norm users acknowledged and reformulated the problem before they suggested solutions. The proposed concrete solutions, such as a clear description of the division of tasks within guidelines, clarity about the purpose of guideline recommendations, a maximum number of quality indicators for hospitals and implementation of an ensuring proper Information Technology (IT) infrastructure. CONCLUSIONS: This study aimed to find solutions for the problems that hospitals encounter in managing a multitude of norms and guidelines. Participants in this study acknowledged the fact that norms and guidelines have become difficult to manage at the hospital level and four potential solutions were identified. TRIAL REGISTRATION: The study was retrospectively registered on the 21st of July in 2016 in the Dutch Trial Register as NL4061 .

"Strangers in the ER": Quality indicators and third party interference in Dutch emergency care.

RATIONALE, AIMS, AND OBJECTIVES: This paper examines a remarkable dispute between Dutch insurers, hospitals, doctors, and patients about a set of quality indicators. In 2013, private insurers planned to drastically reform Dutch emergency care using quality indicators they had formulated drawing from clinical guidelines, RCTs, and systematic reviews. Insurers' plans caused much debate in the field of emergency care. As quality indicators have come to play a more central role in health care governance, the questions what constitutes good evidence for them, how they ought to be used, and who controls them have become politically and morally charged. This paper is a case study of how a Dutch public knowledge institution, the National Health Care Institute, intervened in this dispute and how they addressed these questions. METHOD: We conducted ethnographic research into the knowledge work of the National Health Care Institute. Research entailed document analysis, participant observation, in-depth conversations, and formal interviews with 5 key-informants. RESULTS: The National Health Care Institute problematized not only the evidence supporting insurers' indicators, but also-and especially-the scope, purpose, and use of the indicators. Our analysis shows the institute's struggle to reconcile the technical rationality of quality indicators with their social and political implications in practice. The institute deconstructed quality indicators as national standards and, instead, promoted the use of indicators in dialogue with stakeholders and their local and contextual knowledge. CONCLUSIONS: Even if quality indicators are based on scientific evidence, they are not axiomatically good or useful. Both proponents and critics of Evidence-based Medicine always feared uncritical use of evidence by third parties. For non-medical parties who have no access to primary care processes, the type of standardized knowledge professed by Evidence-based Medicine provides the easiest way to gain insights into "what works" in clinical practice. This case study reminds us that using standardized knowledge for the management of health care quality requires the involvement of stakeholders for the development and implementation of indicators, and for the interpretation of their results.

What hospitals need to know about guidelines-A mixed-method analysis of guideline implementation in Dutch hospitals.

RATIONALE, AIMS AND OBJECTIVES: This study provides insight into how Dutch hospitals ensure that guidelines are used in practice and identifies what key messages other hospitals can learn from existing practices. We examine current practices in handling compliance and, therefore, focus on hospitals that reported that they do not experience problems in the implementation of guidelines. METHOD: A survey of Dutch hospital boards and 9 semistructured interviews were conducted with a purposive sample of 3 hospitals. Interviews were held with 3 representatives of each hospital, specifically, with a member of the board of directors, a member of the executive medical staff, and the manager of the quality and safety department. RESULTS: Hospitals find guidelines necessary and useful. Hospitals have the power to improve implementation if boards of directors and medical staff are committed, intrinsically motivated, cooperate with each other, and use guidelines pragmatically. Even then, they prioritize guidelines, as resources are scarce. Despite their good work, all hospitals in this study appeared to struggle to adhere to guidelines. CONCLUSIONS: If hospitals experience problems with guideline implementation, they tend to focus more on external expectations, leading to defensive behaviour. Hospitals that do not experience implementation problems focus more on integrating guidelines into their own policies.

In search of quality indicators for Down syndrome healthcare: a scoping review.

BACKGROUND: The medical care chain around Down syndrome (DS) is complex, with many multidisciplinary challenges. The current quality of care is unknown. Outcome-oriented quality indicators have the potential to improve medical practice and evaluate whether innovations are successful. This is particularly interesting for the evolving care for people with DS and intellectual disabilities (ID). The aim of this study was to identify existing indicators for medical DS care, by reviewing the literature. METHODS: We systematically searched six databases (PubMed, EMBASE, Web of Science, CINAHL, PsycINFO, Google Scholar) for studies concerning the development and implementation of quality indicators for DS and/or ID care, published until February 1st 2015. The scoping review method was used, including systematic data extraction and stakeholder consultation. RESULTS: We identified 13 studies concerning quality indicators for ID care that obtained data originating from questionnaires (patient/family/staff), medical files and/or national databases. We did not find any indicator sets specifically for DS care. Consulted stakeholders did not come up with additional indicator sets. Existing indicators for ID care predominantly focus on support services. Indicators in care for people with ID targeting medical care are scarce. Of the 70 indicators within the 13 indicator sets, 10% are structure indicators, 34% process, 32% outcome and 24% mixed. Ten of the 13 sets include indicators on the WHO quality dimensions 'patient-centeredness', 'effectiveness' and 'efficiency' of care. 'Accessibility' is covered by nine sets, 'equitability' by six, and 'safety' by four. Most studies developed indicators in a multidisciplinary manner in a joint effort with all relevant stakeholders; some used focus groups to include people with ID. CONCLUSION: To our knowledge, this is the first review that searched for studies on quality indicators in DS care. Hence, the study contributes to existing knowledge on DS care as well as on measuring quality of care. Future research should address the development of a compact set of quality indicators for the DS care chain as a whole. Indicators should preferably be patient-centred and outcome-oriented, including user perspectives, while developed in a multidisciplinary way to achieve successful implementation.

Understanding and using quality information for quality improvement: The effect of information presentation.

OBJECTIVE: To examine how information presentation affects the understanding and use of information for quality improvement. DESIGN: An experimental design, testing 22 formats, and showing information on patient safety culture. Formats differed in visualization, outcomes and benchmark information. INTERVENTION(S): Respondents viewed three randomly selected presentation formats in an online survey, completing several tasks per format. SETTING: The hospital sector in the Netherlands. PARTICIPANTS: A volunteer sample of healthcare professionals, mainly nurses, working in hospitals. Main Outcome Measure(s): The degree to which information is understandable and usable (accurate choice for quality improvement, sense of urgency to change and appraisal of one's own performance). RESULTS: About 115 healthcare professionals participated (response rate 25%), resulting in 345 reviews. UNDERSTANDABILITY: Information in tables (P = 0.007) and bar charts (P < 0.0001) was better understood than radars. Presenting outcomes on a 5-point scale (P < 0.001) or as '% positive responders' (P < 0.001) was better understood than '% negative responders'. Formats without benchmarks were better understood than formats with benchmarks. Use: Bar charts resulted in more accurate choices than tables (P = 0.003) and radars (P < 0.001). Outcomes on a 5-point scale resulted in more accurate choices than '% negative responders' (P = 0.007). Presenting '% positive responders' resulted in a higher sense of urgency to change than outcomes on a 5-point scale (P = 0.002). Benchmark information had inconsistent effects on the appraisal of one's own performances. CONCLUSIONS: Information presentation affects healthcare professionals' understanding and use of quality information. Our findings supplement the further understanding on how quality information can be best communicated to healthcare professionals for realizing quality improvements.

Patient-centered outcomes on quality of life and anthroposophic healthcare: a qualitative triangulation study.

PURPOSE: To provide a qualitative investigation of aspects that matter to patients regarding quality of life (QOL) and other perceived treatment effects of anthroposophic healthcare (AH). It is a first step in the development of patient reported outcome measures (PROMs) for AH. Hence, it will contribute to the evaluation of AH quality from patients' perspectives. METHOD: Within-method triangulation of four qualitative data sources is: (1) Survey of 2063 patients of AH general practitioners; single open item; (2) Survey of 34 patients of AH nurses; single open item; (3) and (4) Sixteen semi-structured interviews with patients. The data sources contained patients' qualitative reports on contribution of treatment to QOL, other perceived treatment effects and/or quality of care aspects. Content analysis Construction of items and domains by open, axial and selective coding. RESULTS: Twelve domains regarding quality of life are found: Recovery/Symptom reduction, Active contribution/Autonomy, General well-being, Meaning, Rest/Relaxation, Functioning, Energy/Strength, Care relationship, Natural healing, Mindful inner attitude, Being well informed and Social relations. The interviews demonstrate relations between domains. CONCLUSIONS: The findings give a comprehensive insight into aspects of care that are relevant to patients, providing a first step to develop PROMs for AH. Findings show a broadening of domains compared to existing measurement instruments and show close similarities with the recently developed concept of "positive health." Extending QOL instruments with a broader set of domains would give concrete tools to improve evaluation of quality of care and make this evaluation more in line with aspects that matter to AH patients.

How nurses and their work environment affect patient experiences of the quality of care: a qualitative study.

BACKGROUND: Healthcare organisations monitor patient experiences in order to evaluate and improve the quality of care. Because nurses spend a lot of time with patients, they have a major impact on patient experiences. To improve patient experiences of the quality of care, nurses need to know what factors within the nursing work environment are of influence. The main focus of this research was to comprehend the views of Dutch nurses on how their work and their work environment contribute to positive patient experiences. METHODS: A descriptive qualitative research design was used to collect data. Four focus groups were conducted, one each with 6 or 7 registered nurses in mental health care, hospital care, home care and nursing home care. A total of 26 nurses were recruited through purposeful sampling. The interviews were audiotaped, transcribed and subjected to thematic analysis. RESULTS: The nurses mentioned essential elements that they believe would improve patient experiences of the quality of nursing care: clinically competent nurses, collaborative working relationships, autonomous nursing practice, adequate staffing, control over nursing practice, managerial support and patient-centred culture. They also mentioned several inhibiting factors, such as cost-effectiveness policy and transparency goals for external accountability. Nurses feel pressured to increase productivity and report a high administrative workload. They stated that these factors will not improve patient experiences of the quality of nursing care. CONCLUSIONS: According to participants, a diverse range of elements affect patient experiences of the quality of nursing care. They believe that incorporating these elements into daily nursing practice would result in more positive patient experiences. However, nurses work in a healthcare context in which they have to reconcile cost-efficiency and accountability with their desire to provide nursing care that is based on patient needs and preferences, and they experience a conflict between these two approaches. Nurses must gain autonomy over their own practice in order to improve patient experiences.

The consumer quality index anthroposophic healthcare: a construction and validation study.

BACKGROUND: Accounting for the patients' perspective on quality of care has become increasingly important in the development of Evidence Based Medicine as well as in governmental policies. In the Netherlands the Consumer Quality (CQ) Index has been developed to measure the quality of care from the patients' perspective in different healthcare sectors in a standardized manner. Although the scientific accountability of anthroposophic healthcare as a form of integrative medicine is growing, patient experiences with anthroposophic healthcare have not been measured systematically. In addition, the specific anthroposophic aspects are not measured by means of existing CQ Indexes. To enable accountability of quality of the anthroposophic healthcare from the patients' perspective the aim of this study is the construction and validation of a CQ Index for anthroposophic healthcare. METHOD: Construction in three phases: Phase 1. Determining anthroposophic quality aspects: literature study and focus groups. Phase 2. Adding new questions and validating the new questionnaire. Research population: random sample from 7910 patients of 22 anthroposophic GPs. DATA COLLECTION: survey, mixed mode by means of the Dillman method. Measuring instrument: experience questionnaire: CQ Index General Practice (56 items), added with 27 new anthroposophic items added and an item-importance questionnaire (anthroposophic items only). STATISTICAL ANALYSES: Factor analysis, scale construction, internal consistency (Chronbach's Alpha), inter-item-correlation, discriminative ability (Intra Class Correlation) and inter-factor-correlations. Phase 3. Modulation and selection of new questions based on results. Criteria of retaining items: general: a limited amount of items, statistical: part of a reliable scale and inter-item-correlation <0,7, and theoretical. RESULTS: Phase 1. 27 anthroposophic items. Phase 2. Two new anthroposophic scales: Scale AntroposophicTreatmentGP: seven items, Alpha=0,832, ICC=4,2 Inter-factor-correlation with existing GP-scales range from r=0,24 (Accessibility) to r=0,56 (TailoredCare). Scale InteractionalStyleGP: five items, Alpha=0,810, ICC=5,8, Inter-factor-correlation with existing GP-scales range from r=0,32 (Accessibility) to r=0,76 (TailoredCare). Inter-factor-correlation between new scales: r=0,50. Phase 3: Adding both scales and four single items. Removing eleven items and reformulating two items. CONCLUSION: The CQ Index Anthroposophic Healthcare measures patient experiences with anthroposophic GP's validly and reliably. Regarding the inter-factor-correlations anthroposophic quality aspects from the patients' perspective are mostly associated with individually tailored care and patient centeredness.

Are patients' preferences regarding the place of treatment heard and addressed at the point of referral: an exploratory study based on observations of GP-patient consultations.

BACKGROUND: Today, in several north-western European countries, patients are encouraged to choose, actively, a healthcare provider. However, patients often visit the provider that is recommended by their general practitioner (GP). The introduction of patient choice requires GPs to support patients to be involved, actively, in the choice of a healthcare provider. We aim to investigate whether policy on patient choice is reflected in practice, i.e. what the role of the patient is in their choices of healthcare providers at the point of referral and to what extent GPs' and patients' healthcare paths influence the role that patients play in the referral decision. METHODS: In 2007-2008, we videotaped Dutch GP-patient consultations. For this study, we selected, at random, 72 videotaped consultations between 72 patients and 39 GPs in which the patient was referred to a healthcare provider. These were analysed using an observation protocol developed by the researchers. RESULTS: The majority of the patients had little or no input into the choice of a healthcare provider at the point of referral by their GP. Their GPs did not support them in actively choosing a provider and the patients often agreed with the provider that the GP proposed. Patients who were referred for diagnostic purposes seem to have had even less input into their choice of a provider than patients who were referred for treatment. CONCLUSIONS: We found that the GP chooses a healthcare provider on behalf of the patient in most consultations, even though policy on patient choice expects from patients that they choose, actively, a provider. On the one hand, this could indicate that the policy needs adjustments. On the other hand, adjustments may be needed to practice. For instance, GPs could help patients to make an active choice of provider. However, certain patients prefer to let their GP decide as their agent. Even then, GPs need to know patients' preferences, because in a principal-agent relationship, it is necessary that the agent is fully informed about the principal's preferences.