Patient participation in collective healthcare decision making: the Dutch model

Objective  To study whether the Dutch participation model is a good model of participation.
Background  Patient participation is on the agenda, both on the individual and the collective level. In this study, we focus on the latter by looking at the Dutch model in which patient organizations are involved in many formal decision-making processes. This model can be described as neo-corporatist.
Design  We did 52 interviews with actors in the healthcare field, 35 of which were interviews with representatives of patient organizations and 17 with actors that involved patient organizations in their decision making.
Results  Dutch patient organizations have many opportunities to participate in formal healthcare decision making and, as a result, have become institutionalized. Although there were several examples identified in which patient organizations were able to influence decision making, patient organizations remain in a dependent position, which they try to overcome through professionalization.
Discussion  Although this model of participation gives patient organizations many opportunities to participate, it also causes important tensions. Many organizations cannot cope with all the participation possibilities attributed to them. This participation abundance can therefore cause redistribution effects. Furthermore, their dependent position leads to the danger of being put to instrumental use. Moreover, professionalization causes tensions concerning empowerment possibilities and representativeness.
Conclusion  Although the Dutch model tries to make patient organizations an equal party in healthcare decision making, this goal is not reached in practice. It is therefore important to study more closely which subjects patients can and should contribute to, and in what way.     

How does trust affect patient preferences for participation in decision‐making?

Objective  Does trust in physicians aid or hinder patient autonomy? We examine the relationship between trust in the recipient''s doctor, and desire for a participative role in decisions about medical treatment. Design  We conducted a cross‐sectional survey in an urban Canadian teaching hospital. Setting and participants  A total of 606 respondents in three clinics (breast cancer, prostate cancer, fracture) completed questionnaires. Variables studied  The instrument included the Problem Solving Decision Making (PSDM) Scale, which used two vignettes (current health condition, chest pain) to categorize respondents by preferred role, and the Trust‐in‐Physician Scale. Results  Few respondents preferred an autonomous role (2.9% for the current health condition vignette and 1.2% for the chest pain vignette); most preferred shared decision‐making (DM) (67.3% current health condition; 48.7% chest pain) or a passive role (29.6% current health condition; 50.1% chest pain). Trust‐in‐physician yielded 6.3% with blind trust, 36.1% with high trust, 48.6% moderate trust and 9.0% low trust. As hypothesized, autonomous patients had relatively low levels of trust, passive respondents were more likely to have blind trust, while shared respondents had high but not excessive trust. Trust had a significant influence on preferred role even after controlling for the demographic factors such as sex, age and education. Conclusions  Very few respondents wish an autonomous role; those who do tend to have lower trust in their providers. Familiarity with a clinical condition increases desire for a shared (as opposed to passive) role. Shared DM often accompanies, and may require, a trusting patient–physician relationship.     

Patients' preferences for involvement in treatment decision making in Japan

Background  

A number of previous studies have suggested that the Japanese have few opportunities to participate in medical decision-making, as a result both of entrenched physician paternalism and national characteristics of dependency and passivity. The hypothesis that Japanese patients would wish to participate in treatment decision-making if adequate information were provided, and the decision to be made was clearly identified, was tested by interview survey.     

The contingency of patient preferences for involvement in health decision making

BACKGROUND: Studies indicate that better patient compliance and higher patient satisfaction result when agreement exists between the physician and the patient regarding the medical problem and its treatment. PURPOSES: This study will extend previous work by investigating (1) under what conditions patients prefer to be actively involved in their treatment decisions, (2) the underlying theoretical reasons that may account for patient decision-making preferences, and (3) what medical decision-making model can guide physicians and medical policy makers when adapting their medical decision-making styles. METHODOLOGY/APPROACH: A total of 2,765 individuals were surveyed by the National Opinion Research Center as part of the 2002 General Social Survey (GSS). This survey included a one-time topical module on "Doctors and Patients," which incorporated questions on patient preferences concerning the physician-patient relationship. Demographic information (e.g., age, education, and sex) was analyzed against patient preferences for medical decision making. FINDINGS: Results support patient preferences for participatory medical decision making, and this is especially true for younger, more educated, and female patients. PRACTICE IMPLICATIONS: Common prudence would suggest that the best way to determine a patient's preference for participating in medical decision making is to simply ask them. However, the very asking of this straightforward question is based on the assumption that patients do wish to be actively involved. Results of this study support such an assumption. In the absence of all other knowledge, the results of this national survey support the health care practitioner's belief that U.S. patients, in general, have a preference for being actively involved in medical decision making and that this preference is truer for younger, female, and more educated patients.     

Balancing influence between actors in healthcare decision making

Background  

Healthcare costs in most developed countries are not clearly linked to better patient and public health outcomes, but are rather associated with service delivery orientation. In the U.S. this has resulted in large variation in healthcare availability and use, increased cost, reduced employer participation in health insurance programs, and reduced overall population health outcomes. Recent U.S. healthcare reform legislation addresses only some of these issues. Other countries face similar healthcare issues.     

Colorectal cancer screening attitudes and practices preferences for decision making

BACKGROUND: The availability of several effective screening options for colorectal cancer (CRC) screening calls for involving patients in decision making about CRC screening. The current study examined (1) participant characteristics associated with their preferences for participation in CRC screening decision making, (2) correspondence between participant preferences for decision making and their usual participation in decision making, and (3) associations between participant decision-making preferences and CRC screening practices and attitudes. METHODS: Data were obtained using a random, population-based telephone survey, conducted during August 2001 and April 2002, of 2119 community-living adults aged 50 to 75 years (56% female) residing in Long Island, NY. RESULTS: Overall, 77% reported that preferences for CRC screening decision making matched how screening decisions were usually made (simple kappa coefficient=0.67 [0.64-0.69]). Fifteen percent preferred to make screening decisions themselves, while 25% preferred to make decisions after considering their physician's opinion; nearly 50% preferred to share decision making, and 16% preferred that their physician make all screening decisions. Less education was associated with preferring that the physician make all screening decisions. Preferring physician involvement in screening decision making was associated with greater odds of citing no physician recommendation as a barrier to CRC screening, when compared to those who preferred no physician involvement. Preferring no physician involvement in decision making was associated with lower odds of reporting a recent CRC screening exam, as well as lower odds of endorsing positive attitudes and greater odds of endorsing negative attitudes toward CRC screening, when compared to participants who preferred physician involvement in decision making. Their attitudes also reflected intentions not to screen for CRC if they were asymptomatic, as well as the perception that they were not at personal risk for CRC. CONCLUSIONS: Several factors were identified as significantly associated with preferences for decision making and deserve further exploration for their application to clinical practice.     

Professional participation in organizational decision making: Physicians in HMOs

Although it has been suggested that participation by physicians in administrative and policy decisions is linked to outcomes in health care organizations, there is little research on this subject. Using Shortell's framework this paper considers relationships between perceived participation and three intermediate organizational outcomes: physician work satisfaction, perceived staff consensus about day-to-day activities, and attitudes toward patients. Also considered are situational, professional, and personal characteristics which may be related to participation. Data were collected from four staff model health maintenance organizations (HMOs) in 1978 and 1979 through physician questionnaires, administrator interviews, and documents. Physicians who reported greater participation were more satisfied with work, perceived greater staff consensus, and had more favorable attitudes toward patients. Greater participation was associated with full-time employment status and more years in the HMO (but not with the physicians' professional or personal characteristics). Implications of these findings are discussed, and it is proposed that the findings suggest mechanisms by which participation in organizational decision making may affect ultimate outcomes of the organization.     

Are patients' decision‐making preferences being met?

Objective To investigate the information and decision‐making expectations of general practice patients during real life consultations. Design Post‐consultation, quantitative patient preference and enablement questionnaire. Setting and participants Patients attending for routine appointments in general practice surgeries in Oxfordshire, UK. Results Thirteen Oxfordshire general practitioners (GPs) volunteered to take part and a total of 171 patients completed and returned the questionnaire. Between a quarter and one‐third of patients reported receiving less information than they desired, particularly in relation to the risks and benefits of medical treatments. Patients who preferred the doctor to make decisions for them (35%), were more likely to have their preferences met (64%) compared with patients wishing to share decisions (47%) or make their own (18%) who were less likely to achieve this role (52 and 41%, respectively). However, it could not be demonstrated unequivocally that these differences were statistically significant. In total, 61% of patients perceived that they achieved their preferred decision‐making role. No significant differences were found in post‐consultation enablement scores between any of the decision preference groups. Patients' assessments indicated that some doctors were more successful at achieving congruence than others. Conclusion The decision‐making preferences of general practice patients tend to vary. However, there was a substantial mismatch between the stated preferences of patients for the role they wanted to have in decision‐making and what they felt actually took place in their consultation. Therefore, it remains a challenge for doctors to match their consultation style to the decision‐making preferences of individual patients.     

Why Bayesian analysis hasn't caught on in healthcare decision making

The objective of this paper is to discuss why Bayesian statistics is not used more in healthcare decision making and what might be done to increase the use of Bayesian methods. First, a case is made for why Bayesian analysis should be used more widely. Serious weaknesses of commonly used frequentist methods are discussed and contrasted with advantages of Bayesian methods. Next, the question of why Bayesian methods are not used more widely is addressed, considering both philosophical differences and practical issues. Contrary to what some might think, the practical issues are more important in this regard. Finally, some steps to encourage increased use of Bayesian methods in healthcare decision making are presented and discussed. These ideas are straightforward but are by no means trivial to implement, largely because it is difficult to fight tradition and make major paradigm shifts quickly. The primary needs are improved Bayesian training at the basic level (which means textbooks and other materials as well as training of those who teach at the basic level), procedures to make Bayesian analysis easier to understand and use (better software and standard methods for displaying and communicating Bayesian outputs will help here), and the education of decision makers about the advantages of Bayesian methods in important healthcare decision-making problems.     

Exploring older and younger adults' preferences for health information and participation in decision making using the Health Information Wants Questionnaire (HIWQ)

Context

Existing measurements of patient preferences cover only a limited range of health information and participation in decision making. A broader approach is necessary to understand the breadth and variations in patient preferences.

Objective

To explore the breadth and variances in patient preferences for health information and participation in decision making and to understand the relationship between age and each type of preference.

Design

The Health Information Wants Questionnaire (HIWQ) was administered during May–December 2010 to gather data about the information and corresponding decision‐making autonomy participants would want in seven areas: diagnosis, treatment, laboratory tests, self‐care, complementary and alternative medicine (CAM), psychosocial factors and health‐care providers.

Setting

A large state university, public libraries and senior centres in Maryland, USA.

Participants

A convenience sample of 438 individuals, including 226 undergraduates (mean age = 20; SD = 2.15) and 212 community‐dwelling older adults (mean age = 72; SD = 9.00).

Main Outcome Measures

Ratings on the information and decision‐making items of the HIWQ.

Results

Participants expressed higher levels of preference for information than for participation in decision making on six of seven subscales. On the psychosocial subscale, they expressed stronger desire for participation in decision making than for information. Age had no predictive effect on the overall preferences or specific preferences for information and participation in decision making about standard treatments and CAM. The predictive effect of age on the other types of preferences varied significantly.

Conclusions

Physicians should take into account the breadth and variations in patient preferences. The predictive effect of age on patient preferences varied depending on the specific area of preferences.     

RN participation in organizational decision making and improvements in resident outcomes

In the study on which this article is based, nursing homes with the most improvements in resident outcomes had greater registered nurse (RN) participation in decision making than did homes with the least improvements. The results suggest that nursing homes that want to improve quality can use RN participation to make improvements without significantly increasing costs. Complexity theory served as a framework for the study.     

基于医患偏好差异的治疗方案决策模型

文章针对医生、患者等对治疗方案的疗效和风险等存在不同的偏好,难以达成一致的治疗决策,提出了一种基于离散选择实验（DCE）和逼近理想解法（TOPSIS）的治疗方案选择方法。在应用离散选择实验调查患者及医生的偏好基础上,引入逼近理想解法对各种治疗方案进行定量评价。最后,以转移性肾细胞癌的靶向治疗为例说明该方法的具体应用,并比较了医生决策、患者决策、医患共同参与决策等不同决策方式下各治疗方案的评价排序,为临床决策制定提供参考意见。     

Adolescent decision making about participation in a hypothetical HIV vaccine trial

PurposeThe purpose of this study was to examine the process of adolescent decision-making about participation in an HIV vaccine clinical trial, comparing it to adult models of informed consent with attention to developmental differences.MethodsAs part of a larger study of preventive misconception in adolescent HIV vaccine trials, we interviewed 33 male and female 16–19-year-olds who have sex with men. Participants underwent a simulated HIV vaccine trial consent process, and then completed a semistructured interview about their decision making process when deciding whether or not to enroll in and HIV vaccine trial. An ethnographic content analysis approach was utilized.ResultsTwelve concepts related to adolescents’ decision-making about participation in an HIV vaccine trial were identified and mapped onto Appelbaum and Grisso's four components of decision making capacity including understanding of vaccines and how they work, the purpose of the study, trial procedures, and perceived trial risks and benefits, an appreciation of their own situation, the discussion and weighing of risks and benefits, discussing the need to consult with others about participation, motivations for participation, and their choice to participate.ConclusionThe results of this study suggest that most adolescents at high risk for HIV demonstrate the key abilities needed to make meaningful decisions about HIV vaccine clinical trial participation.     

General preferences for involvement in treatment decision making among European women with urinary incontinence

Current health care policies advocate patient participation in treatment decision making. Little evidence on possible differences between European women's preferences for involvement in this process exists. In this study we explore preferences for involvement in treatment decision making in 15 European countries in a sample of 9434 women seeking treatment for urinary incontinence in an outpatient setting. Their generally preferred role in treatment decisions was assessed using the Control Preferences Scale. Results show variations within and between countries in preferences for involvement in treatment decision making. The 'collaborative role' was the most preferred role in Austria, Belgium, Denmark, France, Germany, Ireland, Sweden, Switzerland, the Netherlands and the UK. In Greece, Portugal and Spain the 'passive role' was most preferred. Over a third of women in Denmark, Finland and Norway preferred an 'active role'. Multinominal regression analyses found that, after adjusting for case mix and factors previously associated with role preferences, country membership was strongly associated with role preferences, with women living in Southern European countries preferring a more passive role. Such clear differences are of interest in the current health care environment where active patient participation is being encouraged. Greater efforts need to be made to establish whether patient preferences are genuine or merely a learned response influenced by cultural attitudes and traditions so that a balance can be struck between assisting women to play a more active role in the treatment decision-making process without disregarding some women's genuine preferences to play a more passive role.     

Barriers to evidence-based decision making among Polish healthcare managers.

The 1999 reform of the Polish healthcare system revealed deficiencies in the research base and a lack of organized systems of information provision. Professionals who most need effective information systems are policymakers and healthcare managers. The main aim of the described study was to obtain data describing the needs, preferences and limitations of healthcare managers as information users, and to identify environmental factors influencing their information behaviour. A national postal survey was conducted and supplemented with information collected during focus groups, semi-structured interviews and through analysis of relevant policy documents. The target population included hospital chief executives, medical directors, head nurses and directors of the institutions responsible for health services planning and purchasing. Target institutions were drawn systematically from official lists, stratified by regions of the country and hospital reference level. The interviews were conducted with primary care unit managers and with Ministry of Health officials. National health strategy and directives, cost-effectiveness analyses of interventions and clinical practice guidelines emerged as information of primary importance to respondents. The main barriers to effective information behaviour were found to be: attitudes towards research activity, lack of appropriately processed data, lack of skills enabling information seeking and appraisal, inappropriate format of publications, ineffective dissemination of information and absence of services facilitating access to evidence. The current information environment of healthcare managers, together with their attitude towards information and deficiencies in information skills, appear to serve as a barrier to evidence-based practice in the Polish healthcare system.