Precision cancer medicine and the doctor-patient relationship:a systematic review and narrative synthesis

Background: The implementation of precision medicine is likely to have a huge impact on clinical cancer care, while the doctor-patient relationship is a crucial aspect of cancer care that needs to be preserved. This systematic review aimed to map out perceptions and concerns regarding how the implementation of precision medicine will impact the doctor-patient relationship in cancer care so that threats against the doctor-patient relationship can be addressed. Methods: Electronic databases (Pubmed, Scopus, Web of Science, Social Science Premium Collection) were searched for articles published from January 2010 to December 2021, including qualitative, quantitative, and theoretical methods. Two reviewers completed title and abstract screening, full-text screening, and data extraction. Findings were summarized and explained using narrative synthesis. Results: Four themes were generated from the included articles (n = 35). Providing information addresses issues of information transmission and needs, and of complex concepts such as genetics and uncertainty. Making decisions in a trustful relationship addresses opacity issues, the role of trust, and and physicians’ attitude towards the role of precision medicine tools in decision-making. Managing negative reactions of non-eligible patients addresses patients’ unmet expectations of precision medicine. Conflicting roles in the blurry line between clinic and research addresses issues stemming from physicians’ double role as doctors and researchers. Conclusions: Many findings have previously been addressed in doctor-patient communication and clinical genetics. However, precision medicine adds complexity to these fields and further emphasizes the importance of clear communication on specific themes like the distinction between genomic and gene expression and patients’ expectations about access, eligibility, effectiveness, and side effects of targeted therapies.</p

Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis.

Background There is increasing interest in involving patient preferences for benefts and risks in regulatory decision making. Therefore, it is essential to identify patient perspectives regarding the value of patient preference information (PPI). Objectives The aim of this study was to explore how patients with rheumatoid arthritis (RA) value the use of PPI in regulatory decision making regarding medical products. Methods Regulators and patients with RA were interviewed to gather initial insights into opinions on the use of PPI in regulatory decisions regarding medical products. The interviews were used to draft and validate the interview guide for focus groups with patients with RA. Participants were purposively sampled in collaboration with the Swedish Rheumatism Association in Stockholm and Uppsala. Each focus group consisted of three to six patients (18 in total). All interviews were audio-recorded, transcribed verbatim, and analysed using content analysis. Results According to the participants, PPI could lead to regulators considering patients’ needs, lifestyles and well-being when mak

Public Preferences for Introducing a COVID-19 Certificate:A Discrete Choice Experiment in the Netherlands

Objective: Here we investigate public preferences for coronavirus disease 2019 (COVID-19) certificates in the Netherlands, and whether these preferences differ between subgroups in the population. Methods: A survey including a discrete choice experiment was administered to 1500 members of the adult population of the Netherlands. Each participant was asked to choose between hypothetical COVID-19 certificates that differed in seven attributes: the starting date, and whether the certificate allowed gathering with multiple people, shopping without appointment, visiting bars and restaurants, visiting cinemas and theatres, attending events, and practising indoor sports. Latent class models (LCMs) were used to determine the attribute relative importance and predicted acceptance rate of hypothetical certificates. Results: Three classes of preference patterns were identified in the LCM. One class a priori opposed a certificate (only two attributes influencing preferences), another class was relatively neutral and included all attributes in their decision making, and the final class was positive towards a certificate. Respondents aged &gt; 65 years and those who plan to get vaccinated were more likely to belong to the latter two classes. Being allowed to shop without appointment and to visit bars and restaurants was most important to all respondents, increasing predicted acceptance rate by 12 percentage points. Conclusions: Preferences for introduction of a COVID-19 certificate are mixed. A certificate that allows for shopping without appointment and visiting bars and restaurants is likely to increase acceptance. The support of younger citizens and those who plan to get vaccinated seems most sensitive to the specific freedoms granted by a COVID-19 certificate

Short-term mental distress in research participants after receiving cardiovascular risk information.

Background Understanding of how cardiovascular risk information influence individuals is critical for the practice of risk assessment and the management of patients with cardiovascular disease. Objectives The objective of this study was to investigate change in mental distress among research participants after undergoing a cardiovascular risk assessment and receiving individual test results. Methods In 2017, a question

Preferences and willingness to pay for personalized nutrition interventions:Discrete choice experiments in Europe and the United States

This study gives insight into what intervention-related factors are crucial for using personalized nutrition (PN) interventions, as well as what the general population is willing to pay for PN. This was done by focusing on two different types of PN (i.e., PN advice and personalized meals) in two discrete choice experiments (DCEs). The DCEs were conducted in four European countries and the United States, including at least 500 respondents per country aged 18–65 years. Panel mixed multinomial logit models were used to evaluate the preferences. Results show that for both types of PN in all countries, the total expenditure on nutrition was the most crucial factor when choosing a PN intervention. The participation rate for specific hypothetical scenario's varied but was considered high overall (maximum 81 % for ‘PN advice’ and 87 % for ‘personalized meals’ in Spain). Moreover, highest willingness to pay estimates were found for six kilograms of weight loss. For example, Polish respondents were willing to spend an extra 25.78 euros per week for ‘personalized meals’ for a 4-month period to lose six kilograms. Our models showed preference heterogeneity between, but also within, the different countries. In conclusion, this study showed that people seem willing to pay for and participate in PN interventions. Since PN interventions may improve health outcomes, policymakers should consider subsidizing some of the costs, financially incentivizing PN interventions or introducing commitment lotteries to encourage uptake. More research is needed to study heterogeneity in preferences.</p

ON THE EXPRESSIVE POWER OF THE RELATIONAL MODEL: A DATABASE DESIGNER\u27S POINT OF VIEW

The purpose of this paper is to introduce a framework for assessing the expressive power of data models and to apply this framework to the relational model of data. From a designer\u27s point of view, a data model such as the relational model should not only be formally defined and easy to understand, but should also provide a powerful set of constructs to model real-world phenomena. The expressive power of a data model, defined as the degree to which its constructs match with constructs encountered in reality, can be judged by two complementary principles: the interpretation principle and the representation principle. It is asserted that database designers attempt to minimize the number of ad hoc database constraints, and that a data model faithful to the two principles supports this design strategy. Subsequently, this constraint minimization strategy is used to assess the expressive power of a particular data model, i.e., the relational data model. The authors take the position that the expressive power of the relational model is not optimal, due to a lack of adherence to both the interpretation principle and the representation principle. The paper amplifies this position by means of a number of examples, all based on publications by Codd and Date

Trading patients' choice in providers for quality of maternity care? A discrete choice experiment amongst pregnant women

Background The introduction of bundled payment for maternity care, aimed at improving the quality of maternity care, may affect pregnant women’s choice in providers of maternity care. This paper describes a Dutch study which examined pregnant women’s preferences when choosing a maternity care provider. The study focused on factors that enhance the quality of maternity care versus (restricted) provider choice. Methods A discrete choice experiment was conducted amongst 611 pregnant women living in the Netherlands using an online questionnaire. The data were analysed with Latent Class Analyses. The outcome measure consisted of stated preferences in the discrete choice experiment. Included factors were: information exchange by care providers through electronic medical records, information provided by midwife, information provided by friends, freedom to choose maternity care provider and travel distance. Results Four different preference structures were found. In two of those structures, respondents found aspects of the maternity care related to quality of care more important than being able to choose a provider (provider choice). In the two other preference structures, respondents found provider choice more important than aspects related to quality of maternity care. Conclusions In a country with presumed high-quality maternity care like the Netherlands, about half of pregnant women prefer being able to choose their maternity care provider over organisational factors that might imply better quality of care. A comparable amount of women find quality-related aspects most important when choosing a maternity care provider and are willing to accept limitations in their choice of provider. These insights are relevant for policy makers in order to be able to design a bundled payment model which justify the preferences of all pregnant women

Can healthcare choice be predicted using stated preference data?

Lack of evidence about the external validity of Discrete Choice Experiments (DCEs)-sourced preferences inhibits greater use of DCEs in healthcare decision-making. This study examines the external validity of such preferences, unravels its determinants, and provides evidence of whether healthcare choice is predictable. We focused on influenza vaccination and used a six-step approach: i) literature study, ii) expert interviews, iii) focus groups, iv) survey including a DCE, v) field data, and vi) in-depth interviews with respondents who showed discordance between stated choices and actual healthcare utilization. Respondents without missing values in the survey and the actual healthcare utilization (377/499 = 76%) were included in the analyses. Random-utility-maximization and random-regret-minimization models were used to analyze the DCE data, whereas the in-depth interviews combined five scientific theories to explain discordance.