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Purpose: Facing the lack of time, busy retina consultants should be aware of how the patients would prefer that time is spent and whether they wish the specialist to talk more at the expense of other medical activities. Methods: 810 persons with diabetes were asked to divide the time of 10 min between examination, consultation and treatment when envisioning a real-life scenario of diabetic retinopathy (NCT02311504). Results: With the increasing duration of diabetes, patients wanted significantly more time for diagnostics (p = 0.028), while age was found to be associated with less time for treatment (p = 0.009). Female subjects tended to prefer only little more time for talking (p = 0.051) in comparison with males, who slightly favored therapy (p = 0.025). Conclusions: The large majority recognized the need for diagnostics in their allocation of time. If individual patients are confronted with the health care perspective of time constraints, this might improve the understanding of prioritization.

PREFACE: The purpose of this Master’s thesis was to determine which attributes of an early intervention (EI) mental health service would encourage treatment initiation and sustained engagement. This research was motivated by the bourgeoning interest in patient-centered care, particularly the incorporation of patient preferences into service design and implementation. Additionally, the research was inspired by the use of marketing research methodology in healthcare. Two conjoint surveys were formulated with the purpose of asking two questions: what EI service attributes will increase the likelihood of someone (1) initiating contact with an EI service and attending their first appointment, and (2) remaining engaged in treatment. A literature search determined which attributes would be the most relevant and important for conceptualizing an EI service. These attributes were narrowed down with the help of focus groups, key informant interviews, the expertise of the authors, and in the case of the second survey, was also informed by the first survey’s results. Each attribute was assigned four levels and these multi-level attributes were formulated into the two aforementioned surveys that were completed by mental health patients, their families, and mental health professionals. Chapter 1 of this thesis contains a short overview of the research literature investigating the benefits of EI services, some of the reasons why many patients may not receive such services, and some potential strategies to enhance patients’ initial contact and ongoing engagement with such services. In particular, the central tenet of this thesis is that patient engagement with EI services will be enhanced if service design considers and incorporates the preferences of patients and their families with regard to the attributes that characterize the service and its delivery. This hypothesis is explored using discrete choice conjoint experimental (DCE) methods to identify important service attributes regarding patient initiation and engagement. Given that DCEs are the central methodology of this thesis, Chapter 1 also includes an introduction to these methods and their unique benefits. Each of these service attribute questions posed above is addressed in a separate survey and experiment. Therefore, the rationale, methods, results and conclusions of each experiment are described in separate chapters (Chapters 2 & 3). It should be noted that these two chapters are written in the form of stand-alone scientific reports, each of which is about to be submitted for publication to peer-reviewed journals. Finally, the thesis concludes with a General Discussion (Chapter 4), which attempts to frame the two studies, and this line of inquiry more generally, in the broader research literature and highlight their clinical and policy implications. It should also be noted that, given that there exists substantial conceptual overlap between the two experiments and the main issues described in both the General Introduction and General Discussion, the reader may encounter some repetition throughout the thesis. / Mental illness places a large burden on individuals and society-at-large, a problem that becomes much worse the longer it is left untreated. Early intervention (EI) can mitigate this burden; however, those experiencing emerging mental illnesses often do not seek help promptly. Patient-centered care, such as shared-decision making models of mental healthcare, may reduce barriers to treatment. A central tenet of patient-centered care is that patient engagement and service utilization increases when patient preferences are incorporated into clinical services. In the current thesis, discrete choice conjoint experiments (DCE) were used to elicit the preferences of patients and their families, as well as the hypothesized preferences of patients according to mental health professionals, in two surveys. The first survey aimed to identify the attributes of an EI service that would encourage people experiencing psychiatric symptoms to initiate contact with a service and attend their first appointment (Chapter 2). The second survey sought to determine which service attributes would encourage someone to remain engaged with mental health treatment (Chapter 3). Both surveys used Latent Class Analysis to segment the study populations into identifiable subgroups based on shared preferences, and Randomized First Choice simulations to predict which service delivery model each of these identified groups would most likely use. The results of these studies have several implications for current and future mental health services. Effective EI mental health services should include rapid access to services, a range of treatment options, and effective crisis response. Moreover, future DCE studies should focus on replicating these results using more heterogeneous samples and improving DCE methods. / Thesis / Master of Science (MSc)

Objective: To determine which website characteristics are preferred by orthodontists, adult patients, and parents of patients. Materials and Methods: 1,000 active members of the American Association of Orthodontists and 750 active orthodontic patients/parents were sampled. Participants rated the importance of website characteristics, indicated presence of those characteristics on the current website, and ranked sample website images. Preferences were compared between orthodontist and the patient/parent group using t-tests and sample websites were compared using ANOVA models and Tukey’s adjusted post-hoc tests. Significance level was set at 0.05. Results: 11 of the 16 website features showed significant differences between patients/parents and orthodontists. Participants preferred sample websites with images of people, information at the top of the page, and an ‘about the doctor’ page with a greater amount of information. Conclusion: This study showed significant differences in preferences between orthodontists and patients/parents, by gender, and between adult patients and parents of adolescent patients.

abstract: Sensitive data sharing presents many challenges in case of unauthorized disclosures, including stigma and discrimination for patients with behavioral health conditions (BHCs). Sensitive information (e.g. mental health) warrants consent-based sharing to achieve integrated care. As many patients with BHCs receive cross-organizational behavioral and physical health care, data sharing can improve care quality, patient-provider experiences, outcomes, and reduce costs. Granularity in data sharing further allows for privacy satisfaction. Though the subjectivity in information patients consider sensitive and related sharing preferences are rarely investigated. Research, federal policies, and recommendations demand a better understanding of patient perspectives of data sensitivity and sharing. The goal of this research is to enhance the understanding of data sensitivity and related sharing preferences of patients with BHCs. The hypotheses are that 1) there is a diversity in medical record sensitivity and sharing preferences of patients with BHCs concerning the type of information, information recipients, and purpose of sharing; and 2) there is a mismatch between the existing sensitive data categories and the desires of patients with BHCs. A systematic literature review on methods assessing sensitivity perspectives showed a lack of methodologies for characterizing patient perceptions of sensitivity and assessing the variations in perceptions from clinical interpretations. Novel informatics approaches were proposed and applied using patients’ medical records to assess data sensitivity, sharing perspectives and comparing those with healthcare providers’ views. Findings showed variations in perceived sensitivity and sharing preferences. Patients’ sensitivity perspectives often varied from standard clinical interpretations. Comparison of patients’ and providers’ views on data sensitivity found differences in sensitivity perceptions of patients. Patients’ experiences (family history as genetic data), stigma towards category definitions or labels (drug “abuse”), and self-perceptions of information applicability (alcohol dependency) were influential factors in patients’ sensitivity determination. This clinical informatics research innovation introduces new methods using medical records to study data sensitivity and sharing. The outcomes of this research can guide the development of effective data sharing consent processes, education materials to inform patients and providers, granular technologies segmenting electronic health data, and policies and recommendations on sensitive data sharing. / Dissertation/Thesis / Doctoral Dissertation Biomedical Informatics 2020

L’information est un des besoins les plus importants des patients atteints de cancer. Leurs attentes fortes, variables et hétérogènes, en matière d’informations sur les différents aspects de la prise en charge de la maladie, soulèvent la question de la qualité de ces informations mises à disposition des patients. L’élaboration d’outils d’information et d’aide à la décision de qualité, qu’ils soient destinés aux cliniciens, tels que les recommandations pour la pratique clinique (RPC), ou aux patients, tels que des documents écrits d’information, implique la prise en compte des trois composantes essentielles de la décision médicale : données actuelles de la science (evidence-based medicine), expertise professionnelle, et préférences et valeurs des patients. Pour pouvoir baser la décision médicale sur ces trois dimensions, l’enjeu est de partager avec les patients les données actuelles de la science, et d’intégrer les préférences des patients dans les RPC. Notre hypothèse est qu’il est possible d’intégrer les préférences des patients à deux niveaux de production des connaissances : l’élaboration de documents écrits d’information des patients dans le cadre du programme SOR SAVOIR Patient d’une part, et l’élaboration de RPC pour les cliniciens d’autre part. Les résultats de ces travaux fournissent une contribution méthodologique pour améliorer la qualité des documents écrits et impliquer les patients atteints de cancer dans le développement de ces informations / Information is one of the most important needs of cancer patients. Their strong, variable and heterogeneous expectations, in terms of information on different aspects of the management of the disease, raise the question of the quality of the information made available to patients. The development of good-quality information materials and decision aids, dedicated to clinicians, such as clinical practice guidelines (CPG), or dedicated to patients, such as patient information leaflets, requires taking into account the three essential components of medical decision: current scientific data (evidence-based medicine), professional expertise and patient values and preferences. To be able to base medical decisions on these three dimensions, the challenge is to share with the patients current scientific data, and incorporate patient preferences in the development process of CPG. Our hypothesis is that it is possible to integrate the preferences of patients at two levels of knowledge production: the development of written patient information in the French SOR SAVOIR Patient program on the one hand, and development of CPG for clinicians on the other hand. The results of this work provide a methodological contribution to improve the quality of written documents and involve cancer patients in the development of this information.

The thesis provides a comprehensive overview of key issues affecting practice, policy and patients, in current efforts for colorectal cancer (CRC) disease control. The global burden of CRC is expected to increase by 60% to more than 2.2 million new cases and 1.1 million deaths by 2030. CRC incidence and mortality rates vary up to 10-fold worldwide, which is thought to reflect variation in lifestyles, especially diet. Better primary prevention, and more effective early detection, in screening and surveillance, are needed to reduce the number of patients with CRC in future1. The risk factors for CRC development include genetic, behavioural, environmental and socio-economic factors. Changes to surveillance, which offer non-invasive testing and provide primary prevention interventions represent promising opportunities to improve outcomes and personalise care in those at risk of CRC. By systematic review of the literature, I highlight the gaps in comparative effectiveness analyses of post-polypectomy surveillance. Using micro-simulation methods I assess the role of non-invasive, faecal immunochemical testing in surveillance programmes, to optimise post-polypectomy surveillance programmes, and in an accompanying sub-study, I explore the value of adding an adjunct diet and lifestyle intervention. The acceptability of such revisions is exposed to patient preference evaluation by discrete choice experiment methods. These preferences are accompanied by evidence generated from the prospective evaluation of the health literacy, numeracy, sedentary behaviour levels, body mass index (BMI) and information provision about cancer risk factors, to highlight the potential opportunities for personalisation and optimisation of surveillance. Additional analysis examines the optimisation of a screening programme facing colonoscopy constraints, highlighting the attendant potential to reduce costs and save lives within current capacity.

Les systèmes de santé accordent une attention croissante au point de vue des usagers dans l’organisation de l’offre de soins. L’instauration d’une offre de soins sensible aux besoins et préférences des patients constitue un enjeu majeur de qualité et d’efficacité des soins. Ce travail analyse le point de vue des patients pour l’offre de soins de médecine générale en utilisant différentes méthodes permettant d’obtenir des informations complémentaires en termes d’expérience de soins, de satisfaction, d’importance ou encore de préférences. Il s’agit des méthodes Delphi, de classement du meilleur au pire et de révélation des préférences par les choix discrets. Ces méthodes sont appliquées sur deux échantillons : en population générale pour la première et chez des patients poly-pathologiques pour les 2 autres afin d’identifier les principaux enjeux actuels et à venir de la réorganisation de l’offre de soins de médecine générale du point de vue des patients. Les résultats montrent le rôle central de la relation médecin-patient et plus particulièrement de l’échange d‘informations entre le médecin et le patient. Cependant une relation médecin-patient de qualité ne doit pas pour autant être réalisée au détriment de la qualité technique du soin et de la coordination de la prise en charge du patient. Ce travail montre également l’importance de prendre en compte l’expérience de soins des patients lors de l’analyse de leur point de vue, et plus particulièrement de leur disposition au changement. L’évaluation systématique et régulière des préférences des patients en pratique quotidienne peut permettre d’améliorer la communication médecin-patient ainsi que le contenu de l’offre de soins du point de vue des patients. / The healthcare systems are paying a great interest to the patients’ perspective for the organization of health care provision. Healthcare system which is accountable and responsive of patients’ needs and preferences is a major issue for the quality and efficiency of care. In this thesis, we analyze the views of patients for the supply of GP care in using different complementary methods about patients’ experience, satisfaction, importance or preferences. These methods are applied to a sample of patients in GP and to a sample of chronically ill patients in order to identify current and future major issues for the reorganization of GP care from the patients’ perspective. The results show the main role of the doctor-patient relationship and especially of the information exchange between doctor and patient and between patient and doctor. However the quality of the doctor-patient relationship is not enough. The technical quality of care (i.e. thoroughness) and the coordination are of high importance for patients. This work highlights that it is necessary to take into account the patients’ experiences in the analysis of their perspective (e.g. preferences) to fully and appropriately understand the results, especially in terms of willingness to change. The systematic and regular screening of patient preferences in daily GP practice can improve the doctor-patient communication and the content of the provision of care from the perspective of patients.