Samantha A. Adams

Looking for answers, constructing reliability: An exploration into how Dutch patients check web-based medical information

INTRODUCTION In the discussion about helping lay end users find reliable health-related information on the web, lay assessment practices of the reliability of information are often dismissed as insufficient. It is suggested that patients do not check important background information (authors, dates) for the medical content on websites. However, little effort has been made to understand how lay practices enable patients to assess information reliability in respect to their specific health situations. OBJECTIVE This paper draws upon ethnographic research among Dutch patients to understand lay assessment practices. METHODS We conducted qualitative interviews and observed patient search practices. Patients were asked to describe and then repeat the last searches they had conducted. They were also given standardized questions for searching for information. RESULTS Patients did not utilize special user tools (checklists, seals, portals) to assist in searching for and evaluating information. However, we saw explicit strategies for checking information within their established patterns of searching, such as on and offline triangulation of information and checking information provider information and dates. CONCLUSION Although patients do not follow standardized checklists, this is not to say that they are not assessing information. Their assessment processes are more extensive than current literature suggests.

The nature of the Net: constructing reliability of health information on the Web

This article juxtaposes the history of the book to the current discussions about lay health information on the Internet in order to thoroughly open up the notion of “reliability” that underlies these discussions. It uses the parallels between the two media to improve understanding of what actors are involved and what issues are at stake, as well as how this is consequential for the reliability that is constructed.

Information Rx: Prescribing Good Consumerism and Responsible Citizenship

Recent medical informatics and sociological literature has painted the image of a new type of patient—one that is reflexive and informed, with highly specified information needs and perceptions, as well as highly developed skills and tactics for acquiring information. Patients have been re-named “reflexive consumers.” At the same time, literature about the questionable reliability of web-based information has suggested the need to create both user tools that have pre-selected information and special guidelines for individuals to use to check the individual characteristics of the information they encounter. In this article, we examine suggestions that individuals must be assisted in developing skills for “reflexive consumerism” and what these particular skills should be. Using two types of data (discursive data from websites and promotional items, and supplementary data from interviews and ethnographic observations carried out with those working to sustain these initiatives), we examine how users are directly addressed and discussed. We argue that these initiatives prescribe skills and practices that extend beyond finding and assessing information on the internet and demonstrate that they include ideals of consumerism and citizenship.

POST-PANOPTIC SURVEILLANCE THROUGH HEALTHCARE RATING SITES

This article examines websites where patients rate and evaluate healthcare services as mechanisms for transforming citizens into surveillers of public services in order to generate knowledge about the everyday performance of professionals and institutions. Using post-panoptic theories about the use of information and communication technologies in daily life, it questions how such sites, and the knowledge they generate, relate to existing surveillance structures. It begins with a review of current surveillance literature before turning to the empirical case of the Dutch website Zoekdokter. It situates the site in its specific national health and policy context, which enables not only an analysis of the site, but also the existing rules, norms and structures for monitoring performance and the dynamic between multiple types of surveillance that occur simultaneously in practice. Zoekdokter.nl is one of six cases in this research project and is the only case where patients are encouraged to evaluate individual professionals identified by name and location. I analyze website texts and 15 stakeholder interviews using the post-panoptic concepts of sousveillance, coveillance and infoveillance. In the discussion, I use the case to reflect on several assumptions made in current post-panoptic theory and, more specifically, on the transferability of these ideas to specific sectors, such as healthcare.

Disease management projects and the Chronic Care Model in action: baseline qualitative research

BackgroundDisease management programs, especially those based on the Chronic Care Model (CCM), are increasingly common in the Netherlands. While disease management programs have been well-researched quantitatively and economically, less qualitative research has been done. The overall aim of the study is to explore how disease management programs are implemented within primary care settings in the Netherlands; this paper focuses on the early development and implementation stages of five disease management programs in the primary care setting, based on interviews with project leadership teams.MethodsEleven semi-structured interviews were conducted at the five selected sites with sixteen professionals interviewed; all project directors and managers were interviewed. The interviews focused on each project’s chosen chronic illness (diabetes, eating disorders, COPD, multi-morbidity, CVRM) and project plan, barriers to development and implementation, the project leaders’ action and reactions, as well as their roles and responsibilities, and disease management strategies. Analysis was inductive and interpretive, based on the content of the interviews. After analysis, the results of this research on disease management programs and the Chronic Care Model are viewed from a traveling technology framework.ResultsThis analysis uncovered four themes that can be mapped to disease management and the Chronic Care Model: (1) changing the health care system, (2) patient-centered care, (3) technological systems and barriers, and (4) integrating projects into the larger system. Project leaders discussed the paths, both direct and indirect, for transforming the health care system to one that addresses chronic illness. Patient-centered care was highlighted as needed and a paradigm shift for many. Challenges with technological systems were pervasive. Project leaders managed the expenses of a traveling technology, including the social, financial, and administration involved.ConclusionsAt the sites, project leaders served as travel guides, assisting and overseeing the programs as they traveled from the global plans to local actions. Project leaders, while hypothetically in control of the programs, in fact shared control of the traveling of the programs with patients, clinicians, and outside consultants. From this work, we can learn what roadblocks and expenses occur while a technology travels, from a project leader’s point of view.

Including citizens in institutional reviews: expectations and experiences from the Dutch Healthcare Inspectorate

Recent changes in the structure and policy context of Dutch health care have placed the issue of citizen participation high on the agenda of the Dutch Healthcare Inspectorate (IGZ), which conducts quality and safety reviews in medical practices and health‐care institutions. With a few exceptions, the potential role that citizens can play in the regulation of health‐care institutions is overlooked in research on patient/citizen participation in health care.

Developing patient portals in a fragmented healthcare system.

BACKGROUND Use of patient portals may contribute to improved patient health and experiences and better organizational performance. In the Netherlands, patient portals have gained considerable attention in recent years, as evidenced by various policy initiatives and practical efforts directed at developing portals. Due to the fragmented setup of the Dutch healthcare system patient portals that give patients access to information and services from across their providers are developed in inter-organizational collaboration. OBJECTIVE The objective of this paper is to identify and describe the types of collaborations, or networks, that have been established to develop patient portals in the Netherlands. Understanding the characteristics of these networks as well as the development of their respective portals enables us to assess the enabling and constraining effects of different network types on patient portal initiatives. METHODS We used qualitative methods including interview and documents analysis. In a first step, we interviewed eighteen experts and reviewed relevant national policy and strategy documents. Based on this orientation, we selected three networks we deemed to be representative of inter-organizational efforts to develop Dutch patient portals in 2012. In a second step, we interviewed twelve representatives of these patient portal networks and collected documents related to the portals. We applied content analytic techniques to analyze data from the three cases. RESULTS The three studied networks differed in their number and diversity of actors, the degree to which these actors were mutually dependent, the degree to which network governance was decentralized, and the dynamics of the network structures. We observed that the portals developed in networks displaying the highest degree of these characteristics experienced most difficulties associated with developing patient portals - such as achieving interoperability, successful implementation, regulatory complaisance, and financial sustainability. Yet, at the same time, the portals developed in these networks may hold the highest functionality to patients, since they can consolidate information and services from a broad array of health service providers. CONCLUSIONS The early empirical evidence provided here indicates that effective development of patient portals begs a tradeoff between envisioned functionality and ease of development.

Identifying and explaining the variability in development and implementation costs of disease management programs in the Netherlands.

BackgroundIn the Netherlands, disease management programs (DMPs) are used to treat chronic diseases. Their aim is to improve care and to control the rising expenditures related to chronic diseases. A bundled payment was introduced to facilitate the implementation of DMPs. This payment is an all-inclusive price per patient per year for a pre-specified care package. However, it is unclear to which extent the costs of developing and implementing DMPs are included in this price. Consequently, the organizations providing DMPs bear financial risk because the development and implementation (D&I) costs may be substantial. The aim of this paper is to investigate the variability in and drivers of D&I costs among 22 DMPs and highlight characteristics that impact these.MethodsThe data was analyzed using a mixed methods approach. Descriptive statistical analysis explored the variability in D&I costs as measured by a self-developed costing instrument and investigated the drivers. In addition, qualitative research, including document analysis and interviews, was conducted to explain the possible underlying reasons of cost variability.ResultsThe development costs varied from €5,891 to €274,783 and the implementation costs varied from €7,278 to €387,879 across DMPs. Personnel costs were the main component of development. Development costs were strongly correlated with the implementation costs (ρ = 0.55), development duration (ρ = 0.74), and number of FTEs dedicated DMP development. Organizations with large size and high level of care prior to the implementation of a DMP had relatively low development costs. These findings were in line with the cross-case qualitative comparison where programs with a longer history, more experienced project leadership, previously established ICT systems, and less complex patient populations had lower D&I costs.ConclusionsThere is wide variation in D&I costs of DMPs, which is driven primarily by the duration of the development phase and the staff needed to develop and implement a DMP. These drivers are influenced by the attributes of the DMP, characteristics of the target population, project leadership, and ICT involved. There are indications of economies of scale and economies of scope, which may reduce D&I costs.

AMIA's code of professional and ethical conduct

AMIA, as other professional societies, has a long-standing interest in promoting a strong ethical framework for its membership. This white paper presents the latest AMIA Code of Professional and Ethical Conduct. It was approved in November of 2011 by the AMIA Board of Directors. This document constitutes a revision of, and update to, the first code, approved and published in J Am Med Inform Assoc 1 in 2007. In an effort to keep pace with the fields vitality, the code presented here is intended to be a dynamic document, and will continue to evolve as AMIA and the field itself evolve. AMIA will publish on its web site this version of the code as part of a process that seeks ongoing response from, and involvement by, AMIA members. The code is meant to be practical and easily understood, so it is compact and uses general language. Unlike the ethics codes of some professional societies, the AMIA code is not intended to be prescriptive or legislative; it is aspirational, and as such, provides the broad strokes of a set of important ethical principles especially pertinent to the field of biomedical and health informatics. The code is organized around the common roles of AMIA members and the constituents they serve—including patients, students, and others—and with whom they interact. The AMIA Board and the AMIA Ethics Committee encourage members to offer suggestions for improvements and other changes. In this way, the code will continue to progress and best serve AMIA and the larger informatics community. Codes of ethics for professionals present special challenges in conception and execution. The goal of this code is to lay out the core values of this profession in a way that inspires AMIA members to acknowledge and embrace these values. While the crafting of the code involved many …

Digital ‘solutions’ to unhealthy lifestyle ‘problems’: the construction of social and personal risks in the development of eCoaches

In this article, we critically interrogate the discourses used during the development of eCoaches. We draw on data from a four-phase qualitative study about the ethical, legal and social aspects of using digital technologies to encourage lifestyle changes that was conducted in the Netherlands between March 2014 and May 2015. The four phases of this study included interviews, document analysis, participant observation, interventionist workshops on legal issues and a forward-looking techno-ethical scenarios workshop. We use data from the first three phases to identify how both health-related and technology-related risks for individuals and society were constructed. There were multiple, concurrent references to risk in the programme and project documents, as well as in the various discussions we observed among designers. We discuss three major constructions of risk found in these discourses: risks to the health system, risks of developing an ineffective eCoach and new risks to the individual user. We argue that these three constructions feed particular norms and values into the design of the resultant eCoaches, whereby notions such as effectiveness, social solidarity, responsibility for health and individual autonomy (and thus, our understanding of what constitutes ‘risk’) are redefined. Understandings of risk may shift once users begin engaging with these eCoaches in practice. Future research should therefore also examine (discursive) constructions and understandings of digital risk from the perspective of the users of such technologies.