Government Influence on Patient Organizations

Patient organizations increasingly play an important role in health care decision-making in Western countries. The Netherlands is one of the countries where this trend has gone furthest. In the literature some problems are identified, such as instrumental use of patient organizations by care providers, health insurers and the pharmaceutical industry. To strengthen the position of patient organizations government funding is often recommended as a solution. In this paper we analyze the ties between Dutch government and Dutch patient organizations to learn more about the effects of such a relationship between government and this part of civil society. Our study is based on official government documents and existing empirical research on patient organizations. We found that government influence on patient organizations has become quite substantial with government influencing the organizational structure of patient organizations, the activities these organizations perform and even their ideology. Financing patient organizations offers the government an important means to hold them accountable. Although the ties between patient organizations and the government enable the former to play a role that can be valued as positive by both parties, we argue that they raise problems as well which warrant a discussion on how much government influence on civil society is acceptable

How to integrate individual patient values and preferences in clinical practice guidelines? A research protocol

Background Clinical practice guidelines are largely conceived as tools that will inform health professionals' decisions rather than foster patient involvement in decision making. The time now seems right to adapt clinical practice guidelines in such a way that both the professional's perspective as care provider and the patients' preferences and characteristics are being weighed equally in the decision-making process. We hypothesise that clinical practice guidelines can be adapted to facilitate the integration of individual patients' preferences in clinical decision making. This research protocol asks two questions: How should clinical practice guidelines be adapted to elicit patient preferences and to support shared decision making? What type of clinical decisions are perceived as most requiring consideration of individual patients' preferences rather than promoting a single best choice? Methods Stakeholders' opinions and ideas will be explored through an 18-month qualitative study. Data will be collected from in-depth individual interviews. A purposive sample of 20 to 25 key-informants will be selected among three groups of stakeholders: health professionals using guidelines (e.g., physicians, nurses); experts at the macro- and meso-level, including guideline and decision aids developers, policy makers, and researchers; and patient representatives. Ideas and recommendations expressed by stakeholders will be prioritized by nominal group technique in expert meetings. Discussion One-for-all guidelines do not account for differences in patients' characteristics and for their preferences for medical interventions and health outcomes, suggesting a need for flexible guidelines that facilitate patient involvement in clinical decision making. The question is how this can be achieved. This study is not about patient participation in guideline development, a closely related and important issue that does not however substitute for, or guarantee individual patient involvement in clinical decisions. The study results will provide the needed background for recommendations about potential effective and feasible strategies to ensure greater responsiveness of clinical practice guidelines to individual patient's preferences in clinical decision-making

Tinkering as Collective Practice:

The values of patient autonomy and community participation have become central in health care. However, care practices involve a plurality of possibly conflicting values. These values often transgress the borders of the individual professional–client relationship as they involve family members, other professionals and community organisations. Good care should acknowledge this relational complexity, which requires a collective handling of the tensions between values. To better understand this process, we draw on [Mol, A. 2008. The Logic of Care: Health and the Problem of Patient Choice. Routledge; Mol, A., I. Moser, and J. Pols. 2010a. Care in Practice: On Tinkering in Clinics, Homes and Farms. Transcript Verlag.) by developing the notion of collective tinkering. An ethnographic study was conducted in two teams in community housing services for people with Intellectual Disabilities and Severe Mental Illness. Collective tinkering is analysed (1) within teams; (2) between professionals, family members and professionals from different organisations providing care for the same client; and (3) in organising practices for a collective of clients. Collective tinkering involves assembling goods into a care practice, attentively experimenting with these care practices, and adjusting care accordingly within a collective of those involved in care for a particular client (group). When collective tinkering does not occur, the stakeholders excluded (e.g. clients or family members) may experience poor quality of care.</p