Search

Background: Patient involvement is widely acknowledged to be a valuable component in health technology assessment (HTA) and healthcare decision making. However, quantitative approaches to ascertain patients' preferences for treatment endpoints are not yet established. The objective of this study is to introduce the analytic hierarchy process (AHP) as a preference elicitation method in HTA. Based on a systematic literature review on the use of AHP in health care in 2009, the German Institute for Quality and Efficiency in Health Care (IQWiG) initiated an AHP study related to its HTA work in 2010., Methods: The AHP study included two AHP workshops, one with twelve patients and one with seven healthcare professionals. In these workshops, both patients and professionals rated their preferences with respect to the importance of different endpoints of antidepressant treatment by a pairwise comparison of individual endpoints. These comparisons were performed and evaluated by the AHP method and relative weights were generated for each endpoint., Results: The AHP study indicates that AHP is a well-structured technique whose cognitive demands were well handled by patients and professionals. The two groups rated some of the included endpoints of antidepressant treatment differently. For both groups, however, the same six of the eleven endpoints analyzed accounted for more than 80 percent of the total weight., Conclusions: AHP can be used in HTA to give a quantitative dimension to patients' preferences for treatment endpoints. Preference elicitation could provide important information at various stages of HTA and challenge opinions on the importance of endpoints.

Background: The Institute for Quality and Efficiency in Health Care (IQWiG) was established in 2003 by the German parliament. Its legislative responsibilities are health technology assessment, mostly to support policy making and reimbursement decisions. It also has a mandate to serve patients' interests directly, by assessing and communicating evidence for the general public., Objectives: To develop a priority-setting framework based on the interests of patients and the general public., Methods: A theoretical framework for priority setting from a patient/consumer perspective was developed. The process of development began with a poll to determine level of lay and health professional interest in the conclusions of 124 systematic reviews (194 responses). Data sources to identify patients' and consumers' information needs and interests were identified., Results: IQWiG's theoretical framework encompasses criteria for quality of evidence and interest, as well as being explicit about editorial considerations, including potential for harm. Dimensions of "patient interest" were identified, such as patients' concerns, information seeking, and use. Rather than being a single item capable of measurement by one means, the concept of "patients' interests" requires consideration of data and opinions from various sources., Conclusions: The best evidence to communicate to patients/consumers is right, relevant and likely to be considered interesting and/or important to the people affected. What is likely to be interesting for the community generally is sufficient evidence for a concrete conclusion, in a common condition. More research is needed on characteristics of information that interest patients and consumers, methods of evaluating the effectiveness of priority setting, and methods to determine priorities for disinvestment.

There is some evidence that involving patients in the development of health information can increase the relevance and understandability of this information. The German Institute for Quality and Efficiency in Health Care (IQWiG) publishes easy-to-understand and freely accessible evidence-based health information on its bilingual website gesundheitsinformation.de / informedhealthonline.org. The aim of the Institute is to determine the information needs of the general public and patients, and to take those needs into account when producing its health information. One way in which this is done is by carrying out online surveys before the information is produced, asking the users of the website about their level of interest in various aspects of a topic. In this article we present two examples of such surveys - on the topics of "endometriosis" and "skin cancer screening and prevention" - as well as the results of these surveys and how the results influenced the contents of the health information produced. Our experience with a total of seven surveys suggests that online surveys can be a helpful additional tool to identify information gaps and determine information needs and areas of special interest. In addition, surveys provide a way to interact with the users of the website. In their current form, however, online surveys also have methodological limitations that need to be considered when developing these surveys and interpreting their results., (Copyright © 2010. Published by Elsevier GmbH.)

Objective: To define evidence-based health information and the conceptual framework and methodology of Germany's national health information website., Methods: Description of the political and methodological processes in the development of the website Gesundheitsinformation.de/Informed Health Online developed by the Institute of Quality and Efficiency in Health Care (IQWiG)., Results: Autonomy, empowerment and health literacy were useful theoretical concepts to guide the definition of evidence-based health information and the objectives and methodologies used for developing this website. These choices had direct practical consequences for the patient information., Conclusion: Evidence-based patient information involves the use of evidence and systematic methodologies in several facets of information provision. These include a process of information development that minimises bias, evidence as the information basis for the content, and the use of evidence-based communication techniques. To be empowering and support patient autonomy, information should be patient-centred and non-directive., Practice Implications: Health websites are communication interventions which can have very different objectives and methods. A conceptual framework can help guide these choices and provide a basis for subsequent evaluation.

Objective: The decision to start disease-modifying antirheumatic drugs in patients with recent-onset undifferentiated arthritis (UA) is complicated by a varied natural disease course in which the disease in one-third of patients progresses to rheumatoid arthritis (RA), whereas 40-50% of patients experience spontaneous remission. Recently, a prediction rule was developed to estimate the chance of progression to RA in individual patients presenting with UA. This study investigates the accuracy of this prediction rule in independent cohorts of patients with UA., Methods: In 3 cohorts of patients with recent-onset UA, from the UK, Germany, and The Netherlands, the prediction score and the corresponding chance of developing RA were calculated. These data were compared with the observed disease outcome after > or =1 year of followup. Positive predictive values (PPVs) and negative predictive values (NPVs) were calculated and the overall discriminative ability of the prediction rule was assessed using area under the receiver operating characteristic curves (AUCs)., Results: Since data on the severity of morning stiffness were not available in all validation cohorts, the prediction rule was rederived with the duration of morning stiffness as a substitute. The AUC for this rule was 0.88 (SEM 0.015). For each validation cohort, the AUC was 0.83 (SEM 0.041), 0.82 (SEM 0.037), and 0.95 (SEM 0.031) in the British, German, and Dutch cohorts, respectively. The NPV (for a prediction score < or =6) in these 3 cohorts was 83%, 83%, and 86%, respectively; the PPV (for a prediction score > or =8) was 100%, 93%, and 100%, respectively., Conclusion: The recently derived prediction rule, when applied to 3 independent cohorts of patients with UA, has an excellent discriminative ability for assessing the likelihood of progression to RA. Application of this rule will allow individualized treatment decision-making for patients with UA.

The Institute of Quality and Economy in Healthcare (Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen; IQWiG) was established to strengthen the scientific basis for decision making in German healthcare services, and to provide a scientific resource for the German healthcare community and general public. The Institute is committed to supporting informed decision making, patient choice, and patient autonomy. One of the key activities of the IQWiG is the provision of easily understandable consumer and patient information. These are made available to the general public via a website. The Institute's approach to health communication is based on goals and techniques of patient empowerment, scientific and health-specific knowledge (literacy building), health promotion, and evidence-based medicine. The promotion of general health- and scientific knowledge (critical health information, or health literacy) is strongly associated with good health outcomes and patient empowerment in several ways. Unlike other factors that determine health outcome and patient empowerment, health literacy is modifiable. In its role as provider of consumer and patient information, the IQWiG focuses therefore on continuous promotion and strengthening of health literacy in the German population. IQWiG intends to pursue this aim by means of publications and website activities, as well as by own academic work and projects that address scientific and health literacy at the population level. (Full English version online at www.iqwig.de)