a1 National Institutes of Health
a2 Institute for Quality and Efficiency in Health Care, Germany
a3 Universities of Exeter and Plymouth
a4 Institute for Quality and Efficiency in Health Care, Germany
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.
(Online publication October 17 2011)
Ms. Bastian is now at the National Center for Biotechnology Information, National Library of Medicine, National Institutes of Health, Bethesda, Maryland, and Dr. Nasser is now at the Peninsula College of Medicine and Dentistry, Universities of Exeter and Plymouth, England. We thank other former and current colleagues in the Health Information Department who contributed in various ways to the processes of topic selection through these developmental stages, and in particular Professor Peter T. Sawicki, the Institute's Director through this process.