Abstract
BackgroundThe Analytic Hierarchy Process (AHP) is increasingly used to measure patient priorities. Studies have shown that there are several different approaches to data acquisition and data aggregation. The aim of this study was to measure the information needs of patients having a rare disease and to analyze the effects of these different AHP approaches. The ranking of information needs is then used to display information categories on a web-based information portal about rare diseases according to the patient’s priorities.MethodsThe information needs of patients suffering from rare diseases were identified by an Internet research study and a preliminary qualitative study. Hence, we designed a three-level hierarchy containing 13 criteria. For data acquisition, the differences in outcomes were investigated using individual versus group judgements separately. Furthermore, we analyzed the different effects when using the median and arithmetic and geometric means for data aggregation. A consistency ratio ≤0.2 was determined to represent an acceptable consistency level.ResultsForty individual and three group judgements were collected from patients suffering from a rare disease and their close relatives. The consistency ratio of 31 individual and three group judgements was acceptable and thus these judgements were included in the study. To a large extent, the local ranks for individual and group judgements were similar. Interestingly, group judgements were in a significantly smaller range than individual judgements. According to our data, the ranks of the criteria differed slightly according to the data aggregation method used.ConclusionsIt is important to explain and justify the choice of an appropriate method for data acquisition because response behaviors differ according to the method. We conclude that researchers should select a suitable method based on the thematic perspective or investigated topics in the study. Because the arithmetic mean is very vulnerable to outliers, the geometric mean and the median seem to be acceptable alternatives for data aggregation. Overall, using the AHP to identify patient priorities and enhance the user-friendliness of information websites offers an important contribution to medical informatics.Electronic supplementary materialThe online version of this article (doi:10.1186/s12911-016-0346-8) contains supplementary material, which is available to authorized users.
Highlights
The Analytic Hierarchy Process (AHP) is increasingly used to measure patient priorities
The patients in the individual AHP had lived an average of 16.9 years since the diagnosis of a rare disease, and the group members had lived an average of 19 years since diagnosis
We have demonstrated that the AHP can be used to identify patient priorities with regard to the information needs of people having rare diseases
Summary
The Analytic Hierarchy Process (AHP) is increasingly used to measure patient priorities. The aim of this study was to measure the information needs of patients having a rare disease and to analyze the effects of these different AHP approaches. The ranking of information needs is used to display information categories on a web-based information portal about rare diseases according to the patient’s priorities. The number of studies measuring patient priorities by using the Analytic Hierarchy Process (AHP) has increased significantly in the last few years [1]. We ranked the information needs of people having a rare disease and their relatives using different AHP methods. This ranking of information needs is transferred to display information categories on a web-based information portal about rare diseases in Germany. To present information categories on this website according to the user’s priorities, this paper consulted both experts in medical informatics and patient-reported outcomes
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