Public engagement with health research: Development of knowledge and attitude scales
This dissertation reports on the development of two measures useful to help understand how health research does - and does not - get used by the public. This project is important for several reasons. First, most major advances in health since the beginning of the 20th century are due to the application of new knowledge and technologies such as immunizations and preventive medicine. Also, there is an ongoing shift in the burden of disease away from infectious diseases and toward chronic diseases requiring increased patient self-management as well as behavior and lifestyle changes. Finally, a continuing emergence of self-care protocols as basic treatment practices combined with cutbacks in health services compound the need for a public that is fully engaged with the products of health research.
This work is conducted within a theoretical framework that posits health literacy as a primary tool individuals use to engage with the products of scientific research on health. Building upon that theoretical framework, this dissertation reports on the development of a method to assess the level of knowledge based on scientific research on health, or health research, that a person holds. Second, as attitudes are also important in terms of changing behavior to improve health, a measure to assess attitudes toward health research is developed. Both measures were tested in China, Mexico, Ghana, and India as part of a larger research effort conducted by the World Health Organization and local partners.
This work has developed two measures that will provide new information about public engagement with health research and health literacy. In addition to the central methodological developments, key lessons from this research are related to the role of health literacy in relation to the process of public engagement with health research, the design of international research projects, and the role of strict methodological guidelines to ensure validity and reliability. When applied, that knowledge can enhance efforts to promote public engagement with health research and, over the long-term, improve public health.