Completed Research Project
Consumer health impact statements: a review of current practices
Investigators: Aoun S, McConigley R. Currow D, Shelby-James T
Funding: Commonwealth Department of Health and Aging
Administering Institution: Flinders University
This discussion paper explored methods of describing consumers’ experiences of diseases and symptoms. In particular, it focused on the use of health impact statements to assist with description of specific diseases or symptoms. Possibilities for developing the use of impact statements to assist with the Pharmaceutical Benefits Advisory Committee (PBAC) drug recommendation process were explored.
A search of a literature in the areas of health, medicine and pharmacology was conducted. Health related databases were searched for professional literature and key journals were hand searched. Grey literature was searched for reports or related documents. The websites of evidence based practice organisations were searched. Personal communication with relevant organisations and government departments was undertaken in the form of email requests for information. Printed and Internet sources of popular literature were also examined for relevancy.
There are a number of effective ways of gathering information about the impact that a disease or symptom has. Research reports of studies about the experiences of people with the disease/symptom in question can be useful. Both qualitative and quantitative research methods are useful for providing a complete picture. The popular literature may also be useful, although it can be more difficult to find detailed information relating to specific areas and it is more difficult to verify the accuracy of information.
Health impact statements are widely used in the environmental health arena and are becoming more accepted in areas such as public health. Health impact statements consider the input of people who are likely to be affected by a project, relevant experts and other appropriate sources of information. The impact statement has five key parts: (1) screening; (2) scoping the problem; (3) assessment of health impacts; (4) decision making; (5) evaluation. Few impact statements that related to a specific disease or symptom were found. The Joint Epilepsy Council of Australia (2007) completed a brief report that describes the impact of living with epilepsy. This report demonstrates the effectiveness of a concise statement to describe the effects of living with a disease.
Consumer participation in health care planning and policy making is considered desirable. However, there is little evidence to guide the process of engaging consumers in the process. There is also little evidence to suggest that methods of consumer involvement in healthcare that have been tried to date have been effective or useful. To date, consumers have had little input into pharmaceutical policy making in Australia or elsewhere. Several models of consumer participation in pharmaceutical decision making have been trialled but none have been fully evaluated. Consumer representatives on committees, calling for public comment and consumer advisory boards are methods that are currently used in different settings. It is possible that the development of health impact statements may assist in increasing consumer input into decision making by increasing understanding of the issues facing consumers.
The findings of this paper suggest that there is an argument for adopting a more consumer focused approach to deliberating on medications suitable for use by people with life threatening illnesses. However, there is no clearly articulated method of engaging consumers in the process. Developing an impact statement template suitable for use in this area would be a viable adjunct to the current PBAC submission process for medications that are aimed at a non-typical population. As such it is recommended that: (1) a health impact assessment template is developed for use in this area; (2) the template is tested for validity; (3) a trial of the validated template is conducted.
