Effective Consumers.  Expert Patients

No matter what it’s called, the spirit behind the words is similar - people are becoming more involved in their health and in the way health care is delivered. And there’s a lot of interest by health researchers to understand why they do it, how they do it, and, if it works, how others can learn to do it.

In the past few decades, there has definitely been a movement towards the idea that people participating in health care can help to improve health and health care. This participation, it seems, can occur at many levels, from a system level to an individual level. At a system level, people may be speaking to their Members of Parliament to advocate for better access to medications and physiotherapy services, or joining hospital committees to ensure the needs of patients are met. At a research level, people may be participating in research studies, and consulting with research scientists about top priorities for research or how to ensure that research results are used. At an individual level, people may be participating in their care by making decisions about which health care professionals they see and which medications they take, or by monitoring their pain and taking Tai Chi classes.

This latter level of participation - at an individual level - is garnering much attention. There has been increasing efforts to empower people to participate in their own health. This focus is especially true in people who have a chronic disease, such as rheumatoid arthritis. People who live with their diseases on a daily basis could potentially see benefits everyday by managing their own diseases. Many programmes in Canada and abroad have been designed to teach consumers about their disease and how to manage it; an example is the Arthritis Self Management Program. One of the main ideas behind these types of programmes is that people who manage their disease well will likely do so because they have certain skills or behaviours, attitudes and beliefs. With those skills, they are effective or experts at managing their disease, hence, the phrases ‘effective consumers’ or ‘expert patients’.

Unfortunately, it is not clear which skills, behaviours, attitudes or characteristics, effective consumers should have. To be effective, should the person be able to search the Internet for health information? Should they be able to balance the harms and benefits of a drug to make a decision about the drugs they take? Should they be able to communicate well with their families about their diseases? If these characteristics are essential to be effective, then how do we tell if someone has these skills? Should we time how quickly people find information on the Internet? Should we simply ask people if they think they communicate well with their families? Not only are the characteristics that effective consumers should have not clear, but it is also not clear how to measure those characteristics to pronounce them ‘effective’.

For this reason, members of the Cochrane Musculoskeletal Group with researchers at the University of Ottawa and University of Queensland, Australia are investigating what makes and how do we measure an effective consumer. It promises to be an exciting project. But even more research is needed and more dialogue is necessary. Despite our present uncertainties, it is encouraging that the consumer participation movement is moving in the right direction.

For more information about the Effective Consumer project and the work of the Cochrane Musculoskeletal Group, contact Nancy Santesso at santesso@uottawa.ca .