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Self-Management of Heart Disease: A New Approach to Participatory Medicine

Posted Jul 15 2009 8:10pm

The idea of persuading or empowering consumers to take more responsibility for their own health is broadly taking root (see: "Participatory Medicine" and Its Relationship to Clinical Lab Testing ). The well-established previous name for this movement is Health 2.0, which emphasizes the role of the web in providing broad access to information about health and disease. A recent article on the web discussed the role of patients in helping to manage their own heart disease (see: Tackling Heart Disease Together or Alone: The Behavioural Science of Self-Management ). Below is an excerpt from it with boldface emphasis mine:

Heart disease is the leading killer in the U.S. and throughout most of Europe. People’s behaviour can protect and reduce risk of heart disease, and interventions to help people “self-manage” exist. But what is the best way to “self-manage”? ... One thorough definition is that it relates to activities undertaken by the person who has a “chronic” or “long-term” condition such as asthma, multiple sclerosis or arthritis. These activities include problem solving, decision making, resource utilization, the formation of a patient-provider partnership, action planning and self tailoring. Interventions or programmes are designed around these activities to help support people to manage their own illness. The idea is that following attendance at a programme of some sort, the activities and skills learned will be continued to be used, thus improving health, maintaining fitness and/or quality of life and reducing the risk of future acute episodes of ill health.... Researchers at the University of Michigan explored the effect of the format of a self-management intervention for women with heart disease by comparing a “self-directed” programme to a “group” programme to a control group....The results revealed a remarkable difference. Eighteen months after the intervention, data were collected. For the “self-directed” intervention, cardiac symptoms such as chest pain and dizziness were reduced in number, frequency and impact. For the “group” intervention, weight loss and exercise capacity (in terms of how far a person can walk within a set time) were improved. This is despite the fact that the information and instructions provided in both programmes were the same.... Our health and its care is now a collaborative endeavour in which we are involved actively and with responsibility. Self-management is increasingly included in health policies.

The formation and success of groups and programs for weight-loss are well-documented (see, for example: Statewide Weight-Loss Competitions Achieve Record of Success ). Moreover, there are a number of web sites designed to assist diabetics in the self-management of their disease such as Diabetes Self-Management. It seems to me that it would be relatively easy to design web sites specializing in self-help for patients with chronic heart disease. However, I must admit that I had never encountered such sites and a quick search of the web did not turn up any of them. This is probably understandable given that the category of heart disease is very broad and also that liability issues could arise if consumers turned to self-help programs instead of seeking local physician care. Nevertheless, I could envision health systems developing chronic heart programs as extensions of their own local acute and chronic care programs on the web to facilitate greater patient engagement in self-care. I would be interested in feedback from readers of this blog about whether programs such as these do exist with some details.

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