What do we need to know?

We need a better understanding of why some patients are unable to engage or benefit from educational and self-management efforts (81). More attention should also be paid to the role that family or caregivers should play in these cases (82).

Another major question that has not been addressed relates to the process of self-management, specifically the elements that bring about the beneficial outcomes. The recent evaluation of self-management support programs conducted by RAND (83) suggests a chain of self-management support effect, specifying that: a) as patients participate in evidence-based self-management programs and interact with health professionals who use self-management support strategies, they become more knowledgeable and have higher self-efficacy; b) this influences their behaviour as well of the behaviour of their health providers; c) patients attain better disease control leading to improved health outcomes and higher satisfaction levels; and d) better healthcare utilization takes place as well as improved workplace productivity and lower costs. Specific aspects within this chain of effect that need further investigation relate to why and how disease control and health outcomes become improved through self-management. It would also be worthwhile to explore the role that socio-economic status, baseline educational level and ethno-cultural issues play in these cases.

The current understanding of how this process unfolds is that when patients acquire new knowledge and skills and gain higher self-efficacy in their ability to carry out behaviours to achieve goals, their health status and outcomes improve. The major question warranting further research is: what are the core components that are necessary to bring about this improvement? Most self-management research studies showing positive results have utilized multiple strategies, making it difficult to delineate exactly which strategy has been the most effective in contributing to the change in behaviour or in bringing about the improvement in health status (84, 34, 85-87).

Other efforts have incorporated formal tools for the assessment of the degree of patient empowerment and “activation” for self-management. It would be important to validate those tools within the context of multiple chronic diseases (88-90)

Another area that needs to be addressed is on the development of realistic strategies and incentives for recruiting, training and retaining peer leaders for the community programs. Sponsoring organizations generally use a variety of recruitment strategies to interest people to become peer leaders. The majority of prospective leaders then successfully complete the necessary training workshops and approximately 60% lead programs. Within this 60% of leaders approximately 10% remain involved and become program champions. While successful in some aspects, there is a need to develop strategies to retain this valuable cadre of trained and skilled volunteers.

The research design commonly used in evaluating self-management interventions has involved longitudinal randomized controlled or a matched- group pre- and post program designs from base-line to four-six months. There has been little research providing information on the sustained effectiveness of these programs for longer periods of time, for example five to ten years. Having this valuable information would assist in determining the need for and types and scope of refresher and reinforcement programs.

The dissemination strategies used with self-management programs has been successful in reaching remote and rural communities and specific populations. However, these strategies may have problems with quality control and program fidelity. As with any program, trained peer leaders and health professionals may personalize and modify specific elements within the program, and observing and monitoring program delivery is difficult. Although quality control mechanisms can be implemented (e.g., program delivered by two leaders, four-day training workshops, and regular contact and support from program coordinators), there may be variation in the delivery. This is a serious concern because participants may not receive the benefits that occur when the intervention is delivered as it was planned.

From an organizational perspective there are ongoing challenges of how to make self-management programs accessible and attractive to the target populations. Successful dissemination strategies can make the programs accessible but people may be reluctant to participate. Multiple venues (small group, telephone, mail, and internet) do exist for these programs but information is needed to determine best combinations and concentrations given limited resources. Scenarios that may entice members of the target population to participate may include enhancing the choice of available programs (e.g., communities having a menu of self-management programs from which to choose such as: an Online Program, Chronic Disease, Chronic Pain, and Matter of Balance...etc.). Another potential strategy may be to have health professionals recommend and encourage patients to participate. Research has demonstrated that the probability of participating in a community Arthritis Self-Management Program increased 18 times when recommended by a health professional (91). The process of deciding to participate in a program is complex and an examination of marketing strategies used in the business world may shed illumination in this area.

Community self-management programs and the provision of self-management support strategies by health professions need to be combined into the overall health system. The term integration is commonly used to indicate how this combination should take place. However, this term is not easily defined and means something different to those who use it. To some, integration means that health professionals should coordinate the process while to others it may mean a sharing of effort and information to ensure patients receive consistent information and acknowledgement that they have an integral role in managing their health. Focused research on best ways to integrate self-management support activities into overall care would help boost overall effectiveness and ensure that self-management is not considered a disparate and complementary service.

A concern related to the provision of self-management support by health professions deals with ensuring a sustainable remuneration and payment formula for health professionals who use practice time to provide these activities. Consistent and burgeoning research findings are indicating that disease control and health outcomes are improved with self-management support strategies, but a system that negatively impacts one’s practice and livelihood will not be welcome or supported. Therefore the development of various administrative and organizational incentives for health professionals to engage in self-management support needs to be developed.