All aspects of the research were approved by a university research ethics board and all participants provided written informed consent prior to participating in the conference.
Fifteen individuals (six men and nine women) were recruited from existing databases of persons with T2D who had indicated interest in participation in research and projects. In accordance with consensus conference procedures, participants were selected because they were confident and autonomous and thus able to participate in an interactive forum (Nielsen et al., 2006
). They were not necessarily representative of the Canadian T2D population, but did represent a range of time since diagnosis (less than a year to more than 30 years). All participants were older than 40 years. No other demographic information was collected. It was important to purposefully select people who could contribute to the overall aim of the conference (i.e., to develop an intervention). When first contacted, potential participants were told of the purpose and structure of the conference, including their role as members of the lay panel and the intent of the preparatory day and conference proceedings. Participants were informed that through group nomination on the preparatory day, a subgroup would be selected to develop final recommendations, as recommended for consensus conferences. Participants received a $100 honorarium and travel costs were reimbursed.
Seven T2D experts were identified by members of the research team. They represented a range of diabetes specializations including exercise management, cardiovascular risk factors, community-based lifestyle interventions, healthy weight strategies, glycemic index, social, environmental and cultural interactions, and exercise motivation. All were active researchers with PhD degrees and two also had medical degrees and were practicing physicians in addition to being researchers. Panel members received a $100 honorarium and travel costs were covered.
The process followed consensus conference guidelines and occurred in three stages: a lay panel planning meeting, the conference, and a lay panel final meeting (Nielsen et al., 2006
The lay panel met with the moderator 1 month before the conference to develop a question for each of the seven diabetes experts. Participants also chose eight individuals amongst themselves to comprise a lay panel subgroup whose task was to develop the final recommendations after the conference. A professional facilitator moderated all meetings to ensure a fair and independent process unbiased by a research agenda.
Participants were told the purpose of the conference was to generate recommendations for interventions that they believe would be appropriate and feasible for others with T2D in Alberta. Participants were introduced to the consensus conference approach, including the structure and goal of the conference. Research team members gave two presentations on current best practices in nutrition and physical activity interventions for T2D and the strengths and weaknesses of current education programs and interventions. Following the presentations, the members of the research team left. With the support of the facilitator, lay panel participants developed specific questions for each of the experts. Immediately following the planning meeting, the questions were given to members of the expert panel so they could prepare their presentations in advance of the conference.
The seven questions developed were:
- How do external factors, such as genetically modified foods, food additives, medications, and pesticides, contribute to obesity and diabetes susceptibility?
- Tell us trusted internet sources that have proven to be the most effective with behavior change in weight management for all income levels.
- What do you have to do to keep physical activity and nutritional interventions effective and adaptable in the long-term?
- Can you recommend exercise or fitness programs that incorporate a consideration of the Alberta climate and a range of physical and financial limitations of participants?
- Please explain the workings of the glycemic index and how to use this information to create an effective diet.
- How do we promote awareness of diabetics and current issues to shape positive attitudes of the community and families of diabetics
- What are the key behaviors required to produce compliance to regular exercise programs and what kinds of things provide motivation, combat depression and develop the self-discipline to sustain long-term diabetic health?
The conference day had two sessions. In the morning, each of the experts gave a presentation answering the question developed for him or her by the lay panel. This session was public and diabetes educators, health promotion specialists, and the public were invited. Approximately 50 people attended including members of the research team. The facilitator moderated the session and following each presentation there was a question and answer period.
In the afternoon, only members of the lay and expert panels and the facilitator were present. During this session the facilitator moderated discussion by the expert and lay panel members as they generated ideas and suggestions about T2D interventions.
LAY PANEL MEETING
The day following the consensus conference, the lay panel subgroup, in a meeting moderated by the facilitator, produced a document outlining a final set of recommended strategies and intervention elements.
The results presented are those developed by the lay panel, not the researchers. Three overarching themes were identified: diagnosis, education, and support. Participants also advocated that “as a group we have to be more vocal.” Rather than express feelings of victimization, participants acknowledged they needed to take an active part in disease management and believed the conference was a valuable step in that process. Participants also recommended that the word “program” replace “intervention” because the word intervention is potentially misleading for the lay person and associated with detrimental behaviors such as drug use and smoking. They also suggested the development of programs not only for diabetics (their preferred term) but also for researchers who may have specific disease knowledge but lack experience of living with the disease and thus also in need of education.
The panel suggested that diagnosis begins with increased disease awareness among the general public and within the diabetic community and that lifelong self-monitoring starts immediately following diagnosis. Specific recommendations made ranged from mass media campaigns to increase awareness of where to access information about T2D to free community blood sugar testing clinics. Another key suggestion was to have better first points of contact (e.g., with pharmacists or physicians) on where to get local support and education.
Education recommendations included suggestions for the person with diabetes, for researchers, and for the community.
The panel proposed periodic refresher courses to provide progressive and updated diabetes education. The current method of providing information and counseling when first diagnosed was considered ineffective. The lay panel advocated for ongoing behavioral counseling to aid with overcoming barriers to exercise (e.g., time management), managing appetite, and similar issues. There is also a need for diabetes specific exercise programs. Finally, the psychological effects of diabetes, such as depression, needs to be part of education. Furthermore, some co-morbid conditions require medication and help is needed on how to manage diabetes in conjunction with co-morbidities and associated treatment. Thus, the recommendations encompass ongoing education across the behavioral and psychological aspects of diabetes.
There should be more face to face time between those with diabetes and researchers to allow for information exchange. Researchers may learn about what diabetics believe are the pressing issues that need to be addressed. Diabetics can learn about the latest research findings. As written in the summary statement “it’s a two way street – researchers/stakeholders will know what the public wants and the public will know what the researchers/stakeholders are doing.” The consensus conference was given as an example of such a meeting. It was also recommended that physicians need better training and ongoing education on diet and exercise. In particular, it was perceived that family physicians were not prepared to provide behavioral counseling.
The community is also in need of ongoing education. The panel defined community members as family, employers, and general community members. Businesses (e.g., food stores, restaurants) with diabetic clients should be educated regarding the specialized needs of diabetics. One suggestion was that adult continuing education classes could be provided. Even if such classes already exist, there is a lack of awareness of them among persons with diabetes. Within the Alberta context it was reported that many online resources were out of date.
The theme of support overlapped somewhat with the themes of diagnosis and education, but the panel believed it to be distinct. One of the key comments was “you are your own support”; that is, diabetics should be encouraged to take responsibility for their own support (e.g., by joining a peer support group). The idea of ongoing education was reiterated but additional ideas were included such as greater media attention. The panel pointed out that members of the media were invited to the conference but none showed up. They believed this highlighted the problem of promoting discussion and raising awareness around T2D. The lay panel reported learning new information by participating in the conference (e.g., the importance of checking blood sugar after exercise was new information for the majority of participants) but it is a challenge to get this information to the general public. “One stop shopping” is needed to optimize access to information and training.