Dr. Peter Sargious Medical Director of Chronic Disease with Alberta Health Services, Calgary, AB

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1 On September 18 th, we held our webinar, the online Chronic Disease Self- Management Program A good choice for Canada? We weren t able to answer all the questions from attendees, so we asked our panelists to respond. We appreciate their generosity in providing the replies below. Our panelists: Dr. Peter Sargious Medical Director of Chronic Disease with Alberta Health Services, Calgary, AB Dr. Patrick McGowan Professor, School of Public Health and Social Policy, University of Victoria, BC Dr. Kate Lorig Director of the Stanford Patient Education Research Center, Stanford, CA Q: How do hospitalized patients reach you online? Patrick: If bedbound, from their laptop computer. Peter: Like any participant, hospitalized patients can use a personal laptop or, if available, a public computer within the hospital. Q: Are there any programs being developed to build capacity in self-management systems for providers? Patrick: Self-management support are the strategies and techniques that health professionals use with patients in their clinical practice which is different from the online program that is being provided to people with chronic health conditions. There are lots of articles and booklets describing self-management support. Perhaps the best resource would be the recent Health Council of Canada report entitled Self-management support for Canadians with chronic health conditions: A focus for primary health care. Unfortunately, I am not aware of any online

2 training available for health professionals. Peter: Within Alberta, there are a number of programs available to support providers to build their capacity in self-management support. The Alberta Health Services provincial CDM division has developed a number of online education modules including CDM 101 that emphasizes self - management support via relationship building and collaborative partnerships between patient and provider. This team is also building a health coaching initiative starting with some pilot projects later this year. There are currently over 45 Choices and Changes facilitators within the province. Q: Could you clarify what privacy legislation would be a barrier here when the participants are participating in person and are therefore agreeing to share what they share? Peter: In Alberta, there is no legislation that would be a barrier to participants sharing information with each other whether in person or online. In Alberta, we will be inviting people to participate in our CDM evaluation plan in which we intend to collect some personal information. As such, we are obliged to comply with the Health Information Act, which protects individual privacy when participating in research and evaluation. We are undertaking an extensive privacy impact assessment and ethics review to ensure individual participant data is protected at all times Q: Not all physicians accept patient empowerment. What efforts are there to facilitate the 'acceptance' of self-management programs by physicians? Peter: Identifying and utilizing physician champions go a long way. In Alberta, a selfmanagement marketing and communication plan is being implemented; spreading the word and continuing to show local outcomes evidence during stakeholder meetings, by our champions and via formalized communication channels helps to support adoption of new ways of practice including supporting patient self-management. Build upon changes in practice by early adopters! Toolkits are also being developed to assist self-management coordinators with promoting Better Choices, Better Health TM to health care providers, including physicians, and to demonstrate skills participants learn in the workshops. Health Council response: The Health Council of Canada s recent report on self-management support includes physicians as a target audience. Q: Is the average age of the online program younger than the group program?

3 Patrick: In BC, the average age of the 418 participants was 52 years. The average age of participants in the group program is about 10 years older. Peter: The mean age of the Canada-wide pilot was 47.7 years (46.9 years for Albertans). The mean age for those participating in Alberta s in-person workshops during was 64 years. Q: What would be the process for implementing a Canada-wide online program? Patrick: Purchase a license from Stanford and there is a cost payable to the US National Council on Aging. Hire an administrator, recruit mentors and facilitators (usually these are experienced CDSMP Leaders) and get them trained. This is all done online by the US national Council on Aging. It s about a 6-month process to get up and running. Q: Are you aware of any groups in Ontario that are working on the development of an online CDSMP program? Ontario Ministry of Health and Long-Term Care response: The Ontario Diabetes Strategy (ODS) has been funding Self-Management training programs for individuals and for health care providers across all 14 LHINs for the last several fiscal years. In , the ODS is expanding the Self-Management initiative to include individuals with all chronic diseases. The initiative will provide evidence-based self-management education and skills training to individuals with chronic diseases to better manage their condition and to health care providers across multiple sectors so they may better support their patients. Together, the self-management service provider (transfer payment) organizations across the province have submitted a proposal to the Ontario Ministry of Health and Long-Term Care to purchase an online license for Stanford s Chronic Disease Self-Management Program (CDSMP) to enhance access to self-management resources across the province. The ministry is currently reviewing the proposal. Q: Will online sessions be available in Punjabi and Chinese? Patrick: Stanford University develops these programs. I am not aware of current plans for the online program to be translated into Chinese or Punjabi in British Columbia. Q: Can you tell us about some of the topics/programs that were offered on-line? Patrick: Exactly the same topics that are included in the in-person small group program. You can Google the Stanford Chronic Disease Self-Management Program for details. The content for the group program is below:

4 Contents Session One Activity 1: Introduction - Identifying Common Problems Activity 2: Workshop Overview and Responsibilities Activity 3: Differences Between Acute and Chronic Conditions Activity 4: Using Your Mind to Manage Symptoms and Distraction Activity 5: Introduction to Action Plans Activity 6: Closing Session Two Activity 2: Dealing with Difficult Emotions Activity 3: Introduction to Physical Activity and Exercise Activity 4: Making an Action Plan Activity 5: Closing Session Three Activity 2: Better Breathing Activity 3: Muscle Relaxation Activity 4: Pain and Fatigue Management Activity 5: Endurance Activities Activity 6: Making an Action Plan Activity 7: Closing Session Four Activity 2: Future Plans for Health Care Activity 3: Healthy Eating Activity 4: Communication Skills Activity 5: Problem-Solving Activity 6: Making an Action Plan Activity 7: Closing

5 Session Five Activity 2: Medication Usage Activity 3: Making Informed Treatment Decisions Activity 4: Depression Management Activity 5: Positive Thinking Activity 6: Guided Imagery Activity 7: Making an Action Plan Activity 8: Closing Session Six Activity 2: Working With Your Health Care Professional and the Health Care System Activity 3: Looking Back and Planning for the Future Activity 4: Closing Q: Would you please speak about the general, as opposed to disease-specific, approach to the program? Patrick: There are both a generic (i.e., Chronic Disease Self-Management Program) as well as disease specific self-management programs (diabetes, chronic pain, arthritis /fibromyalgia). A frequently asked question about delivery of self-management group programmes is whether they should be disease specific or generic programmes. As co-morbidity is common in the aging population there is growing need for interventions that can be applied across chronic diseases. Therefore standard interventions requiring minimal adaptation to a particular disease have the potential to be more cost effective and less complicated to translate into practice than those requiring extensive adaptation to each condition. According to Barlow et al. (2002b: 369): Despite the unique nature of each condition and its typical manifestation, there are many commonalities in the nature of self-management tasks Thus, although disease specific selfmanagement is needed for certain aspects of chronic conditions (e.g., medication), there are opportunities for shared or generic approaches to self-management training for psychosocial, communication and lifestyle issues. Self-management approaches could combine dedicated modules for specific tasks (e.g., blood glucose monitoring for diabetes or analgesia in arthritis) with a generic approach for common issues. Combining these approaches could be a means of optimizing one s ability to effectively

6 self-manage across the course of the disease duration. However research has not addressed optimal times for each approach. Another frequently asked question relates to whether there are differences in effectiveness between disease-specific programs compared to more general self-management programs for participants with specific conditions. The study conducted by Lorig, Ritter and Plant (2005) compared the results of the Arthritis Self-Management Program with those of the Chronic Disease Self-Management Program, a general programme, and found both had positive effects, with the disease-specific programme having advantages over the more generic programme. However, as both programmes had positive effects, the more general programme was considered a viable alternative. Health Council response: Our report on self-management support also considers this issue in the context of multi-morbidity. Q: For mental illness patients, do you find they need to be at a certain stage of recovery from their illness before they can be candidates for Self-Management? Kate: No. People can come any time as long as they can appropriately interact in a group for 2.5 hours. Q: Does the online CDSMP include mental health issues e.g., depression, bipolar disorder, schizophrenia? If so, do you believe this will address the issue of stigma as a barrier to accessing health care services? Kate: Stigma is addressed in the book people get with the course. If people want to discuss stigma there are ample prompts and they can do this in the discussion center. Because the course is self-tailored, that is people discuss what they wish, each course is a little different. Q: Do you have any information about the success (or not) of using online workshops to reach older populations? Kate: In all of our studies we have controlled for age in our analyses and at no time have we seen any differences in outcomes that were influenced by age. Q: Can participants track their progress and can they compare their outcomes with other participants?

7 Kate: They can track their exercise progress by keeping an on-line exercise log. They cannot compare themselves to others in this way. Q: What are the start-up costs and budget for annual operations? Patrick: In BC, the initial start-up and training costs for our administrator, mentors and facilitators for a 3-year period was $85,000. After the initial 3-years period, there is a cost per workshop fee depending on the number of workshops implemented. Peter: In Alberta, total start-up costs have not been fully determined as we are currently negotiating contract fees, but we are estimating between $ K. Costs include the start-up services of a Canadian-based server ($50K) as well as training fees (mentors, facilitators, and our administrators), NCOA workshop fees ($5K for up to 20 /year, costs associated with NCOA IT embedding our evaluation tools into the database, staffing, marketing, participant book purchases etc.). Ongoing costs would include the Canadian server hosting fee ($30K), ongoing training, workshop costs, staffing, books etc. Q: Who funds this In Canada? Patrick: At present no-one funds this program for the whole of Canada. Each provincial jurisdiction needs to fund its own health programs (health is a provincial responsibility). From my perspective, it would be fantastic to collaborate with a national body to fund the program for the whole of Canada. Q: Is there a cost to participants? Patrick: In BC there is no cost to participants. Peter: In Alberta there will not be a cost to participants. Q: Are we limiting a group of the population who can t afford computers or monthly internet access? We know that lower income bracket citizens have the highest rates of chronic disease, so any ideas on how to overcome this barrier? Patrick: First of all, we are making this program more accessible. People have all sorts of ways of accessing the program at the library, potentially at public health centres and other healthcare based facilities, at senior citizen centres, or at a family member s home.

8 Q: Would it be possible to get a link to access the available programs in Canada? Patrick: No, not at the present time because the BC Ministry of Health funds the program for British Columbians (just as the Alberta Health Services would fund the program for Albertans) and not the whole of Canada. Health Council response: Our report on self-management support lists a variety of SMS programs and related policies in place across Canada. Refer to the Appendices section. Q: Do you have a tool where a health care provider can recommend the website or send the link to those they feel require self-management support? Patrick: In British Columbia, people can access this program through our website at Peter: In Alberta, we recommend accessing information about our current programs at This page will host information about online programming as soon as it becomes available (2013). Also send patients to https://myhealth.alberta.ca and search for Better Choices, Better Health. Kate: This tool would need to be embedded in your electronic medical record system.

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