Feature from CONDUIT Spring 2015
By Angela Pirisi
When Adrianna O’Regan, 31 (pictured above), underwent bariatric surgery five years ago, she suffered a rare complication immediately afterward. At the time, she didn’t know anyone else who had experienced the same procedure, and had nowhere to turn for moral support.
“I went home after surgery on a Friday and started throwing up as soon as I got home. I assumed maybe it was something normal that happens after surgery,” she recalls. She had no idea she was dealing with a life-threatening situation—until she had to undergo emergency surgery six days later.
It took her nearly four months before she found and connected with the Edmonton Bariatric (Peer) Support Group, an initiative run by volunteers who O’Regan credits with helping her know what to expect in the months following surgery. Now, O’Regan sits on the executive council for her local group, which reaches out to the community by hosting regular live meetings.
Stories such as O’Regan’s have motivated the Canadian Obesity Network (CON-RCO) to develop a national public engagement strategy that supports and empowers individuals affected by obesity. CON-RCO is laying the groundwork by creating a dialogue with researchers, clinicians, policymakers and other healthcare providers and patients. A day-long workshop held during the 4th Canadian Obesity Summit in Toronto was designed to engage experts from various disciplines, as well as patients, to discuss the current landscape in Canada in terms of access to credible obesity information and support systems. The ultimate goal for the network is to meet bariatric patients’ unmet needs on a national scale—it’s a huge task, given that seven million Canadians have obesity.
According to a recent CON-RCO survey over 95% agreed on the need for a national public engagement strategy. What currently exists is a patchwork of independent resource groups across the country, mostly concentrated in major urban centres. A few weight management programs do offer peer support groups, but these are usually driven by the clinics providing bariatric treatment programs.
“These groups are a great support for bariatric patients but may not address all patients’ needs and desires,” says Ximena Ramos Salas, the network’s executive director.
The key to developing a well thought out engagement strategy that serves the needs of patients is to avoid assumptions or a prescriptive approach based on healthcare providers’ or researchers’ perceptions of what patients need or want. “Researchers all too often use experts and clinicians as a proxy for patients, asking them ‘what do you think your patients need?”, explains Salas. “We want to ensure that this is a community-driven and patient-led process as opposed to a top-down, expert-led initiative, whereby CON-RCO’s role will be to act as facilitator.”
CON-RCO will also potentially launch an ambassador training program to help seed nationally networked peer-to-peer support. It would involve informing patients about the complexity of obesity, so that they can become community representatives who can support others living with obesity. Ambassadors would receive a one-day training session led by peers and could then go on to train others.
Tapping into the patient perspective about what support they need will foster a better understanding of the patient journey, Salas adds, and will help inform the process of designing and offering more attuned community-
As O’Regan points out, “A number of support groups do exist, but they’re small pockets that don’t interact at all.”
Since healthcare services offered in each province and territory vary, a national engagement strategy would enable a much-needed dialogue across communities and regions, fuelling a knowledge exchange that would enhance patient support regionally as well. Local groups could examine what is being done in other parts of the country as examples of what has worked or not, which would help to model their own solutions.
The United States is the only country that has implemented a national program that engages people living with obesity. The Obesity Action Coalition was launched 10 years ago and now boasts 50,000 patients and chapters in every state. Salas suggests that lessons gained from the American experience could also help to inform a Canadian patient-driven agenda.
Patients like O’Regan are eager to see a national plan unfold. “A national strategy would help people to know that they’re not alone and give them an opportunity to share standard practices of care,” she says.
Having CON-RCO as the anchor for a national program just makes sense, O’Regan says.
“As the only obesity organization in Canada that is solely focused on obesity prevention and management, and the largest network in the world with 11,000 members, CON-RCO has already connected different communities such as healthcare professionals, researchers, policymakers and industry to come together and address obesity,” explains Salas.
“It’s a natural fit to work together with, and mobilize, the patient community—they’re the missing link in the national conversation on obesity. CON-RCO’s goal is to improve the lives of people with obesity. To do this, we need to develop a participatory approach that reflects our common goals and objectives.”