Helping Patients Stay Connected and Informed

January 1, 2016

For 40 years, the Patient Alumni at the Ottawa Heart Institute has supported patients and helped them stay connected after being discharged. Approaching that landmark has inspired significant renewal and reinvigoration for the organization.

The Patient Alumni was formed to offer patients a way to stay informed about heart disease, treatment and prevention, and to stay involved with and support the work of the Heart Institute. Formally incorporated in 1986, raising funds for equipment, services and patient support was, until recently, a key activity for the Alumni. Over the years, the organization raised more than $5 million and re-invested it in patient care and support.

Passing that fundraising aspect to the Heart Institute Foundation has allowed the Alumni to focus more strongly on expanding member services and patient support.

The most fundamental change is that all patients now automatically become members for life when they are discharged. “This will broaden our membership base from a few thousand to tens of thousands of patients over a few years,” explained Jean Bilodeau, President of the Patient Alumni. “All patients will now become part of the extended Heart Institute family that provides support beyond the hospital experience.”

“We have also broadened the definition of an Alumni member. It’s no longer just the patient. It is family, relatives and caregivers,” said Bilodeau. This move recognizes the important role that the people surrounding our patients play in their recovery and wellness. Family and caregivers also need support and access to resources and information.

“The changes we are making are linked to the spirit of the Heart Institute’s new strategic plan, called ‘Stronger Together.’ The Alumni is part of the team just as patients and caregivers are part of the team,” he continued.

A significant new resource is the Alumni’s community forum. It is a moderated online community where people can seek support and share stories. Not intended to provide medical advice, the forum is a place to ask questions of others who have had similar experiences or live with the same conditions. Caregivers can learn from and support one another to better understand what to expect when a loved one is ill, recovering or even prior to a procedure.

“Talking to others who understand their situation will help them feel more confident and reduce their anxiety,” said Bilodeau. “Uptake has been very encouraging. We already have 25 active discussion threads, with over 100 members, that deal with various heart conditions and wellness topics.”

In addition, the Alumni now provides all patients with a medication bag to take home when discharged. The meds bag contains information about how to deal with medications and about available resources, as well as an Alumni membership card. Then for follow-up appointments, patients can use the bag to bring in all of their medications as they are required to do for such visits. This helps to ensure that medications are being taken as directed and that the health team is aware of any new drugs a patient may be taking for other conditions.

“Of course, we have the Alumni website that offers all kinds of information, recipes, tips and links to resources,” said Nancy Lawson, member of the Alumni Board responsible for communications. “We also have testimonials about experiences at the Heart Institute and with staff. So, it’s a very warm, welcoming place for discharged patients to go if they are feeling uncertain or uncomfortable.”

A variety of other new initiatives are in development. The Alumni is also playing a more active role in patient engagement at the Heart Institute by co-chairing committees for both clinical care and research.

“Once you’ve had heart disease or a procedure, it is something that you live with on an ongoing basis. You want to have an ongoing relationship with the broad Heart Institute family to help maintain your health and avoid readmissions and additional procedures,” concluded Bilodeau. “The Patient Alumni is there to help you do that.”