Alberta Cancer Foundation

Getting patients involved

Pet Project: Pattie Ghent has found training future guide dogs helpful in her cancer journey.

What is patient engagement? We’re starting a new column in Leap in which we will explore patient engagement and the many forms that it can take.

As a cancer patient who has benefited greatly from approaching her treatment and care in a proactive, interactive way, Pattie Ghent has become a strong advocate for patient engagement. She is one of the many patients who have been able to move beyond the initial shock of a clinical diagnosis and forge forward with a collaborative health-care plan that she helped create.

The days of a cancer diagnosis being delivered with cool efficiency, followed quickly with a prescriptive order of treatment, are coming to an end. But just what does patient engagement look like?

Engagement means more than following a treatment schedule and keeping appointments. Ghent says it boils down to “trusting your instincts and speaking your mind and not being told what to do as the only option.”

As a patient, engagement begins with opening up a dialogue between you, your treatment team and your support system. Patient engagement operates on the assumption that your opinion on your body is valid and worth listening to, an idea that has been validated for Ghent. Having a say over the course of treatment “does help patients feel in control of their life – it is their life. Their choices are their choices. And they make a big difference [in their own care],” Ghent says. But while the opportunities are there, it sometimes takes a bit of a push for patients to speak up. The first steps to becoming engaged in treatment are simple, and small, Ghent says.

She suggests patients come to their medical appointments with a list of questions, and even consider bringing another person for support, whether that’s a family member or someone else. As long as a patient wants them in the room, they’re allowed to be there. For the duration of the appointment, you are the only thing on the agenda. So take advantage of that time and get your questions, curiosities and fears off of your chest, Ghent stresses. “The more patients can be speaking to their needs, and the more that they can be interacting with their doctors and medical staff and explaining what they need, the better,” she says. “What their choices are may be very different from what a doctor is suggesting.”

You may have noticed that meetings with your doctor have included more opportunities for you to bring up questions. Health care in Alberta seems to be moving toward a treatment model that encourages and supports patient engagement. Research on the topic published by Patricia McCarley in 2009 revealed that patients who actively participated in the decisions behind their course of treatment adhered to the treatment regimen better than those who were simply informed about what would happen to them.

Engagement can also go beyond your relationship to the medical world. For Ghent, a huge part of taking ownership of her health meant challenging the post-treatment symptoms of “chemo fog” and fatigue by raising guide dogs and sharing her experiences with others in the cancer community by accessing the supports offered through Wellspring Calgary. (Ghent was previously featured in Leap magazine in September 2013 for her work training future guide dogs.)

Engagement comes in many forms, and patients need to find the right mix between balancing their own wishes and desires with the suggestions and treatment regimen provided by the health team and living life the way they want to.