Cancer survivors and health-care leaders talk making patient-centred care the new normal

By Shelly Jamieson, CEO, Canadian Partnership Against Cancer

September 20, 2016

The 4th National Forum on Patient Experience opens today in Toronto and my colleagues and I at the Partnership are looking forward to learning from other health-care organizations who are on the same vital journey to improve patient experience. As stewards of Canada’s cancer strategy, we fund programs and initiatives to focus on the person rather than only the disease, throughout the cancer journey.

Forums like this show the growing consensus across Canadian health care that the needs of people (patients, families, caregivers) are central to driving change. And as the Globe’s Andre Picard says: these patient-centred shifts need to happen at the frontline and system levels to be meaningful.

Last February on World Cancer Day, we convened a panel of cancer survivors and health-care professionals to discuss what it does or could look like to truly put the patient at the centre of care. They pointed to changes needed on the ground and in the big picture. We produced an 8-part series (of very short video clips) from this talk and we are releasing them today.

Watch: A panel discussion on advancing patient engagement

I urge you to take two minutes and watch one of the short videos. Watch any one, they don’t need to be in order. We hope this adds to the dialogue during the forum, follow @PatientXForum #PatientExperience.

Panel voices

The four panelists include: cancer survivors/patient advisors Pat Hartley (Canadian Cancer Society) and Claudia Hernandez (Partnership); Health Quality Ontario CEO Joshua Tepper; Trillium Health Partner physician and documentary filmmaker Seema Marwaha. The panel was moderated by the Globe’s Carly Weeks.

For me, hearing Ms. Hernandez talk about the extra stress she had to deal with as a new cancer patient trying to coordinate her care really brought home the challenge of creating a connected system.

 

And as we know, it is not just at diagnosis and treatment time that we need continuity but also as Ms. Hartley says, when people are transitioning back to normal life and their family doctor. She volunteers with the BC Cancer Agency’s Peer Support Program and says: “Once you’ve had cancer, you’re never the same. Everybody forgets that you’ve had treatments, radiation, chemo, major surgery and just expects you to be the way you were before. But you aren’t, you’re different.”

 

Dr. Tepper tells a moving story about a cancer patient of his who lost her job, and moved in with relatives and struggled to find the fare to pay for transit to get to her medical appointments. Worse still, when her cancer returned, her oncologist did not inform him. As he says: “This is a real failure of our system to care for people at their most vulnerable.”

 

Or hear Dr. Marwaha talk about the innovative ways she’s tried to walk in the patient’s shoes. She (and her care team) had their eyes opened when she went so far as to follow her 75-year old patient as he tried to get to tightly scheduled appointments across a sprawling hospital site, with discharge instructions written in medical jargon. “We realized this is not [his] fault, this is our fault.”

 

Summing up

Panelists also pointed to solutions, passionately calling for changes in the way physicians and other care providers are trained, and in the way the patient voice is embedded across health-care policy, practice, and research.

 

 

My colleague Dr. Tepper sums up: “We’re communicating better. We’re listening better. Where we’re failing is on a system level. Patient engagement is not a fad, it should be a fundamental restructuring of our health-care system, just like integrating nurse practitioners, or working in teams – it’s the new normal.”

I couldn’t agree more, and as the Partnership rolls out a new strategic plan (2017–2022) we plan to keep pushing “normal” by expanding the breadth and depth of opportunities for patients and families to engage with us to truly create a seamless patient experience.

Thanks to all of our panelists for sharing their health-care experience so openly to help improve the experience for others.

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Watch the series

A Panel Discussion on Advancing Patient Engagement

Presented by the Canadian Partnership Against Cancer

Moderated by Carly Weeks, Health Reporter and Columnist, The Globe and Mail