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How Everyone Can Be a More Empowered Patient

Health care worker helping elderly man use his walker
Health care worker helping elderly man use his walker

The first step to advocating for better access to medical information, treatments, and care is gaining a solid understanding of the health care system we’re a part of. Mediaplanet asked leading organizations that represent patients how Canadians can become proponents for improved patient access and what they can do to become more empowered patients.

Dr. Karen Lee, Parkinson Canada

Dr. Karen Lee

President & CEO, Parkinson Canada

Canada Needs a System of Care for Parkinson’s Disease

Parkinson’s disease is the fastest-growing neurological condition worldwide, and in Canada the rates of Parkinson’s are reported the be the highest in the world. Why? Parkinson Canada is pursuing the answer to this question and solutions to turn this tide. While Parkinson Canada tackles this unique challenge, we’re providing hope and help to the 100,000 Canadians who live with Parkinson’s. Every hour someone in Canada is diagnosed with Parkinson’s, and in just 10 years that number is projected to double.

Waiting for a diagnosis

Parkinson’s is a complex and individual disease with needs that change over time. Access to care is among the greatest challenges faced by people living with Parkinson’s — even before diagnosis. The average wait time for a diagnosis of Parkinson’s in Canada is nearly one year, and in some regions, it’s more than two.

Roberta Wilson-Garett had a three-year-long journey of waiting, misdiagnosis, and more waiting before finally receiving an accurate diagnosis of Parkinson’s disease. Times of waiting like Roberta’s cause increased fear, frustration, and anxiety as symptoms persist and change with no answers. Unfortunately, Roberta’s story is not unlike those of the many Canadians who wait excruciatingly long to receive not only a diagnosis of Parkinson’s but also a treatment plan.

Within weeks of her diagnosis, Roberta attended a workshop hosted by Parkinson Canada. It was there that she learned more about Parkinson’s and was empowered to advocate for her care needs. Today, Roberta is an active volunteer with Parkinson Canada, advocating for improved access to diagnosis and care for all Canadians affected by Parkinson’s.

Need for a multidisciplinary approach to care

Due to the complex nature of Parkinson’s, an integrated and multidisciplinary approach to treatment and management is essential for better health outcomes and quality of life. Although evidence points to the need for people with Parkinson’s to receive care within multidisciplinary models, less than half of Canadians diagnosed with Parkinson’s are cared for within a movement disorder clinic.

To move forward with solutions to these challenges in access to care, Parkinson Canada is engaging with experts across the country to find ways to improve health system navigation, close gaps in access, and ensure the growing number of people affected by Parkinson’s are getting the right care at the right time.

To learn more about Parkinson Canada’s advocacy efforts, programs and services, research program, and ways to get involved visit Parkinson Canada.

Andrea Seale, Canadian Cancer Society

Andrea Seale

CEO, Canadian Cancer Society

Our understanding of cancer is improving every day. We have more effective prevention strategies, earlier detection tests, better treatments, and more support for people living with and beyond cancer. But there’s so much more to do. We know that one in two Canadians are expected to be diagnosed with cancer in their lifetime, and the number of cancer cases is predicted to be 80 percent greater in 2030 than it was in 2005.

In Canada, there are thousands of talented researchers and caring medical professionals. There are health advocates, educators, and volunteers who provide essential support and fundraise for cancer care from coast to coast. And there are donors to organizations like the Canadian Cancer Society and others — people who enable the progress to happen. This collective is united by one common belief: we can take control of cancer and help Canadians live their lives to the fullest.

We know from experience that when we bring together the intellect, commitment, and bold ideas from this collective, we can make incredible strides. We have a responsibility to take a leadership role, uniting together so that the most impactful work is benefitting the most people as quickly and effectively as possible. By working together, we can save and improve more lives. Together, we are stronger than cancer.

Dr. Durhane Wong-Rieger, Canadian Organization for Rare Disorders

Dr. Durhane Wong-Rieger

President & CEO, Canadian Organization for Rare Disorders

When we surveyed patients living with rare diseases on how the COVID-19 pandemic was affecting their access to health care, we were unprepared for how profoundly they were impacted. We kept hearing, “I couldn’t get to,” or “I was afraid to,” or “I was told not to,” or “I didn’t have the support to.”

The pandemic revealed the rampant weaknesses in our health care delivery system, not the least of which was the requirement for patients to receive services from multiple disparate locations optimized not for recipients, but for providers.

Sixty percent of respondents reported foregoing transfusions, infusions, diagnostic tests, monitoring, and reassessment exams, as well as consultations to start, change, or stop medications. At least half could have received services at home or elsewhere, but there was no care coordinator to make those arrangements. Even worse, many patients weren’t aware of their own treatment plan, so when their own physician wasn’t accessible, they were at a loss.

The rare disease patients who did well were those who had access to an integrated care team who participated as partners in developing, monitoring, and managing their care plan. Although this level of engagement is important for any patient, it’s essential for those with rare diseases. However, the pandemic has shown that, for this to become possible, patient access must become a priority in the Canadian health care system.

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