Co-designing Services With Patients and Families: A Powerful Approach to Rethink Cancer Care

The concept of co-design is revolutionizing the way we approach person-centred care. This is particularly true in oncology, where patients’ and families’ experiences can be complex and emotionally charged.

The 2023 conference of the Canadian Association of Psychosocial Oncology (CAPO) focuses on such co-design to enhance health-related outcomes for everyone. It takes place June 20–22 in Montreal.

But what is co-design?

Components of co-design in cancer care

Co-design in cancer care is a collaborative process. It involves patients, significant others, and professionals in processes of co-creation. Together, they rethink services to be better aligned with users’ needs and preferences. This results in better health care.

This approach ensures that patients’/families’ voices are heard as in the saying “nothing about us without us.” Ultimately, this can lead to more effective, cost-contained, and personalized care.

Carmen Loiselle, Ph.D., and nurse, is the president of CAPO. She explains that psychosocial oncology is about understanding and supporting all people affected by cancer.

“Psychosocial oncology involves psychological, physical, occupational, spiritual, and social support,” she says. “It addresses unmet needs and ensures that patients and their families are not alone in their cancer trajectory. That means assisting them during diagnosis and treatment. But it also means assisting them when dealing with side effects (short and long-term) or complications of the illness.”

Photo of Carmen Loiselle

Co-design (meaning approaches that start with the patient rather than from the health care system) plays a crucial role in this process. It integrates patients’ and families’ direct input into their cancer care. This method makes them active participants rather than passive recipients. Indeed, individuals with cancer want more say in their diagnostic processes, treatment, and survivorship care plans.

Over the years, we’ve realized that healthcare professionals often assume they know what patients need. However, asking patients what they expect from the healthcare system has been shown to be much more in line with best practices.

We foresee that co-designing future cancer care will change much in the healthcare system’s structures, processes, and outcomes. Especially if we prioritize everyone’s input right from the start.

Co-design in action

An example of co-design in action is that of peer mentors.

Peer mentors are individuals who have experienced cancer themselves. They can provide support and guidance to those recently diagnosed. Their perspective on patients’ experiences is invaluable in the accompanying process.

If this concept seems familiar to many, it’s because it embodies what Hope & Cope has been doing for over 40 years. Many of our volunteers have been through their own cancer experience, and they are at the heart of the support offered.

Co-design is the future of cancer care

The goal of co-design is to make patient care better for everyone involved.

Like so many, Carmen has witnessed firsthand the significant impact of the pandemic on the healthcare system. Virtual care, which was difficult to implement pre-COVID, suddenly became mainstream.

“Patients seem to like it. Healthcare providers like it, and there are often shorter wait times for appointments,” she notes. “The big question has been, do we go back to in-person? If we ask people what they prefer, they will tell us. Depending on their situation, they may prefer a follow-up phone call, a virtual exchange, or an in-person appointment.”

As we move away from the pandemic, Carmen believes it is essential to ask patients about their preferences instead of making assumptions.

“Designing cancer care of the future,” she concludes, “will go through those co-design approaches and the co-creation of services that truly meet the needs and expectations of service users.”

The CAPO 2023 conference on co-design is June 20–22, 2023, in Montreal. Visit the conference website to learn more about the speakers, the co-design workshops, and registration.

To know more about co-design and value-based healthcare, see Carmen’s Canadian Oncology Nursing Journal editorial.

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