Alberta Cancer Foundation

Patients and families become engaged in cancer research

engaged_article Most industries cater to the customer, relying on feedback and suggestions to stay on top of trends, preferences and improve services offered. But that often isn’t the case in health care, where research can happen away from the patient experience. In a bid to change this, Alberta’s cancer care providers are making a concerted effort to meet the needs and wants of the people they serve – the 43 Albertans who hear: “You have cancer” every day – by asking patients how their care can be improved.

“In any other industry you would always go to the customer to find out what they are looking for, but in health care we have always made the assumption that we know best,” says Theresa Radwell, the Alberta Cancer Foundation’s vice-president of program investment. “As we move forward, we want to partner with patients more within the foundation’s investment process.”

“The patient is the one element that is constant from beginning to end through the cancer journey. Why would you not include them?” says Theresa Radwell.

In 2013, the Foundation invested more than $7 million into four Transformative Programs (one by Dr. Alain Tremblay described further in this issue of Leap). “That was really our first foray into this area,” Radwell says. “We learned a lot from the process and will be building on how to better partner with patients going forward.”

The Foundation is planning to engage patients in the development and program investment decisions for care enhancement initiatives, such as the ones Linda Watson leads. Watson, the leader for Interdisciplinary Practice for CancerControl Alberta and Alberta Health Services, oversees several operational programs, including the provincial Cancer Patient Navigation Program in community oncology, and the provincial Integrated Cancer Survivorship Program. Patient engagement is a core feature in both.

“The two programs really focus on a system of care delivery that can meet a range of patient and family needs at different points across their cancer journey,” Watson says. “Who is better situated to tell us what needs exist and if the programs are meeting those needs than patients and families who are living the experience.”

The Navigation program has a primary goal of improving rural patient and family access to supportive care, information and services. Patients and families have played an important evaluator role regarding the impact of this relatively new program through focus groups and surveys. Their feedback has led to strategies to increase awareness of the program.

In contrast, the Survivorship program is in the early stages of development and planning. “Although it aims to support the well-being of patients across their entire journey as well,” Watson says, “it will have a particular focus on improving the transition experience for patients and families once treatment is finished and their care is transferred back to primary care.”

Funding from the Alberta Cancer Foundation enabled the Survivorship team to engage with patients and families from the beginning of program planning, bringing a different perspective to discussions. Including patient and family advisors in the program planning ensures that concerns and experiences of cancer survivors are at the heart of the program’s development.

“We developed role descriptions for our patient and family advisors,” Watson says, adding that structure was necessary to clarify the goals and expectations of everyone. It can be intimidating for patients to speak up in a conversation with stakeholders, community agencies and medical professionals also at the table. It is important for everyone to feel equal and heard for the idea of patient engagement to work.

With patients as partners, Radwell says the Alberta Cancer Foundation will be more intent on engaging patients and family suggestions about future priority setting, putting knowledge into practice and program development and investment. “The patient is the one element that is constant from beginning to end through the cancer journey,” she says. “Why would you not include them?”

The Foundation based its goal of more engaged patients on evidence of successful research around the world. For example, in the U.S., Patient-Centered Outcomes Research Institute invites patients and professionals to weigh in on research applications, attend workshops and sit on advisory panels with the mission of all voices helping make more-informed health-care decisions. Also, the Alzheimer’s Society supports families throughout the United Kingdom by gathering experiences of caregivers, health professionals and even those with dementia to better-inform their work as a leading support and research charity.

Today, Radwell says donors are more informed and question the Foundation about where funds are going. They also want regular updates about the impact of their donations. Therefore, it’s only natural to include them in the conversation to hear things first-hand. “It’s not to say that patients have all the answers but without including them in those components, you’re missing a key piece of understanding about what things need to be addressed,” Radwell says. “It’s a big shift and it’s something than you can’t make overnight.”

“There is no one right way to engage patients but the important thing is that patients and families are involved and become co-creators of system redesign,” Watson adds. “Patient engagement is changing how health system redesign is happening, and the Survivorship and Navigation programs are tangible examples.”