Information overload is a distressing reality for many people trying to absorb the harsh reality of their cancer diagnosis. However, understanding complex information is vital to their treatment and path to recovery, so Flinders University’s Caring Futures Institute has played a crucial role in providing an effective tool to help patients process cancer information in an easier way.
The Care Connect Notebook has been jointly created by people with lived cancer experience and healthcare professionals, to enable those facing cancer diagnosis and treatment to feel more confident that they are better heard and understood.
Professor Catherine Paterson is Professor of Cancer Nursing, a joint-appointment between Flinders University and the Central Adelaide Local Health Network (CALHN). She worked on the Care Connect Notebook, a tool that was suggested and co-designed by the CALHN Cancer Consumer Group and serves as a convenient, pocket-sized personal notebook for those navigating cancer care by helping them prepare for appointments, ask the right questions, and feel more confident and connected through their treatment.
The notebook is given to people early in their cancer care journey, and it includes question prompts to help guide appointments; space to write notes, medical terms and follow-up questions; contains information about trusted support services, to avoid misinformation or misguiding online sources; and it prompts the consideration of important aspects that go beyond medical care, such as psychosocial, financial, transport and accommodation support.
Because the notebook keeps all information in one place, it can be taken from appointment to appointment, meaning that patients don’t have to repeat information between specialists. It is also a helpful document for cancer patients to present when seeking second opinions.
“It’s effectiveness as a valuable consumer tool is due to it being shaped by those who have received cancer treatment, plus the input of clinicians, services including youth cancer, and is underpinned by research,” says Professor Paterson.
“Cancer Research is strongest when the people most affected by the disease help shape the questions, the methods and the outcomes.”
Consumer‑led cancer research is not simply consultation. Professor Paterson calls it “a shift in power” because it recognises that people with lived experience hold expertise that clinicians and researchers cannot access through training alone. Their insights illuminate blind spots, challenge assumptions and ensure that research reflects the realities of diagnosis, treatment, survivorship and end‑of‑life care.
This consumer led publication has optimised patient navigation through the CareConnect Notebook being developed by people affected by cancer for people affected by cancer.
CALHN Consumer Representative Tereena Cocks, who brought the notebook idea to CALHN, says information is empowering for people receiving treatment for cancer.
“When you’re going through cancer treatment, there’s so much you don’t know, and a lot you don’t even know to ask,” Tereena says. “Cancer consultations can be overwhelming with new information, unfamiliar words and big decisions to be made all at once.”
“The notebook takes away some of the guesswork and anxiety because the information is right there in front of you.”
Professor Paterson says it was a pleasure doing a series of intensive writing sessions with Tereena and other medical professionals to develop the manuscript for the Care Connect Notebook.
“To provide cancer consumers with the right support, having our research published in top-quartile cancer journals is truly outstanding and should be recommended to empower patient navigation in all parts of the world through the Care Connect Notebook,” she says.
The research findings – “Consumer-Led Design and Implementation of the Care Connect Notebook’, by Thomas Binns, Tereena Cocks, Morgan Atkinson and Catherine Paterson – have been published in the journal Seminars in Oncology Nursing.
The Care Connect Notebook is provided to people receiving cancer care through CALHN cancer services, usually early in their treatment journey. It is included as part of introductory information packs in areas such as the Chemotherapy Day Unit and Radiation Oncology.
Consumers can ask their care team about the notebook at any stage, particularly if they feel they would benefit from extra support preparing for appointments or keeping information in one place.
Interest from the national Youth Cancer Service has resulted in a new adaptation of the Care Connect Notebook being developed for people aged 15 to 25.