{"id":1403,"date":"2026-03-04T14:51:53","date_gmt":"2026-03-04T04:21:53","guid":{"rendered":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/?p=1403"},"modified":"2026-03-04T16:13:42","modified_gmt":"2026-03-04T05:43:42","slug":"taking-note-of-how-consumers-digest-cancer-information","status":"publish","type":"post","link":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/2026\/03\/04\/taking-note-of-how-consumers-digest-cancer-information\/","title":{"rendered":"Taking note of how consumers digest cancer information"},"content":{"rendered":"

Information overload is a distressing reality for many people trying to absorb the harsh reality of their cancer diagnosis. However,\u00a0understanding complex\u00a0information is vital to their\u00a0treatment and path to recovery, so\u00a0Flinders\u00a0University\u2019s\u00a0Caring Futures\u00a0Institute has played a crucial role in providing an effective tool to help patients process cancer information in an easier way.<\/span>\u00a0<\/span><\/p>\n

The Care Connect Notebook<\/a> has been jointly created by people with\u00a0lived\u00a0cancer experience and healthcare professionals,\u00a0to\u00a0enable those facing cancer diagnosis and treatment to\u00a0feel more confident that they are\u00a0better heard and understood.<\/span>\u00a0<\/span><\/p>\n

Professor Catherine Paterson<\/a>\u202fis\u202fProfessor of Cancer Nursing,\u202fa\u00a0joint-appointment\u00a0between Flinders University and the Central Adelaide Local Health Network\u00a0(CALHN). She\u00a0worked on the Care Connect Notebook,\u00a0a tool that was suggested and co-designed by\u00a0the CALHN\u00a0Cancer Consumer Group\u00a0and 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.<\/span>\u00a0<\/span>\u00a0<\/span><\/p>\n

\"\"<\/a>
Professor Catherine Paterson<\/figcaption><\/figure>\n

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\u00a0it\u00a0prompts\u00a0the\u00a0consideration of important aspects that go beyond medical care, such as psychosocial, financial, transport and accommodation support.<\/span>\u00a0<\/span><\/p>\n

Because the notebook keeps all information in one place, it can be taken from appointment to appointment, meaning that patients\u00a0don\u2019t\u00a0have to repeat information between specialists. It is also a helpful document for cancer patients to present when seeking second opinions.<\/span>\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cIt\u2019s effectiveness as a valuable consumer tool is due to it being shaped by those who have received cancer treatment,\u00a0plus the input of\u00a0clinicians,\u00a0services including youth cancer,\u00a0and\u00a0is\u00a0underpinned by research,\u201d says Professor Paterson.<\/span>\u00a0<\/span><\/p>\n

\u201cCancer Research is strongest when the people most affected by the disease help shape the questions, the methods and the outcomes.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

Consumer<\/span>\u2011<\/span>led cancer research is not simply consultation.\u00a0Professor Paterson calls it \u201ca shift in power\u201d because it\u00a0recognises that people with lived experience hold\u00a0expertise\u00a0that clinicians and researchers cannot access through training alone. Their insights illuminate blind spots, challenge\u00a0assumptions\u00a0and ensure that research reflects the realities of diagnosis, treatment,\u00a0survivorship\u00a0and end<\/span>\u2011<\/span>of<\/span>\u2011<\/span>life care.\u00a0<\/span>\u00a0<\/span>\u00a0<\/span><\/p>\n

This consumer led publication has optimised patient navigation through the\u00a0CareConnect\u00a0Notebook being developed by people affected by cancer for people affected by cancer.<\/span>\u00a0<\/span><\/p>\n

CALHN Consumer Representative\u00a0Tereena\u00a0Cocks, who brought the\u00a0notebook\u00a0idea to CALHN, says information is empowering\u00a0for people receiving treatment for cancer.<\/span>\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cWhen you\u2019re going through cancer treatment, there\u2019s so much you don\u2019t know, and a lot you don\u2019t even know to ask,\u201d\u00a0Tereena\u00a0says. \u201cCancer\u00a0consultations can be overwhelming with\u00a0new information, unfamiliar\u00a0words\u00a0and big decisions to be made all at once.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cThe notebook takes away some of the guesswork and anxiety because the information is right there in front of you.\u201d<\/span>\u00a0<\/span><\/p>\n

Professor Paterson says it\u00a0was a pleasure doing a series of\u00a0intensive\u00a0writing\u00a0sessions\u00a0with\u00a0Tereena\u00a0and other medical professionals to\u00a0develop the manuscript\u00a0for the\u00a0Care Connect Notebook.<\/span>\u00a0<\/span><\/p>\n

\u201cTo\u00a0provide\u00a0cancer consumers with the right support,\u00a0having our research\u00a0published\u00a0in top-quartile cancer journals is truly outstanding and should be\u00a0recommended\u00a0to\u00a0empower\u00a0patient navigation\u00a0in all parts of the world\u00a0through the Care Connect Notebook,\u201d\u00a0she says.<\/span>\u00a0<\/span><\/p>\n

The research findings \u2013 \u201cConsumer-Led Design and Implementation of the Care Connect Notebook\u2019, by Thomas Binns, Tereena Cocks, Morgan Atkinson and Catherine Paterson \u2013 have been published in the journal Seminars in Oncology Nursing<\/a>.\u202f<\/span><\/p>\n

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.<\/span>\u00a0<\/span><\/p>\n

Consumers can ask their care team about the notebook at any stage, particularly if they feel they would\u00a0benefit\u00a0from extra support preparing for appointments or keeping information in one place.<\/span>\u00a0<\/span>\u00a0<\/span><\/p>\n

Interest from the national Youth Cancer Service\u00a0has resulted in a new adaptation of the\u00a0Care Connect Notebook\u00a0being developed\u00a0for people aged 15\u00a0to\u00a025.<\/span>\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

Information overload is a distressing reality for many people trying to absorb the harsh reality of their cancer diagnosis. However,\u00a0understanding complex\u00a0information is vital to their\u00a0treatment and […]<\/p>\n","protected":false},"author":6575,"featured_media":1406,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[5155],"tags":[],"class_list":["post-1403","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-cancer-care"],"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/wp-json\/wp\/v2\/posts\/1403","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/wp-json\/wp\/v2\/users\/6575"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/wp-json\/wp\/v2\/comments?post=1403"}],"version-history":[{"count":0,"href":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/wp-json\/wp\/v2\/posts\/1403\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/wp-json\/wp\/v2\/media\/1406"}],"wp:attachment":[{"href":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/wp-json\/wp\/v2\/media?parent=1403"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/wp-json\/wp\/v2\/categories?post=1403"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.flinders.edu.au\/caring-futures-institute\/wp-json\/wp\/v2\/tags?post=1403"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}