Consumer-Led Design and Implementation of the Care Connect Notebook

A “consumer” is a person, receiving or having received targeted health care, who provides a consumer perspective, contributes consumer experiences, and can advocate for the interests of current and potential health service users. Developing meaningful partnerships with Cancer Consumers has never been so important as evidence continues to underscore significant unmet supportive care needs despite routine clinical follow-up with healthcare professionals. This consumer-led project used the theoretical underpinnings of the care biographies of the Caring Life Course Theory to develop a comprehensive Care Connect Notebook (a care biography) created by consumers for consumers (across the lifespan of age) in partnership with the multidisciplinary cancer team to use as a support resource to consumers in preparing for medical, nursing, and allied health cancer appointments across the entire cancer care continuum. A codesign-thinking approach was used to provide a person-centered approach to the development and implementation of the Care Connect Notebook , which was conducted in two phases: (1) discover and define, and (2) develop and deliver. A series of workshops, consumer engagement with Cancer Safety and Quality Meetings, corridor conversations, and electronic surveys were used among consumers affected by cancer and multidisciplinary cancer healthcare professionals. Consumers also led the clinical staff training on how to use the Care Connect Notebook with people with cancer. Data were analyzed using descriptive statistics and content analysis. The consumer-led and initiated project, through conceptualization and ongoing advocacy, led to the development of the first Cancer Care Biography, the Care Connect Notebook . The results from the real-world evaluation, led by consumers for consumers, identified that this bespoke resource formed a living document that people with cancer used before, during, and after their appointments with their cancer healthcare professionals (nursing, allied health, medicine, including General Practitioners). Consumers reported that the Care Connect Notebook empowered them to develop more trusting relationships with their healthcare professional team, to identify what matters most to them to actively engage and receive care according to their own idiosyncratic (needs, preferences, goals, values, cultural and social cultural contexts), and captured their “shared-care plan” while having their care network contacts available to them, all in one place. The development of the Care Connect Notebook has provided valuable insights into the perspectives of consumer representatives in an Australian context and how they proactively partnered with their healthcare professionals in cancer services. By understanding their real-world personal experiences, a bespoke consumer cancer resource was developed to overcome the challenges they faced and facilitate authentic involvement in their care and treatment with cancer nurses and other healthcare professionals.