Introduction: Healthcare systems worldwide are increasingly interested in strengthening the role of patients in their own care1. The NEMICS consumer reference group embarked on developing a resource that aimed to support people affected by cancer to be more informed and actively involved in their care, provided with more personally relevant information and better equipped to recall and share their medical information with healthcare professionals.
Method: Consumer consultations identified initial needs. These ideas were in alignment with those local clinicians also had for ensuring better patient engagement and improved coordination of care. An integral aspect of this consumer-driven initiative has been to support and involve the group in all phases of this project. Consumers were involved in planning the necessary project considerations, requirements and determining the intended outcomes of such a resource. Throughout the project, consumers led project working groups that included clinicians; were involved in content and design development and participated in all decisions regarding the pilot implementation and evaluation.
Results: In late 2014, My Cancer Care Record was produced. This patient-held information resource provides a place to organise and keep all medical and cancer-related information; includes tips on questions and information to ask of health professionals and a place to record and recall important details, useful during and following completion of treatment. A three month pilot was implemented in fourteen sites across metropolitan and regional Victoria. The pilot sought to confirm appropriateness of the content, design and overall useability. Patient feedback is currently being evaluated.
Conclusion: This consumer-driven approach provided an opportunity for the group to actively share their knowledge and personal experiences; advocate for, and develop a resource to improve the experience for others. The partnership between consumers and clinicians has enabled the development of a resource that is patient centred and relevant to both groups.