Facilitating shared decision making through an online patient information portal

Background: Macquarie University Cancer Institute (MCI), located within Macquarie University’s medical precinct, supports multidisciplinary healthcare services for brain, lung, breast, gastrointestinal and urological cancers. In response to clinicians’ concerns that patients often find inaccurate internet information about their cancer, a cancer information website was created, providing filtered information for cancer patients and their families. Objectives: The purpose of this initiative was to create a patient information website to inform and empower cancer patients and their carers. Access to accurate online information would increase patient and carer decision-making capacity and facilitate a shared decision-making process with their clinicians. Method: Librarians created and maintained the website with support from IT staff, clinicians and education experts. Resources with appropriate content and health literacy levels were included as well as clinician-created information for patients with specific cancers. Health care staff guided their patients to use the website as an aid to decision-making. MCI staff embedded the site into the hospital website to heighten awareness and increase accessibility. A promotional brochure was developed for circulation in outpatient clinics, wards and day treatment centres and clinicians promoted the website at the hospital’s regular GP information evenings. Results: Initial feedback from staff and patients has been positive. Website usage statistics show a steady flow of users, especially for web pages with information on support programs, palliative care and practical tips on living with cancer. Useability testing, ongoing improvement and evaluation will continue with patients, carers and healthcare staff. Patients are encouraged to provide feedback through an online survey to shape the scope and content of the website. Negotiations are underway with hospital management to link the website to patient internet screens at each bedside in the oncology ward. Conclusion: The creation of a relevant, accessible cancer information website has provided an opportunity for patients and carers to participate in their health care decisions. The potential for increased accessibility to the website is being explored through its incorporation into information kiosks with printing facilities located in hospital waiting rooms, outpatient clinics and selected wards. The website may also be promoted through the provision of iPads for inpatients and outpatients. Additional resources, such as patient decision aids, individual discharge plans and health information other than cancer could be incorporated into iPad use, thereby empowering patients to participate in their health care decisions. Digital resources such as this website can be adapted to meet the information needs of all patients and their carers, not just those with cancer.