The aim of this project is to build and test a patient portal developed for men with prostate cancer to assist them in managing their disease. The portal will use PRO data to direct men and their support team to resources and aids to address deficits in outcomes they report. This project will • assess the feasibility of exporting PROs collected by PCOR-Vic to a patient-portal which will display their survey results immediately • identify what information men would like displayed in the portal to assist them in managing their disease • Identify the format in which information should be displayed in the patient portal • Identify the extent to which men want to compare their own PROs with pooled aggregate data of other men at a similar stage of their disease, age and having received the same treatment. • If the co-design team feel that presenting this information would be helpful, the predictor tool will be developed and tested in this portal. This study will be conducted in two stages. Stage 1: a co-design project will be undertaken with men diagnosed with prostate cancer to build the patient portal. Information to populate the patient portal will be collected in collaboration with the Movember Foundation research team. Men will be consulted at all stages on the look of the portal, its content and how whether patient only data should be presented or whether population norm data should also be displayed to enable men to compare their quality of life with population aggregate data from men who contribute to PCOR-Vic. Other contributors to the design of the patient portal will be researchers and clinicians treating men with prostate cancer. The aim of this stage is to customise the portal to issues men raise as problems when their PRO data are analysed. So, for example, men who report a big problem with their urinary function will be directed to resources which might assist them in managing this complication. It is envisaged that the co-deign project team will meet face to face at monthly time intervals to develop the content. Interviews may be conducted with members who do not feel comfortable or are unable to make the face to face meetings. Stage 2: A pilot study will be undertaken to test whether the Patient Portal is well accepted by men. Population norm data will be included in this pilot project if in Stage 1 of the project men feel that it is of interest and importance to them. This work will involve modelling data to enable graphs to display results to men based on their age, stage of disease at diagnosis and before active treatment, and type of treatment received. We will recruit at least 15 men and, where possible, a similar number of spouses of men living or people playing a supportive role in the management of men with prostate cancer to co-design the patient portal (Stage 1) and participate in the co-design team. Stage 2 will involve a wider cohort to test the patient portal. We will provide the tool to consecutive men who answer the quality of life question implemented as normal practice by PCOR-Vic. This pilot study will involve approximately 100 men. We will assess the extent to which the website is accessed and the self-help information sheets downloaded. We may also develop a survey or interview with men. The details of Stage 2 will be further defined after the tool has been developed and qualitative research conducted.
Patient reported outcomes; prostate cancer, qualitative research
School of Public Health and Preventive Medicine
553 St Kilda Rd, Melbourne (adjacent to The Alfred)