We can start by telling you what the patient perspective is not – it is not the doctor’s perspective, it is not the surgeon’s perspective (as much as we love our many brilliant surgeons), it is not the clinician’s perspective – these perspectives may, and very often do, differ from the patient perspective. One of the problems in collecting patient data, is that it hasn’t been able to be collected across the life cycle of the patient experience. Some useful data is able to be collected in hospital but the problem then becomes, how does one collect this information once the patient leaves the hospital system. This is where the existing model breaks down. The sad reality is that currently in Australia, there is no method of collecting reliable and accurate patient data spanning the life cycle of the particular illness, moreover any information that is collected is ostensibly controlled by the clinician and therefore often skewed towards the clinician’s perspective. This data collection, coming under the umbrella of what has been called Patient Reported Outcomes, is now an accepted way throughout the health care system of determining the success of treatments and providing ongoing support to the patient.

Patient Perspective has been designed as a solution to the dilemma of how to go about collecting this data, by giving the patient a genuine voice and having that voice heard across the full life cycle of their journey, encompassing not only their experience during treatment in or out of hospital but what their quality of life is like, what their rehabilitation entails and how effective it is, what their support networks are like, the extent of the financial impact, what their work situation is like, all of their journey. Additionally, the journey to diagnosis is very rarely documented, with Patient Perspective it is.

Patient Perspective has been developed by patients, with input from brain tumour patient and carer user groups, through a cycle of user acceptance testing with patients. Patient Perspective can also be applicable to a much wider audience that just the brain tumour community. We see also Patient Perspective being applicable to all cancer groups, to mental health, into every are of health care care, giving patients the voice they deserve. Health care innovation is up for grabs.

If you are a brain tumour patient or carer you are invited to participate in the survey – an automatically generated report of your responses will be emailed to you immediately upon completion. It will provide you with a valuable record of your journey.