What is the ‘Patient Perspective’
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, or in this case, Patient Reported Outcomes information, as the term has been coined, 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, if indeed it was ever working in the first place. 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.
Any reporting that is done is also often skewed towards the clinician’s perspective. Patient Perspective has been designed as a solution to both those problems, the first being that the patient is given a genuine voice and the second being that their voice is 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, in other words, there is no empty rhetoric about talking to patients, here is the peer reviewed patient view in technicolour. We see Patient Perspective being applicable to a much wider audience that just the brain tumour community – a much, much wider audience. We see also, Patient Perspective being applicable to all cancer groups, for the mental health community, into every health care sector, giving patients the voice they deserve. Health care innovation is up for grabs. Patient Perspective has joined the conversation.
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.