Patient Perspective Survey

Patient Perspective was borne out of an idea that the patient is best placed to determine whether the outcome of treatment has been successful. The concept of Patient Reported Outcomes is not to downplay or diminish the role of doctors, nurses, oncologists or the broader medical community, rather it’s designed to enhance the medical community’s role by providing valuable information about what works and what can be improved. Patient Perspective has been developed by software developer and continuing brain tumour survivor Stephen Newman. He also, for 18 months, ran a Sydney brain tumour support group and for 12 months, edited and published a nationally distributed e-News for Brain Tumour Alliance Australia (BTAA).

It is important to state that the information you enter into Patient Perspective is not a substitute for your medical records. To access your medical records it's recommended that you consult your doctor. Most of the questions are structured from the patients point of view, however they can equally be answered by a carer or family member. Estimated completion time: 30-45 minutes (depending on how extensive your responses are). Most fields are optional. You may skip through fields that you do not wish to, or are unable to respond to, or that are not relevant to you. Mandatory fields are marked with a red asterisk (*). Fields marked with + sign at the end of them mean that you can add multiple entries. Fields labeled "Click to Select" are multi-select fields, meaning you can have more than one choice. Patient Perspective is a detailed survey, with a lot of information to process. Use the "Save and Continue Later" button to return to complete Patient Perspective at another time should you be unable to, or not wish to, complete it in a single sitting. The last section of the survey provides an opportunity for you to provide us with feedback and suggestions about how we can make Patient Perspective better. Once you have completed the survey a PDF summary report of the information you have provided will be sent to your email address. It will provide you with a valuable document of your journey. There will also be a link to summary information on all Patient Perspective entries, to give you a snapshot of what the brain tumour community has been saying. Patient Perspective also works well on a mobile phone if you want to complete it if you are away from your computer.

Patient Perspective will not distribute personal information provided by any individual. All information is stored securely and is not distributed or shared with any entity. Patient Perspective may use aggregated summary information to create summary reports to enable us to provide this aggregated data in summary form to the individual. None of this summary information identifies any individual in any form.

By using Patient Perspective you agree that you are providing freely, information about your brain tumour journey as part of the Patient Perspective survey project. You agree to not pass any proprietary information contained herein to any other third party without the express written consent of Patient Perspective. You also consent to the information, feedback and comments that you provide being used by Patient Perspective in order to provide non-personalised aggregated information in the support of the brain tumour community.

Patient Perspective will collate the quantitative data entered into it in order to build a profile of what works for the brain tumour community and what can be improved upon. We will provide this statistical information back to patients and carers, the medical community and to governments, providing information never before captured in the health care sector. Patient Perspective is also a place for you to tell your story and have a journal record of your own journey. Let's get started!