I was extremely excited to hear about this new initiative – National Cancer Information Pathways. The premise is that there will be an online system that is accessible on the internet and contains information, documents and reference sheets for the entire pathway relating to each cancer. It’s no small job but I know first hand that if I could have accessed a reliable resource that provided me with bitesize pieces of information at different times during my journey, life would have been so much easier. Imagine being able to download information and email it to friends or family that enquire ‘what now’.
The idea is that your Cancer Nurse Specialist spends 10 minutes with each person to find out what what they need to know, set up an account an print out the relevant information that they need at that time. The patient can then go in to their account and look at other additional information when they wish and then to discuss these with the CNS.
How brilliant will this be? So when I was asked if I would consider becoming a Patient Reviewer for this system and National Cancer Action Team (NCAT) (who are coordinating the system), I jumped at the chance.
Today the ‘Patient Reviewers’ met up for an event to understand the nuts and bolts of the system. How it will work. What needs to be done. Understand that each and every document needs to be reviewed by patients to ensure that it is in a format that is easy to understand. Lay people’s language (with medical terms added). Not to much information and not too little. We discussed the quantity of documents that would be needed and attempted to break down a pathway and think of other aspects that we, as patients, may think necessary whereas clinicians may not have thought about it.
Our jobs as Patient Reviewers is to be on standby (using an online system) to review everything. We will receive an email notification when information needs reviewing to login. Once there, we will comment/change each document (via the system) and upload these for the central administrator to decipher. If the changes are big changes they then need to go back to the author to rewrite/edit. For each document there will be quorum of so many reviewers required so that we can ensure that it has different perspectives review it.
Exciting times and I’m so prepared to get down to work on this.