Endorsed By NICE

 A patient-held record for bladder cancer, used by both the patient and the clinical team responsible for their care, incorporating clinical information and a treatment summary. The record supports recommendations and standards around needs assessment, diagnosis, classification, discussion of options and follow-up. 

The statement for E126 – Bladder Cancer patient held record is now live on the NICE website on the endorsement homepage and on the tools and resource tab under the following guidelines:

NG2: Bladder Cancer: diagnosis and Treatment (February 2015)
QS106: Bladder Cancer Quality Standard (December 2015)

Bladder Cancer PHR Introduction

Background on PHRs

According to the NHS modernization agency, a patient-held record “can take a number of forms, from a dynamic tool used by the patient and all healthcare professionals providing care to the patient, to a print out from the patient’s medical record or general information sheets. It is designed to inform and involve patients in their care and to facilitate communication between the different groups of people caring for the patient.” (1) 

Patient Held records have been successfully implemented in obstetrics and diabetes care for many years and positively evaluated in numerous studies, RCTs and meta-analysis (2,3). More recently cancer patients, with the support of NHS England, also feel that if they had access to their clinical record they would become more involved in their own care (4).

This PHR intends to be an important part of how patients and the healthcare team looking after them will record discussions about their care, to ensure that they are informed about everything they need to know in a timely manner. We also hope the information provided, which will be updated as treatment progresses, will make patients feel more in control of their bladder cancer and follow up care.

... (continue introduction here)

Please click on the links below to download each document.

  1. Core Document

  2. Supplementary documents

    1. Non Muscle invasive Bladder Cancer
    2. Muscle Invasive Bladder Cancer
    3. Extra pages
    4. Symptom questionnaires