This information page helps explain
1. What is the Health Companion?
The Health Companion is a secure, digital information gathering APP which can be accessed via a desktop computer, laptop, tablet, iPad or mobile phone.
2. About established Cancer Data Collection and how the Health Companion will compliment this
Information about all cancer patients is already routinely collected. In England this is the job of the National Cancer Registration and Analysis Service (NCRAS), which is part of Public Health England. NCRAS collect information about every single cancer patient and use it safely and securely to help doctors and healthcare teams across England. Only by looking at the bigger picture – by collecting data from as many people as possible – can the Cancer Registry teams help doctors decide on the most effective treatment for you.
Scotland, Northern Ireland and Wales have cancer registration services similar to England.
Sadly, the UK still lags behind many other developed countries when it comes to survival rates for cancer. Only by collecting performance data nationally can we drive up standards and improve treatment.
There are many outputs from the data that is collected including NHS England’s Cancer data and Atlas of variation as well as clinical audits in lung, breast and prostate, national statistics from ONS, and Cancer Alliance and provider performance measures.
The information held is highly sensitive and very personal. For this reason security and patient confidentiality are at the heart of everything that is done. The NHS have special legal permission to collect patient information without needing a patient’s consent.
If you would like to know more about the NCRAS please visit:-
The Health Companion enables individuals living with lung cancer to provide information about their own experiences of receiving treatment and care. Patients are able to enter details about the symptoms they are experiencing, the effects of treatment and about the wider impact the illness is having on their life. This information is then linked to the patient’s clinical data that is collected by NCRAS. When analysed together the Health Companion and NCRAS data provide a comprehensive insight that includes patients’ real experiences, and this can be used to review, evaluate and shape the future of cancer treatment and care services.
3. Who the Health Companion is intended for?
Currently there are two versions of the Health Companion, one for lung cancer and a second one for mesothelioma, which is supported by Mesothelioma UK.
4. Who has developed the Health Companion?
The Health Companions have been developed by a real-world research company called DaSH-Global. DaSH worked with the nursing teams at Mesothelioma UK and committee members of Lung Cancer Nursing UK to prepare the current versions.
5. Who manages the Health Companion?
Both Health Companions are managed day-to-day by a Project Coordinator and a Manager. A Clinical Expert Panel meets regularly to review the progress of the Health Companions.
6. What information will the Health Companions collect?
The Health Companions have various sections; some data is collected only once and other sections are to be repeated at intervals depending on patient or clinical need and preference.
Section 1: Setup data including contact details, medical history, clinical history etc. Only has to be completed once and takes about 10 minutes.
Section 2: The regular and key data is called Patient Reported Outcomes. It includes information about your experience including symptoms and the impact cancer is having on your life. This is collected in four, short regular monthly reports you will do at the same time:
- Overall Change
- Cancer related Quality of Life (FACT-G7)
- Lung Cancer Symptom Assessment Questionnaire
- General Health Status (EQ5D)
Section 3: Experience of Care or your experience of using the health services provided to you in managing your lung cancer (or mesothelioma). This typically takes 10 minutes to complete, but you only need to do it 3 or 6 monthly.
Section 4: The financial burden of caring for yourself. By this we mean additional equipment, insurance or private care or support, including any other incidental costs connected with having to cope at home. This is optional. You only use this if you want to record a diary of your expenses and share it. We want this to better understand our patient’s financial burden.
7. How often will users need to log on to their Health Companion and enter information?
To start, users will be asked to provide set up information (this is required only once) and complete there first set of questionnaires. After this, it will be at regular monthly intervals. The Health Companion will remind you. There is also a patient experience questionnaire that you will be asked to complete twice a year (or 3 monthly if you prefer).
8. About the safe storage of Health Companion data and how the data will be used.
Please be assured, we will carefully protect your privacy at all times. We use the best security and levels of encryption available. We will use the data for audit and research working with Universities, the NHS and Industry to help improve new and existing medicines, and the services you receive.
9. How is the Health Companion funded?
The Health Companions are funded through industry sponsorship and research.
If you have any specific questions, you can contact the Health Companion Manager directly:
Call: 0116 218 5718
Please find here the Privacy Notice for LCNUK
Please find here the Privacy Notice for Mesothelioma UK