The privacy and security of your personal information is extremely important to us. This page explains how and why we use your personal data, to make sure you stay informed and can be confident about giving us your information.
1. What is the Health Companion?
The Health Companion is an app that collects data about patient's cancer experience on a regular basis – much like a digital diary.
It can be accessed on a smartphone, desktop, laptop, tablet or iPad. The Health Companion enables individuals living with mesothelioma to provide information about their own experiences of receiving treatment and care by answering a few simple questions. They 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.
The information collected via the Health Companion is linked to the patient’s clinical data that is collected by the national registries. When analysed together, the Health Companion and the registries treatment 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.
2. What are cancer registries and why is this information needed?
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.
Information about all cancer patients is already routinely collected. Across the UK, this is the job of the cancer registries. In England this is the National Cancer Registration and Analysis Service (NCRAS), which is part of Public Health England. In Scotland it is the Scottish Cancer Registry, part of Public Health Scotland. In Northern Ireland it is the Northern Ireland Cancer Registry hosted by Queens’s University Belfast, and in Wales it is the Welsh Cancer Intelligence and Surveillance Unit (WCISU). These cancer registries collect information about every single cancer patient and use it safely and securely to help doctors and healthcare teams across the UK. 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.
If you would like to know more about the four devolved cancer registries, please visit:
In Northern Ireland: https://www.qub.ac.uk/research-centres/nicr/
3. Who can use the Health Companion & what are the benefits?
The Health Companion has been developed for patients with mesothelioma and lung cancer. It is the same Health Companion but with different experience and disease appropriate questionnaires.
The first and most immediate benefit is that by collecting the data in one place – much like a personal health diary - you can understand the impact the disease is having on your life. You are able to view your information to see what changes have occurred over a period of time. You can share this information with healthcare professionals, friends, family and carers so they can also see the impact and hopefully help you better. It enables you to be more in control.
The second and wider reason is that it supports existing national cancer data collection methods to help drive up standards and improve treatment. Information about all cancer patients is already routinely collected by the cancer registries (described above) however these do not include Patient Reported Outcomes, or patient experience data.
4. What data does the Health Companion collect
The Health Companion has various sections; some data is collected only once and other sections are to be repeated at intervals depending on patient preference. The full list of questions is available as part of our Privacy Notice.
Enrolment: On enrolment to the Health Companion, you will complete a very short paper form on your cancer at that time. The information collected includes your NHS number, details of your diagnosis, any genetic information, your current stage and a tick list of treatments to-date. You will use this to help you populate a clinical data questionnaire within the first week of using the Health Companion.
Setup: This includes contact details, care and health history, consent and some financial questions.
Patient Reported Outcomes: These regular reports include information about your experiences including symptoms and the impact the cancer is having on your quality of life. These reports take approximately 2 minutes each to complete and there are 4 of them in total. The symptom questionnaire is specific to your disease (lung cancer or mesothelioma)
Experience of Care: This section asks for your experience of the health services in managing your disease. This typically takes 10 minutes to complete, but only needs to be done at 6 monthly intervals.
Cost diary: Within the Health Companion you are able to record any costs incurred as a result of the illness, such as private care, equipment, insurance or other incidental costs, in one central place. This is optional - you only do this if you want to record your expenses. You can add details at any time and will see the data in useful reports that ensure you keep track of all expenditure.
A full list of all the data items we collect is provided in the Privacy Notice.
5. How often and for how long will I need to use the Health Companion?
You will be asked to complete Patient Reported Outcomes (PRO) questionnaires monthly – this should take about 10-20 mins a month. You will be reminded to do these on the same date each month. There is also the Experience of Care survey that you will be asked to complete twice a year, and cost diary that you can use at your convenience. We recommend people use the app for a minimum of 6 months-1 year to gain the best insight. You can stop using the app and remove your consent at any time.
6. Who has access to the data and how they will use it?
Management (of the Health Companion)
In order to manage the Health Companion, Mesothelioma UK / LCNUK / DaSH Global or third parties working on their behalf, will have access to the data. They will use this data to:
Enrol you in the Health Companion and upload your information to the system
Provide you with support to enable you to use the Health Companion
Contact you in relation to the set-up of the Health Companion
Respond to or fulfil any requests, complaints or queries you make to us
Meet our legal obligations
For more information, please see Privacy Notices
Research and Audit
The data that is collected will then be anonymised and this anonymous data will be made available to researchers. Anonymous data is data that has had any personal identifiers removed, such as name, date of birth and NHS number. Research teams from Universities, the NHS and Industry will be able to make applications to use the data in their research. Only anonymous data will ever be shared, and there will be robust contracts in place to ensure these organisations meet our high standards.
Your healthcare team cannot access the information contained in the app. If you give us consent, we may let your clinical nurse specialist know that you have registered and are using the app. However no other information will be shared. We encourage you to share your data and reports with doctors, clinical nurse specialists, carers and family to help them understand how you have been feeling.
7. How we keep your data safe.
Dash Global, Mesothelioma UK and Lung Cancer Nursing UK are jointly responsible for keeping your data safe. They take this responsibility very seriously. The security measures we take include:
Rigorous procedures in line with General Data Protection Requirements legislation to prevent unauthorised access to your information.
We have put in place appropriate technical, physical, and managerial procedures to safeguard and secure the information we collect about you. (For example: we use Microsoft Azure NHS Blueprints infrastructure based only in the UK. We are Cyber Essentials accredited.)
Information transmitted via the Health Companion is done using a secure military strength encryption (256 bit) both when the data is being transferred and when it is at rest.
Data is only readable to the recipient. We have strict security standards, and all our staff and third parties who process personal data on our behalf get regular training about how to keep information safe.
We, like all organisations using health data (Hospitals, GPs, Pharmacists) must publish and assure government and public of their security policies and procedures through NHS Digital’s Data Security and Protection Toolkit (DSPT).
From time to time, Dash Global, Mesothelioma UK and LCNUK may engage the services of third parties to process your data. We will only work with carefully vetted organisations who meet our high security standards and are registered with the Information Commission.
8. Who developed the Health Companion?
The Health Companion is a joint project between the charity Mesothelioma UK, Lung Cancer Nursing UK and DaSH Global.
Mesothelioma UK is the national charity for anyone affected by mesothelioma. They exist to support patients to live better and to live longer, and to prevent mesothelioma from happening to future generations. You can find out more about them https://www.mesothellioma.uk.com.
Lung Cancer Nurses UK (LCNUK) is the national charity that supports nurses working in the area of lung cancer. The charity is dedicated to the advancement of health by providing nurses who specialise in the treatment of patients with lung cancer or mesothelioma with support, education and the opportunity to communicate and network with peers; and to provide a national voice on clinical and strategic issues for specialist lung cancer nurses. You can find out more about them https://www.lcnuk.org
DaSH Global are a health economics firm who specialise in real world observational research. You can find out more about them https://www.dash-global.com
9. Who manages the Health Companion?
The Health Companion is managed day-to-day by dedicated Project Managers and Health Companion Managers who sit within the charity and by DaSH Global Ltd. The Health Companion has been developed by leading healthcare professionals who oversee the overall management, roll-out and progress of the Health Companion.
10. How has the Health Companion been funded?
The Health Companion has been funded through industry sponsorship.
11. Who can I contact with any questions, concerns or complaints?
We have dedicated Health Companion Managers who are able to answer any questions and deal with any concerns or complaints; tel: 0116 218 5718 or email: HCManager@mesothelioma.uk.com
12. Can I withdraw my consent?
Yes. You can withdraw your consent at any stage. This can be done directly in the App or you can contact the Health Companion Manager at 0116 218 5718 or email HCManager@mesothelioma.uk.com
Lung Cancer Nursing UK