New App for Patients - 'My Story Now'
We have developed an app which will enable children and young people who are survivors of cancer, to access their own medical information and results. The app has been developed to empower patients to help look after their condition following treatment for cancer. Watch our short video.
Young People will be able to view their appointment letters, results, scans and treatment information. There will also be a facility for patients to message their nurse specialist and receive replies. As the information is available through an app, patients will be able to read their healthcare details from a mobile phone, tablet or laptop, at a time convenient to them.
Your privacy matters to us.
NHS Scotland is responsible for the data you can see or upload in MyStoryNow. NHS Scotland will use your data stored in MyStoryNow to provide you with an extended and enhanced healthcare experience, such as having online access to to key information relating to your health.
NHS Scotland may also use anonymous data for planning services and to comply with other legal obligations.
NHS Scotland relies on other companies to provide you with MyStoryNow, therefore we may pass some of your data to them so they can provide you with the service that is required. For example; MyStoryNow uses MyAccount to protect your data from being accessed from people that shouldn't have access to it. You will be asked to register with MyAccount in order to be able to authenticate with MyStoryNow prior to giving you access to data in MyStoryNow. This is to protect your data and your privacy. NHS Scotland will share some details with the company that provides MyAccount such as your name, address, date of birth and CHI number (this is your number as a registed patient of Scotland). This company (Improvement Services) may offer you information about other services that you can access via MyAccount. This has nothing to do with NHS Scotland and is entirely up to you if you wish to use those additional services or not (e.g. some services offered by local authorities via MyAccount).
If you want to know more about NHS Scotland we suggest you click on NHSInform.
In relation to MyStoryNow, the Managed Service Network for Children and Young People with Cancer (MSN) will represent NHS Scotland. Please contact us if you want to know more about the MSN, MyStoryNow or how your data is used and protected in the app. You can find the MSN contact details here.
The new data protection regulations require that we nominate a Data Protection Officer that you can approach if you have any concerns about your privacy but we suggest that you contact your key worker first. It will be easier and quicker for you. However, if you wish to contact a Data Protection Officer, the MSN has appointed the NHS Tayside Data Protection Officer as your contact.
Who provides your personal information to the MyStoryNow App?
Some of your information will be uploaded manually by your key worker. They will pull the data you want to be uploaded from your NHS Scotland records. Your key worker will not upload data into the the app that you do not want to be uploaded. If you change your mind, and you wish more data to be uploaded or removed, you must contact your key worker.
There are a couple of places in the app where you can add your own comments and pictures if you wish to. You must be aware that by doing this you are responsible for your data too. The NHS will ensure the app is secure but you must take responsibility for your own device. It is recommended that you do not leave the app running when the device is left unattended and that you never give your account details to anyone.
Transferring personal information abroad
The app stores data in the UK however you will be able to access your data from your device anywhere in the world, provided there is data network, WIFI or mobile data available.
Who will have access to your data
Only you will have access to all of your data stored in MyStoryNow. Your key worker will only have access to data that they upload and to your avatar image but they will only see your notes if you have shared them in the app. NHS Scotland staff are well trained in relation to your privacy and know how to protect and handle your data.
How long will your data be stored?
Your data will be in the app until either you delete it (e.g. your avatar image and your own notes) or you ask your key worker to delete it. They will ensure your data is deleted at the earliest opportunity but sometimes they will have to contact the subcontractors involved in managing the app to do that for them.
Below we explain your rights regarding your personal data.
Your privacy rights.
Here we explain how you can exert your rights;
Right to access your data held in MyStoryNow. You can access your data anytime, just log onto the app and browse your data.
Right to rectify errors in your data. You can rectify some of the data directly e.g. your image avatar and your notes. If you realise there are errors in the data uploaded by your key worker please contact them directly. They will be able to make some rectifications (e.g. if they uploaded the wrong document) or they may need you to request a formal rectification of health records. You can find more about how to request a change to your health records here NHSInform.
Right to erase your data, object and/or to restrict the processing of your data. As explained above, you can delete some of your data in MyStoryNow (your avatar picture and your notes) and you can ask your key worker to remove some or all of the medical data uploaded in your profile. Just contact them and ask to do so. They will do this for you as soon as possible. They may need to contact the subcontractor who manages the app to help them to get that done for you.
Remember the NHS has nothing to do with MyAccount therefore if you want to delete your data in MyAccount you must contact them directly. This service is independant of MyStoryNow. If you delete your profile in MyAccount contact them by following the instructions given to you when you registered.
Deleting data in MyStoryNow will not delete the original data in your NHS files, only the app. Your avatar image or your personal notes are not transferred to your NHS files therefore if you delete it from the app is removed permanently and you will not be able to recover it.
If you want to object to MyStoryNow you can stop using the app and request for your profile to be deleted. To do that please contact the MSN.
If you want to resrtict access to some of the data, use the app to select what data you want to be shared.
Right to withdraw consent. If you don't want your data being in MyStoryNow you can withdraw your consent at any time. You only have to contact your key worker to let them know.
Right to lodge a complaint. If you are unhappy with the way the MSN has handled your personal data please apporach your key worker in the first instance to discuss the issue with them. If you don't receive a satisfactory answer to your concerns you can file a complaint with NHS Tayside. For further details contact the NHS Tayside complaints department or their Data Protection Officer. You can find out more information on the NHS Inform website.
Right to data portability. You can share or export the information in MyStoryNow by using the default tools on your device.
Rights in relation to automated decision making and profiling. We would like to reassure you that MyStoryNow does not perform any automated decision making and profiling. The data in MyStoryNow is only for your own use and those you decide to share it with. The MSN may run some statistics relating to uses of service but that data will not identify you. This will only be general statictics such as how many people are registered, how many times the app has been used in a month etc.
Are you interested in trying out our new app My Story Now? We are looking for young people age 14 – 24 years who have had a diagnosis of cancer to test the app. If you are interested or would like to find out more please contact Bernadine Wilkie, National Clinical Nurse Specialist, NHS Lothian on 07790 383972