Throughout the development of Helm, we have met with people and groups to ask for their feedback. We began with asking about the concept of a person held record and then had other conversations about how this might work and what we needed to consider such as access, data sharing and security. We have based the FAQs below on the issues and topics raised during these conversations. If there is other information you would like to know or questions you would like to ask which are not answered here, please contact us.
Helm is a pioneering online platform which is being developed in Leeds to enable people to have access to a whole range of information about their health and wellbeing. It emerged from a series of discussions with the citizens of Leeds which aimed to understand what people felt they needed to help them be more in control of their health and wellbeing.
The Helm development project is led by Leeds City Council in partnership with the NHS organisations in Leeds and supports the integration of health and social care.
Organisations participating in the project are listed below :
● Leeds City Council (Data Controller)
● Leeds Teaching Hospital NHS Trust
● NHS Leeds Clinical Commissioning Group
● Leeds and York Partnership NHS Foundation Trust
● Leeds Community Healthcare NHS Trust
● NHS England
● NHS Digital
● UK Cloud
● NHS System of systems
To access your Helm record you need to verify your identity. You will only have to do this once, before you access Helm for the first time. This is to prevent fraud and ensure that you are who you say you are.
We are working with NHS Digital, which has developed the NHS login ID verification process. People who sign up to Helm will need to verify their ID using NHS login before they can access their Helm account.
You will be required to go through a number of steps as instructed and provide a photographic proof of your identity. On completion, you will receive email notification to confirm that your identity has been verified and you can access your Helm account. The process may take up to 2 hours.
For the initial launch of Helm, we will be evaluating feedback from a small group of users. For this, we need to use your name and contact details so that we can contact you to ask how you are using Helm. We will ensure this is information is confidential and secure.
The analysis of your data will be undertaken by the Helm engagement team. We will be looking for themes and trends within the data provided by participants. We will not have access to your medical records and will only know what you tell us about your health and wellbeing. We will be asking you about your experiences of using Helm and, through this process, we will need to know things about you in order to see if Helm has made a difference to you.
During the evaluation, we will be looking for people willing to share their stories for case studies. This may mean that we will take audio, photos and video or you can provide your own.
All information will be processed in accordance with the principles of the Data Protection Act 2018
and other relevant legislation.
At first, we are evaluating Helm with a small group of people but we will be looking to increase the number of people giving us feedback over the coming months. We hope to have up to 300 people involved by the end of 2019.
If you are interested in taking part in the evaluation, please email firstname.lastname@example.org
It is hoped that you will benefit from being able to access your health and care information and to
add comments of your own. We hope that this will help you to feel more in control of your health and wellbeing decisions and choices.
Additionally, information gathered as part of this evaluation will enable us to identify how Helm can be improved and what might need to be added to make it more usable and beneficial. Allowing your information to be used in this evaluation will not involve any additional costs to you.
You have the right to withdraw from participating in the pilot at any time. If you choose to do this, we will close your account and store the information you have contributed into your Helm account in accordance with Retention and Destruction Policies, after which the information will be securely destroyed. The information which was transferred by clinicians onto their respective systems will be stored as part of your medical records. Your views will help enormously but if, after giving your consent, you change your mind and decide to withdraw, you will need to contact email@example.com
Please note that withdrawal of consent is not retrospective which means we will
not be able to retrieve any information which has already been used in the evaluation. You will also be required to return any assets provided to you.
You have a number of rights under data protection legislation. These are described in the ICO guidance (https://ico.org.uk/for-organisations/guide-to-the-general-data-protection-regulation-gdpr/individual-rights/). Please note that you are responsible for the data that goes on your Helm record as it is you who determines the content and the processing, such as sharing. Leeds City Council however is the data controller for all data stored on your account and is responsible for all aspects of the data security and systems which hold that data.
Taking part in this evaluation will not alter the care you receive from health and care services. If you decide to withdraw or decline to be included, this will not affect the quality or nature of clinical care that you receive. We are hoping that, through using Helm, you will have access to information that could improve your care experience.
We ask that when entering your own notes into Helm, you maintain acceptable standards of use and restrain from entering any defamatory or offensive comments in respect of any individuals. Threats and slander may potentially be subject to legal action against you.
Your medical records will still be confidential. They will only be looked at by people who are directly involved in your wellbeing and care. Your information isn’t shared with anyone who doesn’t need it to provide treatment, care and support to you.
During the evaluation, the feedback you give in person or through the online web form will be viewed by the evaluation team. The evaluation team will NOT have access to your medical records.
The legal framework governing the use of personal confidential data in healthcare is governed by the NHS Act 2006, the Health and Social Care Act 2012, data protection legislation and the Human Rights Act 1998
By law, everyone working in, or on behalf of the NHS and adult social care must follow strict information governance rules designed to respect your privacy and keep all information about you safe.
Helm will be held on the UK Cloud which is a secure, encrypted system.
The audit trail within Helm keeps a record of everyone who has accessed a record, the time and date when they accessed it and the information they were viewing. The laws on data protection are clear and we take them very seriously. We regularly check to make sure that only people who need to see your patient record are viewing it.
Helm is free. At the moment it is an online tool, it is not an app. It does not (and will not) contain “in-app purchases” or subscription services. It will not include advertisements, nor will the information it contains be passed on to third parties for things like targeted advertising or insurance profiling.
If you are accessing Helm on 3G or 4G, it will use some of your data allowance but this is expected to be minimal.
The evaluation will take 3 - 4 months and we hope that you will want to give us your feedback for the whole of this period.
We would also like to take video, photos, and audio of your stories and experiences to develop case studies and examples of how Helm has made a difference to people’s health and wellbeing. We want to include these on a website which would exist outside of the timescale of the evaluation.
The whole project is to run over 3 years and it would be useful to be able to check with participants at various points during this time to see how people are using Helm.
If you tell us that you would like to remain in contact and informed, we will look at ways that this could happen, for example through a Facebook Group or via email.
We will make the results of the evaluation available on the project website.
All the information that you contribute to Helm will be stored in accordance with the Helm retention and destruction policy. Your account and associated data will be considered active until you either request removal from Helm, or the account is dormant for a period of 12 months. If an account is dormant for a period of 12 months, a notification will be sent to you via email after which time it will become locked if you don’t go back into Helm. After this time re-registration will be required. After 3 years if you still do not access your account the account and all subsequent data will be deleted. The evaluation data will be deleted one year after submission of the final evaluation of the service.
You can show the information on Helm to anyone you wish to but do remember that some of the information may be sensitive. You should trust the person you are sharing your information with. We would advise that you don’t share your log in details with anyone. Treat access to Helm in the same way as you would your bank details.
Allowing carers, family members or other designated people that you choose to access to your Helm is planned for a later phase of development. We know we have to do this if Helm is to be used for parents to manage the health and wellbeing of their children or for carers who are looking after a someone else. With your help, we can understand what might be required and how this could be managed. In the meantime, you can, of course, show your information with those people you trust and who you think need to know.
We want Helm to be owned and used by citizens of Leeds and so we are working with you first. Health and care staff already use a number of different systems and some of these will feed information into Helm.
We are working with health and care organisations in Leeds to tell them about Helm so you may find that people know more as the evaluation progresses.
We are hoping that your involvement with the evaluation, and conversations that you have with health and care staff, will help spread the word too!
At the moment, Helm access is supported using the Google Chrome web browser although future developments are likely to include an app - if feedback is that people would find this helpful.
You can access Helm on a smartphone, tablet, laptop or desktop PC. If you or your family members don’t have any of these, we plan to work with the Leeds Library Lending service to see if it possible to loan equipment to you. Don’t forget that there are internet terminals in all Leeds Libraries too.
If you have any technical queries about using Helm, contact info@MyHelm.org
Helm is a project developed in Leeds to enable citizens to have access to their own health and wellbeing information. By giving people more information about their own health and wellbeing and interactions with services, including the ability to contribute their own information, Helm will help people have greater control of their own decisions.
The legal framework governing the use of personal confidential data in healthcare is governed by the NHS Act 2006, the Health and Social Care Act 2012, data protection legislation and the Human Rights Act 1998.
People taking part in the evaluation of Helm will contribute information in the form of “top three things to know about me”. This will be shared with health and social care professionals who will use this to inform their own decision making as well as help Helm users make more informed health and wellbeing decisions.
All information will be processed in accordance with the principles of Data Protection Act 2018 and GDPR.
We collect and store your data in the first instance with explicit consent (GDPR article 9.2.a). Any onward sharing of your Helm data with healthcare professionals for the purpose of your care is shared using the legal basis for GDPR article 9.2.h "The provision of health or social care or treatment or the management of health or social care systems and services."
You can access your account through the login option on the Helm website. You can also bookmark the actual login page on your device.
To access your Helm account you will have to type in your email address and password that you used to create your NHS login. You will then receive a text containing a four digit code which you need to enter. This is a one time use only code and you will be sent a different code each time you log on to Helm. This is known as a two factor verification.
Access to your Helm record will be via NHS login each time you login into your Helm account. NHS Digital has developed NHS login and is the Data Controller for information you provide as part of your Identity check.
You have a number of rights under data protection legislation which are applicable in relation to your Helm account. The rights marked with * (below) may not be applicable if you choose to exercise them in respect of your medical records held by health and care professionals.
Right to be Informed - You will be able to view the T&C’s and Privacy notice as part of the enrolment process; the T&C’s and Privacy notice acceptance ‘acceptance tick box’ will be presented for every login session. You will be mandated to acknowledge and accept changes to the T&C’s and Privacy notices when there are updates.
Right to Access - You have the right to request access to your health and care records available to you through Helm. If you wish to access information held about you over and above that accessed through Helm you will need to submit a data subject access request to the relevant organisation that holds the information you require. If you wish to access data held in the Helm archive you will need to contact firstname.lastname@example.org.
Right to Rectification – This right applies when the information is inaccurate or incomplete. You have the right to request the controller to have the data completed and rectified. Where you input information inaccurately onto your Helm account and later decide to correct this information, please be aware that these changes may not necessarily be rectified in the individual organisations’ systems and you will be expected to inform them of these changes directly.
Right to Erasure* (‘right to be forgotten’) - You have the right to request from the controller the erasure of personal data concerning you if the continued processing of those data is not justified. You will need to submit the request in writing.
The right to restrict processing - You have the right to request the restriction or suppression of your personal data. You can make a request for restriction verbally or in writing.
The right to data portability* - The right to data portability gives you the right to receive personal data you have provided to a controller in a structured, commonly used and machine readable format.
Right to object to Processing - The GDPR gives you the right to object to the processing of your personal data in certain circumstances, where processing is causing you substantial damage or distress. You can make an objection verbally or in writing.
Rights in relation to automated decision making and profiling* - There will be no automated decision making or profiling under this programme.
All enquiries in connection with exercising your rights in respect of data held on Helm should be submitted to Leeds City Council on email@example.com.
You can withdraw from participating in the project or in the evaluation at any time by contacting firstname.lastname@example.org. Withdrawing from evaluation means that you will no longer be able to continue with the programme. Please note that if you decide not to participate in the programme we will not be able to retrieve any information which has already been used in the evaluation. Your views, including your reasons for withdrawal will help us to evaluate the pilot.