We have made a list of Frequently Asked Questions (FAQ’s) we have been asked when we have talked to different people. If there is something else you would like to know or questions you would like to ask please get in touch.

We are evaluating Helm by asking people to use it and give us their feedback on how well it works. The evaluation started in January 2020 and some of the questions and answers below came from people who have used Helm.

How do I access Helm?

You can access Helm on a smartphone, tablet, laptop or desktop computer. You can sign in to Helm using Google Chrome, Firefox, Microsoft Edge, and Safari web browsers. If you are a new user you will need to follow a sign up process and set up your NHS login. The NHS login recommends using: Google Chrome, Firefox, and Safari web browsers.
If you have limited access to technology, all Leeds Libraries have internet terminals that you can use to access Helm.

We are working with people to understand if a downloadable Helm app would be useful. If you would like to have your say, please get in touch.

Why do I need to prove who I am before I can use Helm?

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.

I am part of the Helm pilot evaluation. How will my feedback be used?

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.

What are the benefits of taking part in this evaluation?

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.

What rights do I have in relation to my data and information?

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.

What is the legal framework that allows Helm to process my data?

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.”

Are there any rules for using Helm?

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.

How do I know who can see my information?

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

How do I know my information is secure?

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.

How much does Helm cost to use?

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.

What happens after the evaluation?

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.

How long will my information be stored on Helm?

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.

Can I share my information with family and friends?

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.

I would like my carer / family member to be able to access my Helm

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.

Do all health and care staff know about Helm?

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!

Who do I contact if I need technical support?

If you have any technical queries about using Helm, contact info@MyHelm.org

What if I do not want to take part in the evaluation anymore?

You can withdraw from participating in the project or in the evaluation at any time by contacting info@myhelm.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.