FREQUENTLY ASKED QUESTIONS

My IBD Care is a clinician led solution designed to meet clinician, patient and trust needs.

DATA

What kind of data does the platform capture?

The Chronic Condition platform is designed with NHS clinicians and follows NHS standards, IG compliance and privacy regulations. At present, the Chronic Condition platform captures patient self-reported data in real-time as these data are inputted in the app. This consists of data captured through surveys, outcome measurement forms, wellness scores, etc. As far as patient-specific data, the platform will store the patient’s name, last four digits of their hospital number, condition information, their profile including email and mobile telephone number, gender and D.O.B.

Is data secured?

Data is encrypted using 256bit SSL and hosted in a UK-based VPS.

Where is the data stored?

Data is hosted on a secure VPS at Krystal Hosting, a leading UK-only host.  The data that patients self-report and use to support disease management is stored natively on their mobile device.The data will be securely stored on patients’ phones the servers.

Is there a need for data integration?

There is no data integration required between the Chronic Care Management platform and the NHS system. The data captured through the SaaS (Software as a Service) is cloud-based and is stand-alone.

Can the data integrate with existing NHS databases?

We can integrate with a number of existing databases, however this custom integration must be scoped on a project by project basis, and there is an associated integration fee.

Is the data shareable and interoperable?

Currently, there is no element of import / export capabilities with systems however data interoperability can be explored and implemented.

Once we signed the contract for a license, how is access provided?

The product is a cloud-based SaaS platform which means usage and access happens on the internet through a web browser. Admin access is given to the backend system with a unique ID and a password. Ever user will have his or her own unique ID for access.

PRICING

What is the cost of the license?

70% of all the NHS budget is spent on chronic care management. Ampersand’s offering is a cost-effective digital service that is expected to reduce the cost of chronic care management, by facilitating early intervention and reducing bed days.

Licenses cost £2,500 per month per seat, with unlimited patient-usage, a free trial period and discounts for yearly or full-term payments.

We signed up for a free trial. What happens after the period is over?

After the free trial is over, your use of the service will be uninterrupted and you will move onto our annual license plan. If you would like to terminate your contract at the end of the free trial period, please inform us at least 28 days in advance.

If we opt-out of the service, what will happen to the data accumulated to date?

Data will be retained so that patients can continue to access their records for a period after the license expires.

TECHNOLOGY

What is SaaS?

“Software as a service (SaaS) is a software distribution model in which a third-party provider hosts applications and makes them available to customers over the Internet.” Because SAAS platforms operate in the cloud, updates are quick and seamless and all users benefit from ongoing R&D.

What is the product?

The product is an IG compliant chronic condition management platform and consists of a combination of mobile apps for patients and a cloud-based portal for clinicians where anonymised patient data is stored. The apps can be downloaded from the app store and play stores for free. Clinicians can send Electronic Patient Records (EPRs) to other clinicians in a couple of clicks.

Does the product involve using new technology which might be perceived as being privacy intruding, for example biometrics or facial recognition?

Ampersand has carefully selected and rigorously verified the technologies we have used for this product. All the data channeled through our products is stored in the industry leading secure manner.

SECURITY, ACCESS and INSTALLATION

Is patient data security guaranteed?

Patients can fill in a HQA and submit it by email via the app. To retain confidentiality, the questions and answers are anonymised with only the doctor and patient being able to decode the information contained therein.

How do patients access the app securely?

Patients sign up to the app by inputting their information such as name, email address, D.O.B, etc and setting a 4-digit pin code upon registration. If the pin code is forgotten by the patient, an email can be generated and sent to the registered email containing a secure link to create a new password.

Is there an ability to audit access to the information?

Yes. All users will log in using a unique ID (email address) associated with their accounts. Each session will be associated with a unique ID.

The audit log is stored on the server and reports are generated at the request of the Super User.

How is the dashboard laid out?

Every patient will have his or her own page laid out in an easily digestible format in the backend dashboard which clinicians have access to.

PATIENT CONSENT for DATA GATHERING; DATA

Will patients be asked for consent for their information to be collected and/or shared?

Yes, as part of Terms and Conditions of use which will require patient approval at the beginning of app sign up. The Terms and Conditions will also cover a section about data, how it’s gathered, where it will be used and why it would be used.

During the course of their treatment, can patients have access to their data?

Patients can request their record via the Information Commissioners at the Trust (either directly or through their direct care team) or through the app, which generates a pdf report on demand.

How accurate is the data?

There is no margin for error in the sense that patients report their symptoms via a questionnaire-format in the app at their own convenience. Clinicians can have access to that data in near real-time. The data would be the same data gathered through email surveys or surveys completed in person at the Trust.

PATIENT EXPERIENCE

Is the patient required to undertake additional actions to how they currently interact with their condition / condition staff?

No. Patients already email hospital teams and already submit questionnaires. These are entered manually into the hospital care record and will continue to do so. The App uses the patient’s own email address to send messages, so no new links or new methods will be required.

Is any formal training needed for patients and Trust users?

The platform is straightforward and easy to use. It does not have a learning curve and does not require any formal training. There will however be supporting material such as video and text tutorials readily available on request.

GENERAL

What is the app?

The IBD app is a management tool for patients suffering from a form of irritable bowel syndrome. It helps people suffering from the condition manage their condition in one unified setting. This includes medical history, current medication and reminders, your hospital information and your clinicians treating you. The focal point of the app is the questionnaires which are used to capture your health status and experience of treatment. Once you have filled in a questionnaire you can then send that information securely to your clinician via email who can then view the data and make evidence-based decisions on your condition.

What is the benefit of using the app?

By using IBD care you are providing invaluable data to your clinician about the status of your condition. This empowers you with the overall quality of the treatment you can receive over the foreseen future. The more frequently you fill in data the more knowledge the clinician has about your health status. This means you don’t have to attend needless appointments for health checkups, unless the clinician has seen your health is deteriorating he can contact you to schedule an appointment prior to experiencing any flare ups. In other words, you take control over your condition instead of it controlling you.

I like having face to face appointments, surely the questionnaires aren’t as accurate at capturing my health status than the conversation I have with my clinician?

The in app questionnaires are designed around signposting key information about your condition. If not, the questionnaires capture more data about your health status than you would in a check up. The idea of the app is not to completely cut out face to face appointments, it’s to only have appointments when it’s needed so that both parties (patients and clinicians) can be more efficient with their time.

What types of irritable bowel syndrome does the IBD app cover?

All types. These include Crohn’s disease, Ulcerative Colitis, Pouchitis and IBDU.

Does the app consume a lot of battery / data?

No. The app does not use background data and doesn’t need to stay open constantly. The app features are all offline, until you want to send your medical summary then you will need an internet connection (WI-FI and 3G/ 4G), and that is all.

Is my information safe within the app? And what information does the clinicians receive when I send my medical summary via email?

Yes. As soon as you leave the app it locks and you have to key in your personal 4 digit code to access the app again. The app does not request your house address, however it does need a contact number (home or mobile), your email and your first and last name. When you send a medical summary to your clinician they will only receive

• Patient name

• Patient hospital

• Patient email

• Patient phone

• The last 4 digits of your hospital number

• Your condition

• Your symptoms

If you are unhappy with certain information being displayed you can contact your clinician to talk about this in more detail.

If I decided to stop using the app, is there an opt-out mechanism? Is there a way to permanently delete all of my information?

Yes, you can request that we delete all your records.

If I delete my information, will it be permanently deleted from the Trust’s records as well?

No.

What will happen to my data if I lose my phone?

You will have to re-enter the data that was stored in-app, but data relating to your team will re-sync the next time you log in.

What happens if I forget my 4 digit pin?

We will send you a pin reminder by email.

Is the app on iOS or Android?

Both. If you have an iOS device go to the app store, and for android devices the Google play store.

Is the app free to download?

Yes, it is indeed.

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