Informed consent form

Project Title: Instinctively app testing 2024

Principal investigators

Puja Soneji, Struan Stewart, Hayley Smeulders - Else London

1.0 Invitation paragraph

You are being invited to take part in proof of concept product testing. Before you decide it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully.

2.0 What is the purpose of this testing?

Instinctively is at a proof-of-concept stage. This second round of testing will help us to understand whether Instinctively is useful to people living with dementia (or a mild cognitive impairment) and their carers. The testing will also help us to identify which features work well and what requires improvement.

3.0 Why have I been invited?

You have been invited to participate as a result of filling out our interest form and we are pleased to say you passed our eligibility criteria to participate in this testing as a pair.

Our criteria was:

- Main Participant: You are a person living with early-stage dementia, young-onset

dementia or a mild cognitive impairment who is willing to participate for the duration

of the testing.

- Supporting Participant: You are a supporter or carer who is willing to actively

participate for the duration of the testing by monitoring the success of the app and

responding to the needs of the main participant. You live with the main participant or

if not have regular close contact with them.

- Both participants own and regularly use an Apple or Android smartphone

(specifically iOS 14 or above for Apple, and Android 13 or above).

4.0 What do I have to do?

The information below is explained using a PDF guide and a video that you have received as part of this onboarding email.

Main Participant: We will request you download Instinctively on your smartphone prior to the testing start date. By the first day of testing you will also need to set up at least one habit task and one suggestion task with the supporting participant on their app. We would like you to respond to and interact with the app at the appropriate times. We will ask for your feedback at the end of the testing period.

Supporting Participant: We will request you download Instinctively on your smartphone by the first day of testing, and set up at least one habit task and one suggestion task with the input of Participant A. Once testing begins, we would like you to interact with the app when necessary and use it to provide weekly feedback via an in-app form. We will also ask for your feedback at the end of the testing period.

5.0 What will happen to the results of the testing?

The insights we collect from testing Instinctively will be used to validate and further develop the product. Any information gathered as part of the testing process will be kept anonymous. We will ask if you’d like to be involved in recorded interviews post-testing that can be used to validate Instinctively. These interviews are not mandatory.

6.0 What personal information will be collected?

In order to create a version of the app for you and analyse the results of the testing, we will need to store the following personally identifiable data:

- Name,

- What you identify as

- Type of dementia or MCI and how long you’ve been living with it

- Email

- Phone number

- Profile picture

This information is collected as part of the Instinctively Testing Form you fill out. Your name, email, phone number and profile picture will not be publicly facing when interpreting results.

7.0 How will we use information about you?

Else London will be used as a data controller of this testing. This means that they are responsible for looking after your information and using it properly. Else London will keep your personal data i.e. your Name, What you identify as, Profile picture, phone number, email address for:

- 3 months after the testing has finished in relation to data subject consent forms

- 3 months after the testing has completed in relation to primary research data

Within this time, we may ask your permission to retain your personal data for future contact purposes.

For the purposes of this testing, we will be sharing your personal data with Hppn- our tech partner who is collaborating with Instinctively to develop the app. We only permit them to process your personal data for specified purposes and in accordance with our policies.

8.0 If you wish to stop testing

You can stop being part of the testing at any time, without giving a reason, but we will keep the information about you that we already have and remove any personal data on you such as your name, location and contact details.

If you wish to raise a complaint on how we have handled your personal data, please contact Warren Hutchinson at Else London via email warren@elselondon.com, via telephone 0203743 7020 and/or via post at Unit 506 Metropolitan wharf, 70 Wapping Wall, London E1W 3SS.

9.0 Incentive

As incentive for being involved in the testing of Instinctively we would like to provide each set of participants (person living with dementia/MCI, and their supporter) with a voucher. The voucher will be in the form of a £50 Amazon Gift Card that will be sent electronically to you after the testing finishes on the 20th May 2024.

To qualify for the voucher you will be required to:

- Fill out all of the weekly feedback forms within a reasonable time.

- Use the app on a regular basis (both main and supporting participant).

- Complete a final questionnaire and optional interview at the end of testing.

By agreeing to these terms both participants accept the following:

- I confirm that I have read and understood the participant information sheet dated

15/02/24 for the above study and have had the opportunity to ask questions which

have been answered fully.

- I understand that my participation is voluntary, and I am free to withdraw at any time,

without giving any reason and without my legal rights being affected.

- I understand that in order to receive the £50 Amazon Voucher incentive, I will need to abide by the terms mentioned in section 10.0.

- I confirm that I understand that this is a proof of concept test and therefore this product may not affect or improve my current situation.

- I give permission for project partners to access my research records that are relevant to this research.

- I give consent for information collected about me to be used to support other research in the future.

- I give consent to being contacted to take part in other research studies for Instinctively (you can opt out of this by sending us an email).