Healthy Living Diabetes - Long-term Independent National Evaluation

(HED-LINE)

Interview Information Sheet

You are being invited to complete an online survey to register your interest to take part in an
interview about your experience of the ‘Healthy Living’ diabetes programme (an online self-
management programme for people diagnosed with type 2 diabetes).

Before you decide whether or not to register your interest to take part, it is important for you to
understand why the interview is being done and what it would involve if you were selected to take
part in an interview. Please take time to read the following information carefully before deciding and
discuss it with others if you wish. Thank you for taking the time to read this.

What’s involved?

 Why have I been invited to complete the online survey?

We are looking to interview people to find out what parts of the Healthy Living programme people
have used, which parts people enjoyed and found useful, and which parts people found not useful or
difficult to use. You have been invited to complete the online survey because you are a registered
user of the Healthy Living programme. We are asking these questions in the online survey to ensure
that we select a wide range of people with type 2 diabetes to be interviewed.

 What happens if I complete the online survey?

By completing the online survey, you are registering your interest to take part in an interview.
Completing the online survey does not guarantee that you will be selected for an interview.

 How will I find out if I have been selected to take part in an interview?

If you are selected to take part in an interview, a researcher from the University of Manchester will
contact you by email or telephone within 14 days of you completing the online survey.

If you are not selected to take part in an interview, you will not be contacted.

 If I am selected to take part in an interview, what will the interview involve?

If you are selected to take part in an interview, and if you decide to take part, a researcher will
interview you by telephone, Zoom or in person, at a time convenient for you. The interview will be
audio-recorded and last up to 50 minutes. We will ask you some questions about your health (what
conditions you have been diagnosed with) and demographic characteristics (such as your age,
gender, ethnic background). This is to make sure that the characteristics of the people we interview
match as far as possible those of the wider population of people with type 2 diabetes. If you agree to
a telephone or Zoom interview, the health and demographic questions will be audio-recorded

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separate to the interview audio-recording. For interviews that are conducted in person, we will ask
you to fill out a form (hard copy). This will last up to 10 minutes.

 What happens if I do not want to take part in an interview?

It is up to you to decide whether or not to register your interest to take part in an interview. If you
do not want to take part in an interview, you do not need to do anything further.

If you are selected to take part in an interview after completing the online survey, you will be
contacted by a researcher from the University of Manchester to discuss the interview and what will
be involved, and you can ask any questions or other issues that you have. You will be provided with a
detailed participant information sheet and the researcher will arrange a time to discuss further once
you have read the participant information sheet. At this point, you can decide if you still want to
take part in an interview. You will still be free to withdraw at any time without giving a reason and
without any harm or disadvantage to yourself. If you decide not to take part, your Healthy Living
diabetes programme will not be affected.

Data Protection and Confidentiality

 What information will you collect about me?

In order to register your interest to participate in an interview we need to collect information that
could identify you, called “personal identifiable information”.

Specifically, we need to collect:

 Gender
 Age group
 Ethnic group
 Postcode (to allow a measure of how wealthy your neighbourhood is, and where you
are geographically)
 Time since diagnosis of type 2 diabetes
 Your name
 Contact details (your email address or telephone number)

This information will be used to ensure we select a diverse range of patients to be interviewed. Your
name and contact details will only be used so that we can contact you if you are selected for an
interview.

 Under what legal basis are you collecting this information?

We are collecting and storing this personal identifiable information in accordance with UK data
protection law which protect your rights. These state that we must have a legal basis (specific
reason) for collecting your data. For this study, the specific reason is that it is “a public interest task”
and “a process necessary for research purposes”.

 What are my rights in relation to the information you will collect about me?

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You have a number of rights under data protection law regarding your personal information. For
example, you can request a copy of the information we hold about you.

If you would like to know more about your different rights or the way we use your personal
information to ensure we follow the law, please consult our Privacy Notice for Research:
http://documents.manchester.ac.uk/display.aspx?DocID=37095.

 Will my personal identifiable information be protected?

In accordance with data protection law, The University of Manchester is the Data Controller for this
project. This means that we are responsible for making sure your personal information is kept
secure, confidential and used only in the way you have been told it will be used. All researchers are
trained with this in mind, and your data will be looked after in the following way:

 The personal identifiable information you provide through the online survey will be stored
and viewed within a University of Manchester approved password-protected platform
(called RedCap). Only the research team access to this secure platform.
 The research team will not have access to your NHS number or other personal identifiable
information such as medical details, patient history, home address or date of birth. The
research team will not receive any information about you from the Healthy Living diabetes
programme service providers.
 The information you provide through the online survey will be used by a researcher, who will
purposefully select patients to be invited for an interview to ensure diversity in age, gender,
ethnic group, deprivation (based on deprivation indices using your postcode) and time since
diagnosis. Postcodes will only be used to identify deprivation indices using the UK
Government’s postcode lookup for English indices of deprivation 2019 (https://imd-by-
postcode.opendatacommunities.org/imd/2019), which tells us how wealthy an area is.
 Your name and contact details will only be used to contact you if you are selected for an
interview.
 All information from patients who are not invited for an interview will be deleted as soon as
possible (this is usually within 14 days of survey completion).
 All hard copies of any papers and notes will be kept in a locked cabinet at the University of
Manchester. Electronic data such as typed notes will be stored on the University of
Manchester password protected secure server.

 Who has reviewed the research project?

The research has been approved by Yorkshire & The Humber – Leeds West Research Ethics
Committee (REC Ref: 20/YH/0250).

 Who is funding the research project?

The research is being funded by the National Institute for Health Research through a policy research
programme grant (reference number: NIHR200933).

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What if I have a complaint?

 Contact details for complaints

If you have a complaint that you wish to direct to members of the research team, please contact:
Prof David French
University of Manchester
Address: Coupland 1 Building, Coupland Street, Oxford Road, Manchester, M13 9PL
Tel: 0161 275 2605
Email: david.french@manchester.ac.uk

If you wish to make a formal complaint to someone independent of the research team or if you
are not satisfied with the response you have gained from the researchers in the first instance then
please contact:-

The Research Ethics Manager, Research Office, Christie Building, The University of Manchester,
Oxford Road, Manchester, M13 9PL, by emailing: research.complaints@manchester.ac.uk  or by
telephoning 0161 306 8089.

If you wish to contact us about your data protection rights, please email
dataprotection@manchester.ac.uk or write to The Information Governance Office, Christie Building,
The University of Manchester, Oxford Road, M13 9PL at the University and we will guide you
through the process of exercising your rights.

You also have a right to complain to the Information Commissioner’s Office about complaints
relating to your personal identifiable information Tel 0303 123 1113

In the unlikely event that something does go wrong and you are harmed during the research you
may have grounds for a legal action for compensation against the University of Manchester but you
may have to pay your legal costs. The normal National Health Service complaints mechanisms will
still be available to you.

Contact Details
If you have any queries about the research then please contact the researcher:

Dr Jack Benton
University of Manchester
Address: Coupland 1 Building, Coupland Street, Oxford Road, Manchester, M13 9PL
Email: jack.benton@manchester.ac.uk
Tel: 07564 571 430

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