This page provides information to patients who have been invited to sign up to take part in a research study about their asthma and/or COPD
We are inviting you to take part in a research study assessing how support for asthma and chronic obstructive pulmonary disease (COPD) patients may improve their condition.
You do not have to take part if you do not want to.
Please read this information which will help you decide.
Study title and ethics review
Research Title: A research study to explore the impact of GP support via text message to patients with asthma and/or COPD on self-reported symptoms and inhaler adherence.
IRAS Reference Number: 316452
This trial has been reviewed by an independent ethics committee (North West - Liverpool Central Research Ethics Committee; REC Reference: 22/NW/0332) whose role is to protect your safety, rights, wellbeing and dignity.
Why am I being asked to take part in this research?
You have been diagnosed with asthma, COPD or both by your doctor, and you have been prescribed a preventer/regular inhaler (i.e. an inhaler that you are supposed to take every day to stop your symptoms occurring).
Research has shown that many people don’t use their preventer inhaler as often as they should. Some other research has shown that more contact and support from a doctor might support patients with their condition.
We are inviting patients with asthma or COPD who have been prescribed a preventer inhaler to take part in this research so we can look further at whether more contact and support from a doctor can help patients with their condition.
Research like this helps to continually improve the care provided to all patients now and in the future.
Do I have to take part?
No. It is entirely up to you to decide. If you do not want to take part that’s OK. Your decision will not affect the standard of care you receive from the NHS in any way.
If you decide not to take part, you will continue to receive exactly the same care as you currently receive.
If you do decide to take part you are free to withdraw at any time, without giving a reason, at the link that will be sent to you via SMS. Information collected up to that point will still be used.
What will I need to do if I take part?
If you agree to take part in this research, you will be asked to complete a consent form online and then a short questionnaire via text message about your asthma/COPD and the medication you’re taking a few days later. We will ask you to complete this questionnaire at three points in time over the next 6 months, at baseline, 13 and 26 weeks. You might also be contacted via SMS for the purpose of the study. At the end of the study you may also be asked to complete a short optional feedback survey about how you found taking part in the research.
You do not need to do anything more. All the information needed for the research (but not anything that could identify you) will be contained in your responses to the questionnaires or with your consent collected from your medical records and shared securely with the researchers.
If you choose to take part in this study, it will last for 6 months. You will not have to make any extra visits to your doctor over and above those needed for your normal care. At the end of the study, all participants will receive an End of Study notification via text message.
What are the risks?
There are no risks involved in taking part in this research.
What information will be collected about me in this study?
Two types of personal information will be collected about you:
(1) The information that you provide in the questionnaires (see above) about your asthma/COPD and medication taking.
(2) Information about your past and future inhaler prescriptions. With your consent, this information will be taken from your medical records.
What will happen to information collected about me in this study?
Your GP will have access to all data collected about you in this study, including your survey responses. The information above will also be shared with the research team at Accurx solely as part of the study. All information will be securely stored and only accessible by select members of the Accurx team. No identifiable information will ever be shared outside Accurx and your GP practice.
How will we use information about you?
We will need to use information from you and from your medical records for this research project.
This information will include
Your initials
NHS number
Name
Contact details
People will use this information to do the research or to check your records to make sure that the research is being done properly. People who do not need to know who you are will not be able to see your name or contact details. Your data will have a code number instead. We will keep all information about you safe and secure.
Once we have finished the study, we will keep some of the data so we can check the results. We will write our reports in a way that no-one can work out that you took part in the study.
What are your choices about how your information is used?
You can stop being part of the study at any time, without giving a reason, but we will keep information about you that we already have.
We need to manage your records in specific ways for the research to be reliable. This means that we won’t be able to let you see or change the data we hold about you.
Where can you find out more about how your information is used?
You can find out more about how we use your information
Who is organising and funding the research?
This study is being carried out by researchers at Accurx. The research is also funded by Accurx. Accux supports healthcare teams communicating with each other and patients. Accurx is an NHS Digital supplier, certified by ISO 27001 and Cyber Essentials Plus, and is fully GDPR compliant.
Thank you for reading this information and for considering taking part in this research
Further information
If you have any further questions or queries regarding the study please email research@accurx.com. You may also obtain more detailed information about this research, including how your medical information will be used and your privacy protected via the same email address research@accurx.com. Accurx will respond to all questions regarding the study.
If you want to receive the PIS via email then please contact us at research@accurx.com with the email address that you'd like us to send the PIS to, with the subject title “Inhaler Study - Patient Information Sheet requested” and it will be emailed to you.
Contact details
Chief Investigator: Dr Luke Twelves
PIS Version No.: v.3.0
Date: 3 January 2023
Accurx Short form privacy notice (UK). This privacy notice provides information on how Accurx Limited (“Accurx”) will collect and process your personal data if you decide to participate in this research study (“Research Personal Data”).
Please read this privacy notice together with our website privacy policy which contains more detailed information about our data processing and can be accessed here.
1) Important information and who we are
Accurx provides software to enable health and social care teams to communicate with each other and with patients. Our company details and our registration with the UK’s Data Protection Regulator (the ICO) can be found here. Accurx is the controller and responsible for your Research Personal Data.
If you have any questions about this privacy notice or our data protection practices, please contact us at support@accurx.com.
2) The data we collect about you
We may collect, use, store and transfer different kinds of personal data about you as follows:
Identity Data, including your name, date of birth, and NHS number
Contact Data, including your phone number, e-mail id, address
Healthcare Data (including your questionnaire responses and information from your medical record)
We collect your data when you sign up for the study, during, and after the study.
3) How we use your Research Personal Data
If you consent to participate in this study, we will process your data to send you text messages and we will collect Personal Data from you by sending you questionnaires and by collecting information about your inhaler prescriptions from your medical record for the duration of the study. Once you consent to participate in the study, we will use your Research Personal Data to carry out the study based on our legitimate interest as a controller.
We will only use your Research Personal Data for the purpose for which we collected it which include the following:
To register you as a participant in the study
To manage your relationship with us
To evaluate the results of the study
We are inviting patients with asthma or COPD who have been prescribed a preventer inhaler to take part in this research so we can look further at whether more contact and support from a doctor can help patients with their condition. Once you agree to participate in the study and provide Research Personal Data to us, we process your information on the basis of our legitimate interest.
Research like this helps to continually improve the care provided to all patients now and in the future.
4) Do I have to consent?
No. It is entirely up to you to decide. If you do not want to take part in the study, you do not have to provide us any information. Your decision will not affect the standard of care you receive from the NHS in any way. If you decide not to take part, you will continue to receive exactly the same care as you currently receive.
If you do decide to take part you are free to withdraw at any time, without giving a reason, at the link sent to you via SMS. Information collected up to that point will still be used. For further details about your access rights and other rights in this regard, please click here.
5) How we share your Research Personal Data
We will share your Research Personal Data with your GP practice.
6) International transfers
We do not transfer, store, or process your Research Personal Data outside the UK.
7) Your legal rights
Under certain circumstances, you have rights under data protection laws in relation to your Research Personal Data including the right to receive a copy of the Research Personal Data we hold about you and the right to make a complaint at any time to the Information Commissioner's Office, the UK regulator for data protection issues (www.ico.org.uk).
More detail can be found here.
8) Further details
If you are looking for more information on how we process your Research Personal Data including on data security, data retention and lawful processing bases, please access our website privacy policy.
Once you have read this, please head back to the previous tab to continue signing up.
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