What next?
What next?
About this study
The purpose of this survey is to explore the potential impact of using digital health for respiratory conditions on access to, and delivery of care, in NHS settings. By Digital Health, it means the use of technology to assist in receiving care remotely, where individuals and the healthcare providers are at distance, and not in person contact. This can be through phone calls, video calls, text messages, applications, or any type of device to record your medical information. It allows patients to share health information, contact their healthcare team, or have appointments through video calls. Whether you are a user of digital health or not, the researchers are interested in learning more about your respiratory condition and/or your perspectives on digital health.
The researchers hope that this survey will help to understand the role of digital health in managing care for individuals with respiratory diseases in the UK.
There are many different types of research. These studies might ask participants to test different treatments, devices, or complete questionnaires. Some studies may not require any involvement from people affected by PF, but instead look at cells in a lab environment, animal models, or utilise computer modelling.
A study involving people can be:
- Interventional – participants are given an active treatment decided by researchers. This could be a change in medication or lifestyle (e.g. exercise, diet, complementary wellbeing therapy, or symptom management). These are commonly known as clinical trials.
- Observational – participants are assessed for specific changes over time, but researchers do not alter their standard treatment or care (e.g. questionnaires to understand the impact of symptom, or patient registries that track trends in how disease affects people or the services that are provided).
There are 3 main phases of clinical trials:
- Phase 1 is the earliest stage of research, where there is often a focus on understanding if the treatment is safe or if it causes any side effects.
- Phase 2 still focuses on safety and side effects, but also tries to find out more about what is the best dose.
- Phase 3 often compares the new treatment to existing treatments or lookalike medications.
As drugs or interventions move into the different phases, the number of people taking part will increase. Not all studies will make it to the later phases, especially if the intervention is not found to be safe or effective in phase 1 and 2.
The recruitment aim is the number of people that researcher want to take part in the research study.
What is involved?
If you decide to take part, this will involve completing a survey about digital health and respiratory diseases. This should take approximately 20 minutes of your time to complete the survey. The survey can be completed online, or if preferred, a paper version can be requested from the research team and sent to you by post.
Summary of involvement
20 minute survey
The survey can be completed online or by requesting a paper copy to be sent by post.
Can I take part?
You may be able to take part if you are over the age of 18 and have a chronic respiratory condition, such as pulmonary fibrosis.
In research studies, there are lots of different reasons why you may or may not be able to take part. These are known as inclusion and exclusion criteria (see the main criteria list below). Only the research team will be able to fully determine whether you are able to take part in the study. You can withdraw at any point without this effecting your usual care or treatment.
If you are not able to take part in this research study, there may be other opportunities for you to take part in different studies.
To find out more about other research opportunities visit our research finder main page.
You are aged 18 years or older.
You have been diagnosed with a chronic lung condition, such as an interstitial lung disease (including pulmonary fibrosis).
OR
You are a healthcare professional who is working in the field of respiratory medicine.
Individuals under the age of 18, those with insufficient fluency in English, or individuals currently receiving palliative care.
What difference could taking part make?
By taking part in this study, you will help us understand the current practices of using digital health in respiratory diseases. This will assist us in developing guidelines to provide better care.
Where does the study take place?
Study locations
Online
How to take part
This online survey will open on the 29th September. A link will be posted here on that date.
Alternatively, you visit the following link to request a paper copy to be sent by post: https://exe.qualtrics.com/jfe/form/SV_eaqPvjqxP06ITuC
Please feel free to contact the Principal Investigator for questions or further details via ha561@exeter.ac.uk
Further information
This page is a summary which provides information about an opportunity to participate in research. More detailed information about the study can be found via the following the links and through contacting the research team.
If you have any questions about this research study, please speak to your medical team.
ha561@exeter.ac.ukThis study is supported by
This page provides a lay summary of the research study and does not contain all the information needed to inform decisions about taking part. Please speak to your medical team or the study research team in relation to specific details about the study.
Action for Pulmonary Fibrosis does not endorse or recommend any specific study. All responsibility for the study remains with the sponsors and investigators. Every effort is made to ensure that these details are correct and are kept up to date. If you are aware of any inaccuracies, please email research@actionpf.org