We have already begun preparing for the Delphi launch and will update you in due course. The following timeline has been discussed and dates have been suggested for important milestones:
Delphi Round 1: March 10th – March 31st
Preparation for Round 2: April 1st – April 6th
Delphi Round 2: April 7th – May 1st
Consensus Meeting (Hybrid): May 11th – 12th
1. Identify what stakeholder group fits you best
Who is this study for?
2. Learn more about the aims of the study
What is an outcome?
When the health of an individual is evaluated, it is very important to know what effects of some condition are the most important and could affect their life the most. The same essential features inform the treatment testing and research. Outcomes can be described as the result of an intervention in a research, studying a particular domain.
In this project we want to determine what are the most important, ‘key’ outcomes in patients with food allergies.
For example, in a study testing patients’ recovery after hip fracture, an ‘outcome’ might include ‘mobility’ described as ‘changing basic body position; walking; moving around in different locations’.
Why are we doing this study?
Currently there is no single agreed approach for evaluating health and wellbeing of patients with food allergies. This problem is due, in part, to there being no universally agreed outcomes to measure.
Different researchers and health professionals around the world are measuring different outcomes. Hence, their results cannot be easily compared, potentially slowing the improvements in clinical care.
This study aims to find the outcomes that are essential to measure in food allergy research. These outcomes are called ‘core’ outcomes and will be included in the so-called ‘core outcome set’. In the future, new food allergy studies can ensure they measure these core outcomes in a harmonised fashion, which may lead to a more rapid improvement in clinical care.
Does it matter how an outcome is measured?
Deciding how each outcome should be measured is important and will be decided in the next stage of the study. In this Delphi study, we will be focusing on “what” outcomes should be measured. This means deciding which outcomes are the most meaningful for food allergy research.
Where can I find more information on outcomes?
You can watch a short [3 minute] video explaining what core outcomes are, why they are important and how patients and health professionals are involved in developing them here:
Subtitles are available in French, Portuguese, Dutch, Chinese, German, Spanish, Greek, Italian, Hungarian, Russian, Swedish, Bangla and Swahili languages.
3. Review our Q/A re participation and confidentiality
What does taking part involve?
The study will be run online and involves taking part in two surveys.
You can find out more about each survey and future steps below.
Are there any risks in taking part?
We do not expect there to be any major risks, although occasionally some people can find it upsetting thinking about outcomes related to their experience. If you do feel uncomfortable or distressed you can stop taking part at any time and you can provide feedback on any areas of concern.
Will I get paid for taking part?
There is no payment for taking part in the online survey or online consensus meeting.
Will my participation be confidential?
Yes. Your responses to the survey and contributions at the online consensus meeting will be labelled with a number rather than your name, to maintain confidentiality, and will only be looked at by members of the study team. Your email will only be used to contact you about this study.
How will we use information about you?
We will need to use information from you for this research project. This information will include your name and email. People will use this information to do the research. People who do not need to know who you are will not be able to see your name or contact details.
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.
- If you agree to take part in this study, you will have the option to take part in future research using your data saved from this study.
What if there is a problem?
If you are unhappy, or if there is a problem, please let us know by contacting the study coordinator at firstname.lastname@example.org and we will try to help.
4. Learn more about the main steps of the study
Step 1 – Survey 1 (approximately 10 minutes to complete):
At the end of the survey, you can also suggest any other important outcomes are missing from the list. You can add comments to explain your decisions.
Step 2 – Survey 2 (10-15 minutes to complete):
Now, when you rate the outcome, please think about how you and the other groups rated each outcome. This is a chance for you to consider the opinions of others and to reflect on your own previous ratings. We are trying to find out which outcomes people with lived experience, health professionals, researchers and others agree must always be measured.
After these two surveys
If you would like to be considered for a place at this meeting you can tell us at the end of the second survey. If this meeting is needed further information about what the consensus meeting involves will be sent to those who have expressed interest in taking part.
Results of the Study
If this is the case, your name will be included in a specific acknowledgements section of the publication. We will not present your individual thoughts on outcomes in the publication; rather all results will be presented according to the different groups that took part (i.e. people with lived experience, health professionals, researchers, etc.).
Taking part in the online surveys now does not mean that you must take part in future studies. However, when you register to take part, you can tell us if you would like to be kept up to date, by email, with opportunities to take part in the future.
5. Meet the COMFA team
Who are we?
We are an international team of health professionals, researchers and people with lived experience of food allergies. Our goal is to improve research and clinical care by identifying the most important outcomes of food allergies through collecting the views of different people from around the world.