The PONCHO study
Type: Qualitative research
Funder: National Institute for Health and Care Research (NIHR) Manchester Biomedical Research Centre
Sponsor: Manchester University Hospital NHS Foundation Trust
When researchers are looking to summarise an area of research that many different people have written about, they will often perform something called a systematic review. These systematic reviews allow researchers to collect data from the most relevant scientific papers. Combining the results of multiple studies gives us more confidence that we are doing the right thing.
One difficulty that researchers find when performing a systematic review is that different studies evaluating how good the same treatment is, often measure different things, or ‘outcome measures’. One way of dealing with this issue is the use of core outcome sets. These core outcome sets prescribe a list of outcome measures that should be used as a minimum when researching a particular topic.
What is the PONCHO study?
Prioritising Outcomes in Children with Hearing lOss (PONCHO), is a study aiming to produce a set of things to measure in research studies looking at benefit after an intervention for hearing loss. We are really interested in making sure that the recommendations for things to measure, include those most important to children, young people and their families. If we design research that measures the most important outcomes for those with lived experience of hearing loss, we can be more confident that the results are meaningful in the ‘real-world’.
How does PONCHO work?
PONCHO is a study that encompasses several smaller tasks. We have already carried out interviews with children and young people with hearing loss and their families, and used these interviews to identify issues that they believe are important based on their experience of hearing loss. We are reviewing what outcomes are measured in the existing published scientific research. We will combine the results of these two processes into a long list of outcome measures that will be presented to the next stage: an eDelphi process.
The eDelphi process
The eDelphi is a process in which several ‘stakeholder’ groups such as children, young people, parents, carers, researchers and hearing specialists (audiologists) and doctors vote online on which outcome measures they think are most important. There are two rounds of voting, with participants having the opportunity to change their answers after seeing a summary of the voting from other stakeholder groups. There is no ‘right answer’ – we want to know which outcomes are most important. Through doing this we hope to reach a consensus on what outcomes should be included in the final core outcome set. It is our hope that by including in our eDelphi the findings from our interviews with people with lived experience, we can produce a core outcome set that is more inclusive and more relevant to those living with hearing loss.