A poll of the public showed that only 21% of people would feel confident about asking their doctor about research opportunities.
As a result of this, the National Institute for Health Research (NIHR) started a campaign called, ‘It’s OK to Ask’. This 2013-14 campaign encourages the public, patients and medical professionals to talk about clinical research and to get more people involved.
How do you come up with a good question?
Coming up with questions for research projects isn’t always easy. In the past most questions came from people working with people born with cleft lip and/or palate, as they wanted to look at how to improve care.
Recently there was a big consultation with a wide range of people including patients, their families and carers and cleft team members. The James Lind Alliance brings together all of these people and helps them to identify treatment uncertainties and to set priorities for research – put simply, this just means finding out which questions we should be trying to answer through research.
This was a long and extensive process which has been used in the past to look at other areas of healthcare, and from this process a list of 12 priorities for cleft lip and palate care were published. This list isn’t supposed to cover everything – it’s just supposed to be a clear summary of shared priorities for research in cleft lip and palate, and it is very useful when putting together a strategy for research in the UK.
The top 12 questions around cleft lip and palate
The top 12 priorities for cleft research as defined by the James Lind Alliance are as follows:
- What types of psychological intervention (individual therapy, community or school based) and at what time (from diagnosis to adulthood) are most helpful for patients with a cleft of the lip and/or palate and their families?
- What are the educational, employment and personal (eg relationships) outcomes for individuals with a cleft of the lip and/or palate during childhood, adolescence and in the long term?
- What is the best protocol for primary repair of both the lip and palate, including technique/timing and sequence?
- In individuals with a cleft of the lip and/or palate when is the most effective age to begin speech therapy?
- What is the best treatment for otitis media with effusion (glue ear) in individuals with a cleft of the lip and/or palate?
- Can stem cells be used to improve palate repair (both primary and secondary)?
- What interventions would enhance the educational outcomes for children with a cleft of the lip and/or palate?
- What is the impact of having a baby born with a cleft of the lip and/or palate on maternal/child attachment?
- What is the best way to manage infants with a cleft of the lip and/or palate undergoing primary surgery before, during and after hospital Eg. Fluids, pain control, antibiotics, probiotics, arm splints, feeding practices?
- What are the genetic and environmental causes of clefts of the lip and/or palate?
- How can we improve the diagnosis of cleft palate (without cleft lip)?
- What is the best way to prevent tooth decay in children with a cleft of the lip and/or palate?
What makes a good research question?
The National Institude for Health Research (NIHR) has a fantastic page on their website to help members of the public to understand what sort of questions they are looking for and how you can go about submitting your question for consideration.