As child health researchers, we recognise the importance of public and patient involvement (PPI) to improve the research at every stage.
This helps ensure that the right questions are asked at the outset, and that study findings are effectively communicated using appropriate language and channels for children and young people.
Talking to children about complicated topics surrounding the use of personal data is also important, as issues around data security and consent become more important in our increasingly data-driven society.
These concerns have been recognised by the government: the 2018 Data Protection Act and General Data Protection Regulation provides enhanced and updated rules to safeguard individual personal data.
Better support services for children and their families
Involving and engaging children and young people in research is particularly important in rare diseases and rare health outcomes, such as visual impairment in childhood.
One project our team is working on aims to understand the longer-term health, education and social outcomes of children with full spectrum visual impairment. This impairment can span from moderate visual impairment to blindness.
To do this, we will link together the electronic hospital, mortality and education records of children with visual impairment in two national surveillance studies. This process is commonly referred to as data linkage.
Analysing healthcare and education data
Findings from this valuable data will help inform and support the planning and specialised commissioning of NHS and support services for children with visual impairment. They will also provide much needed information for families of affected children.
As this study is carried out in the public interest, we will analyse routinely collected healthcare and education data without the need for individual consent. We were given section 251 approval from the Confidentiality Advisory Board to do this, in recognition of the public health importance of childhood visual impairment.
Involving children and young people in our research
We wanted to discuss two important topics with children and young people affected by and interested in eye and vision research:
- The concept of ‘unconsented data’.
- The important reasons why we plan to use this kind of data.
We approached the ‘eye-YPAG’; a Young Persons Advisory Group run by the National Institute for Health Research Moorfields Biomedical Research Centre which focuses on eye and vision research.
In the first meeting, we discussed the purpose of our study, defining unconsented data and the best ways to let children and young people know about the study. In a second, virtual meeting during the COVID-19 pandemic, we asked YPAG members for their feedback to help create a child-friendly and accessible study privacy notice.
The group helped us to tailor the wording to a young audience. Crucially, they also helped us ensure that the format and layout was accessible for children who are visually impaired and have other eye conditions.
Explaining through relatable examples
As the group contained a wide range of ages, we found that explaining complex concepts such as ‘unconsented data’ was more challenging for the youngest members. Using age-appropriate examples helped the youngest children understand by drawing from their own experience.
The group showed some very perceptive insights. It was clear from the outset that children and young people are very aware of digital security and privacy issues relating to personal data. They also recognise the importance of using health data in research for patient benefit by academic institutions.
Helpful tips to reach a young audience
We found it helpful to show an animated video which summarises the concept of data linkage, and included examples of research studies using linked data. This was very helpful to break up the session and keep the group engaged when explaining difficult topics.
A recommendation, suggested by the YPAG members themselves, was to include a glossary of ‘tricky terms’ with explanations so children and young people could reference the definitions in electronic documents.
By speaking directly with children and young people (both in person and virtually) we gained their honest opinions on our research questions. And they helped make our study documents accessible for children with eye and vision disorders.
PPI should be a mainstay in all childhood eye and vision research, particularly for ‘data only’ studies as researchers can engage directly with patient representatives themselves.
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