Several child health services, which are supporting OPTIMA, are using an online portal called myHealthE. It is a new secure NHS digital platform developed to update the way Child and Adolescent Mental Health Services collect health information about young people who are in contact with their services. Instead of asking parents to complete paper questionnaires about their child’s symptoms, MyHealthE identifies when families are due to fill out new questionnaires and sends text and email reminders to complete the forms online. MyHealthE can be used on a smartphone, tablet or computer that is connected to the internet.
myHealthE also helps families to register their interest in taking part in research studies (such as OPTIMA). For parents, who would like to be involved in future research projects, the first step is to indicate on the myHealthE portal that they give consent to join the NHS researchers’ contact database, also known as ‘consent for contact’ database. This tells approved NHS Trust researchers that a parent is willing to be contacted about upcoming studies. Parents can also indicate, at any time via myHealthE, if they want to be removed from that database.
By joining the consent for contact database, parents are not agreeing to take part in a particular project. Instead, they are giving researchers permission to look at their child’s medical records to check which research projects they may be suitable for based on information about their health status, including, their symptoms, their diagnosis, or their treatment. All researchers work for or hold an honorary NHS contract and are approved to access patient records.
If a family is eligible to take part in a particular study, such as OPTIMA, a researcher will contact them to discuss what will be involved in more detail and give them an opportunity to ask any questions. Only once a parent is happy to continue, the researcher will ask for their consent, and it is then up to the parent to decide if they want to take part or not. No matter what the family will decide, their child’s care will not be affected by this decision.