This study will describe the opinions of young people and their parents/guardians and their attitudes towards linking routinely collected healthcare data to produce a Scottish dataset for pharmacovigilance.
Our aim is to find out:
- What young people and their parents/guardians know about how the safety and effectiveness of medicines used in children is currently monitored?
- Do they know what routine data is collected nationally?
- Would they have concerns if existing datasets were linked?
- How could any concerns be addressed?
We are taking a mixed methods approach using interviews, focus groups and a national questionnaire.
Semi-structured interviews will be held with key stakeholders including representatives of children/young people’s groups e.g. the Scottish Youth Parliament; national patient support groups; and representatives of the public. The interviews will be conducted face to face, or by telephone or using Skype and will be recorded and fully transcribed for analysis. A framework approach will be applied to the emergent themes and subthemes identified. Initial content setting focus groups will be held across Scotland to ensure a range of geographical locations, urban and rural settings and population deprivation indices are represented. Children, young people and their parents/guardians will be invited to take part in the focus groups via local libraries, schools and voluntary organisations. The data collected from the interviews and focus groups will inform the design of a questionnaire that will be sent to a random sample of 1000 parents/guardians and 1000 young people from the Scottish population.
This study will identify the attitudes, and any concerns, of children, young people and their parents/guardians towards data linkage and using routinely collected healthcare data for research. We will propose solutions to acknowledge and address any issues or concerns raised. This study will inform the approaches taken in the 'Evidence Synthesis' and 'Pharmacovigilance' projects, to ensure that the construction and use of routinely held NHS data for pharmacovigilance is acceptable to the general public and something that they see as effective and a good investment of public money.
If you would like more information please contact Emma Scobie-Scott (firstname.lastname@example.org).