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Table 1 Data linkage scenarios

From: Young people’s views about consenting to data linkage: findings from the PEARL qualitative study

Scenario 1:
The Government is concerned about the number of teenage pregnancies in the South West. Concerned that the safe sex messages are not reaching the right people, they have asked for some research to be carried out. They linked information from medical records with information about what benefits a young person or their family received. They wanted to see if wealth influenced teen pregnancies.
Scenario 2:
Researchers wanted to know if birth weight and living conditions were related to risk of getting heart disease in later life. They used about 15000 birth records and linked them up with other information, including death records. About 3000 people had already died by the time the study started. Results showed that low birth weight is linked to high blood pressure, increased risk of diabetes, and reduced bone strength. This study showed that risks to babies during pregnancy can affect health later in life.
Scenario 3:
Recent research has shown that people with mental health illnesses are more likely get into trouble with the police. Much of this research is based on what people tell researchers. It has been suggested that people don’t always tell researchers if they have mental health illnesses or if they have been in trouble with the police. Researchers want to see if mental health service users were getting the right kind of support. They searched medical records for ones coded to say they had a mental health illness and then looked in police records to see if that person had been in trouble with the police.
Scenario 4:
Over the last few decades there has been a rise in the number of young people being diagnosed with asthma. Researchers in Bristol have put together a database of information about the environment. They know how close together buildings are in certain areas and how much traffic there is across Bristol. They now want to map the locations of young people with asthma. To do this they look at GP records and then use the postcodes of the young people with asthma to see that more people get asthma where there is a lot of traffic.