Agreement of data Generated from Routine Electronic hEalth records across primary and secondary care and a randomised controlled trial (AGREE): a cohort study assessing the accuracy of methods for long-term follow-up

PI Title: Dr Ariel Wang

Lead member: Oxford

Background:
Imagine you are trying to see if a new medicine is good and safe. The best way to do this is a clinical trial to compare the people who take the new medicine to those who do not. To do this well, we need to collect lots of information about people and their health ideally over a long time. This can be expensive. In the past 20 years, researchers have been trying to connect information from doctor visits, hospital admissions and other records that were saved on computers to make information collection easier and cheaper.
But we are not very sure how correct the information we use to decide who can join clinical trials is, or how good the data is when we follow up with people for a long time during these trials. Moreover, we don’t know whether the information collected from different sets of health records is the same. We need to do more research to make sure we can rely on computer records and get the correct information.
Right now, only a few researchers have checked if the computer records match the information we get during clinical trials. OPTIMISE-X project is a good chance for us to look into this and figure out how accurate the information is. This is important because we want to make sure the conclusions we reach from the information are correct and that the new treatments are safe and work well for everyone.

Aim:
This study wants to see if three different places where information is collected agree with each other. These places are where doctors keep records of people's health at the doctor's office, when people go to the hospital or pass away, and in a research project OPTIMISE-X.

Objectives:
Objective 1: Compare the information about who took part in the OPTIMISE-X project with what's saved on the computers in doctors’ offices.

Objective 2: Check if the information about when people got sick or went to hospital or passed away is the same in different record places.

Objective 3: Find out if the final results of the original OPTIMISE-X project change depending on where the information comes from.

Methods
We are going to use statistics to see if the information from different places matches up for Objectives 1 and 2.
For Objective 3 we'll repeat the original analysis, but this time, we'll use the information from the doctor's office, the hospital, and manually collected notes by a research nurse to see if the results stay the same.

Dissemination
What we find out from this study will help us to know if data from different sources influence trial results and inform the design of future efficient primary care based clinical trials.

Amount awarded: £27,676