Taking part in research is a fantastic opportunity to contribute to the improvement of future health care initiatives. The usefulness of research findings are dependent on the type and quality of the data researchers can access. In our next Mythbusting blog series, EDIT lab placement students Anna, Beth and Bronte explain why researchers might ask to access data from medical records and how this data can be used.
Why do researchers ask for access to my medical records?
A person’s medical record can be a valuable source of information, which compliments data collected specifically for research. Using multiple sources of information, such as medical records, questionnaire data, and DNA provides a really comprehensive overview, which can greatly improve the power of studies and the relevance of their subsequent findings. For example, a person’s medical history can help researchers understand if someone has responded well or badly to treatment, which diagnoses co-occur and crucially, how one condition can predispose to another later in life. This could allow for the identification of risk factors at the population level and enable preventative strategies to be targeted to at-risk individuals. Additionally, data on treatments will help us to understand which treatments work for whom and why.
What will you do with my medical records?
Research teams will only access sections of medical records that will be relevant and helpful to the goals of the study. Any information obtained will be given a pseudonymised ID number which is stored securely and separately from your personal information (e.g. name, date of birth), to ensure confidentiality. It will never be possible for researchers to alter medical records, as de-identified data will be downloaded from the server. This data will only be used in combination with survey responses and/or DNA, to provide more insights into factors that might help to predict the development and/or treatment of specific conditions. There are strict regulations which determine who can access patient data for research purposes. These regulations also ensure that data is stored on IT systems that are designed to have high security and privacy, and which have strict access policies and processes with low risks to participants.
Will you have access to my doctor’s notes?
It is highly unlikely that doctors’ notes will be read on an individual level (given that data on thousands of individuals is required for these research purposes). Broader information such as the type of treatment received, the number of treatment sessions attended, and records of how well the treatment worked (or did not work) may be accessed, for group level analysis. It is also possible that some researchers might try to analyse text to identify the presence of specific words and phrases to help understand risk factors and outcomes for distinct conditions.
In conclusion, ethically approved research studies (e.g. the GLAD Study) may request access to data from medical records. This is done in order to identify factors associated with the development of diagnoses, as well as treatment successes and failures. A common goal of mental health research is to develop tools which enable better prediction, prevention and treatments, which we hope will improve the quality of life for those experiencing these devastating conditions. Medical records are a valuable source of information that will improve the power of research studies to find relevant discoveries, and thus could enhance predictive algorithms derived from the data. Hopefully, this will improve both prevention and treatment for future generations.