This workshop focuses on gaining feedback from the public on a range of safeguards which could be put in place to enable your medical data to be shared for research, whilst keeping your identity and privacy safe.
Clinical information written in patients’ medical notes contains a wealth of information which could be unlocked for research to improve health and wellbeing. Researchers are often refused access to this written text because of concerns about privacy breaches. Healtex, the research network for healthcare text analytics, are seeking to draw up a national framework for data governance and safeguards for the acceptable use of medical free-text data from patient records within research for public benefit.
About the event
- Who should have access to your anonymised medical records for health research?
- What would you like to know about health research that uses anonymised health records?
- What do you think the benefits and concerns are when sharing anonymised health records in health research?
We are keen to hear your thoughts.
During the workshop, you will hear about our proposals to enable patient data in written reports and notes to be used for research, while still safeguarding patients’ data and privacy. You will hear examples of how this data could benefit patients by being re-used in health research, as well as information about the risks of using this data. You are invited to explore the pros and cons of our proposals, and to give us detailed feedback on any concerns you have including ideas for solutions.
We have developed a set of safeguards which we think will protect the data while allowing researchers to use it, and we want to hear your views on whether these meet your expectations. Feedback from this event will be used to develop health research policy, which will help to guide the data-sharing decisions of NHS trusts, ethics committees and researchers.
Most patients are willing for the data in their medical records to be shared for research to help others. Most people prefer that either they give their express consent for data to be shared, or that their data is properly anonymised so that they can’t be identified from it.
However, huge amounts of rich medical information, which would help health research, is found in the letters and reports that doctors send to each other about patients, and in the clinic notes they make during patient visits. These letters and notes are written in plain language, and not structured in clinical coding systems.
It can be challenging to make these sources of health information anonymous, as names could be written anywhere in the text, and so, routinely, crucial information is not used for research purposes at the moment.
Computer scientists are advancing ways for computers to read plain language, such as in doctors’ letters, and extract out the relevant information. This means that the valuable data in letters and notes could be analysed for thousands of patients, without researchers knowing their identities, and new insights gained for health conditions and treatment for the whole population.