I genuinely believe that we can use patient data for good, in ways that are not exploitative and respect people’s right to privacy. In fact, I could not do my job without using this type of data. For example, most of the research studies I work on use data about real patients, to help understand how we can make healthcare services better. I also use this type of data to help hospitals measure and improve the quality of care that patients with stroke receive, and to help plan public health services.
Information about our health is some of the most private and personal information there is, and how this data is used is extremely sensitive. Explaining to people how this data is used in ways that people understand is therefore essential, but something that we have been quite poor at doing in the past. One of the reasons for this is that it is very easy to slip into using technical jargon, using language that we assume that other people understand, but which they do not.
Phrases like “psuedonymised”, “information governance” and “data controller” don’t mean very much to many people. By making it hard for people to understand the language of data sharing, we are locking people out of making meaningful decisions about how patient data is used. This is ethically troubling, and has probably contributed to generating fear and mistrust about how patient data is used.
Understanding Patient Data is a new initiative by the Wellcome Trust which has recently done some great work to show us how we should be talking when explaining or asking how patient data is used. After carrying out focus groups with experts and patients, they have produced some very useful, and very clear, guidelines:
- The term “patient data” is well understood by most people
- Use “patient” and not other terms like citizen, user or consumer
- Avoid using “personal data” – people often think that this means that the data are identifiable rather than being anonymised
- Use data in the singular…always (sorry Grammer fans)
- Use the term “individual care” not “direct care” when talking about data for people’s own treatment
- The phrase “improving health, care and services through research and planning” is much better than terms like “secondary uses” to describe how patient data can be used for other uses apart from individual care
- Pictures are powerful ways of explaining what removing identifiable information means
- Be clear and specific about how much and what kind of data is used, and avoid general terms like “medical records”
- It’s often better to say “using data” rather than “sharing data”, as this makes it clear that controls are in place to make sure that any data is used responsibly better than saying “data sharing agreement”
I think that these findings are going to be incredibly helpful. The idea behind this project was to improve communication when discussing using data for research, but I think that these tips are just as valid for other uses of patient data, such as audit, quality improvement and surveillance.