Over 330 health and social care organisations are sharing their non-identifiable record information for research. Approved research projects can access this information, which represents over four million patients, to improve understanding.
Dr Klaus Witte, cardiologist and heart specialist in Leeds, gives his views on data sharing.
“Sharing data is crucial for moving clinical medicine forward. Access to large data sets mean we can get more accurate information. Once trends have been identified, feedback can be given to clinicians so they can ensure they are delivering appropriate care.”
“By not only collecting data but also assessing and improving care pathways, we can identify what works well for patients – and crucially, what does not.”
Klaus recognises the ethical concerns in sharing information. “Patient care is an ongoing process and everyone should participate. Whilst it is true that research groups and health care institutes such as NICE often have to use personal details such as age group or gender to look at how a treatment affects different groups, this can be de-identified. By using established de-identification protocols to enable data sharing, researchers can access more clinical information and so make more personalised, effective, and value-for-money medicines.”
“Provided that the data is handled sensibly and ethically, it can be said that not using data to learn about what improves quality, equity, and access to treatments is unethical toward future patients.”
ResearchOne was designed because organisations using SystmOne were asking how they could contribute their centrally integrated records information to research.