Data sharing: positive patient outomes?
Meanwhile, the European Commission has expedited plans to bring in new data protection laws since the Snowden revelations brought the importance of privacy issues to the general public. However, it has been suggested by Peter Knight of the UK Department of Health that new EU rules on data protection would make research ‘impractical’.
With so much attention focused on the risks of data sharing and how to manage those risks, it is easy to overlook the significant positive impacts sharing health data has had on aspects of health, safety and health service quality to date. The practice could have huge positive benefits for healthcare.
HealthShare, a statewide Australian organization focused on anonymized health record data sharing, for example is helping healthcare professionals to support patient care through clinical data exchange.
Elsewhere, access to hospital data has undoubtedly improved patient safety. In the UK mortality statistics have been credited with highlighting issues such as high numbers of unexpected deaths at particular hospitals/trusts and, more recently, the fact that more patients are likely to die after surgery performed on or close to the weekend has been noted.
In Europe, an agreement a decade ago between the Gustave Roussy Institute in France and the MD Anderson Cancer Center at the University of Texas brought about a successful collaboration that developed studies on particular therapies and, in the name of improving cancer treatment, shared the latest experimental and clinical data to find the best ways to treat cancer.
Although there is already an availability of gene-level data, the exchange initiative will open up greater access for cancer centers, giving them more time to find treatments because duplication will be avoided.
The Kolín-Čáslav health data and exchange network, based in the Czech Republic, is considered a European good practice case study for the benefits of the electronic health record (EHR). The network covers patient data sharing between two hospitals and private practice doctors, delivering improved quality of care. According to a study, efficiency and care have improved, and consultations, examinations and care decisions are better informed, all ensuring that patients avoid unnecessary duplicate consultations with doctors and are actually receiving faster treatment.
In conducting the debate about data share, we need to remember the great extent to which data sharing boosts invaluable health research and care.