22.10.13
Including patients in data governance is ‘essential’
BCS Health has called for a greater role for patients in information governance, as it publishes its response to the Caldicott2 review.
The NHS should move towards the widespread use of privacy-enhancing technology and tighter governance and transparency where data is held centrally. More granular options for patients to opt-out of data sharing is also recommended.
Dr Justin Whatling, chair of BCS Health, explained: “Patient information governance is an increasingly important topic because of the urgent need to share and integrate patient data to improve care and care commissioning, power research and to empower individual patients.
“However, we believe there is still more that could be done and in ensuring that patients play a role in the governance of their information and to this end, we have made our own recommendations to supplement those in the report.”
Ian Herbert, vice chair BCS Health added: “As the Chartered Institute for IT, we believe that inclusion of patients in the governance of their data is essential in ensuring transparency and maintaining the trust that they have with their clinicians. Empowering the patient with the required knowledge of how their data will be used is practically and ethically crucial. De-identifying data before it leaves its origin will greatly reduce patient concerns about unconsented secondary uses of their data, and have an insignificant impact on the ability to link data from different sources and its utility for secondary uses.
“For the relatively small number of patients who are still concerned, allowing patients to opt out of their data being used for secondary purposes is appropriate. However given the importance of patient data in care and research we should aspire to provide more granular opt outs. Patients should be able to opt out of use for research, risk stratification or service audits, rather than of all sharing.”
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