Clinicians and healthcare professionals find themselves at the very beginning of the health data processing chain; they are one of the first in line to process and collect health data. This makes clinicians and healthcare professionals not just caregivers but also one of the first guardians of health data. This is why I think it’s extremely important that they not only understand the frameworks and principles surrounding the governance of health data but actively take part in the development of information governance infrastructure.

As both a medical student and a Trust and Transparency intern with HDRUK, I have had the chance to see health data governance from two perspectives. This has allowed me to gain a deeper understanding of the IG behind health data. In my internship I contributed to the development of a toolkit designed to bring together existing resources into one accessible platform.

Health data can be defined as all personal data relating to the physical and mental health of someone. The core principles of information governance such as the GUARDS principles, the FAIR principles which emphasise making data findable, accessible, interoperable and reusable, the CARE principles which are designed to complement the FAIR principles and guide the inclusion of indigenous people in data processes and the five safes which consider safety across all people,  project,  settings, data, and outputs all tie into and link to NHS guidance such as the Caldicott principles. Together these principles support a culture of transparency, accountability and respect for patient privacy.

From my internship, one lesson that stood out was that while we may not all be part of an IG team we are all in some sense data guardians. Every decision we make when handling sensitive data has implications for data safety and even the smallest mistakes could have serious consequences.

The role of clinicians is much more than just making sure patient data is appropriately safeguarded. As health data organisations such as HDRUK continue to increase the level of public involvement and engagement in health data initiatives, I see an opportunity for the bridge between clinicians and health data governance to close. Closing the gap between the two would allow healthcare to be more data driven while ensuring patient voices are still heard, ultimately improving patient outcomes and experiences.

Raising awareness is crucial for the future of health data, for this to be done I think governance of health data should not be seen as a quick box to tick but should be embedded into the culture of safe and effective care. As health data is not just information it represents much more than that; transparency and collaboration with patients and the public can build confidence in health data initiatives. If we embrace our roles as data guardians and engage with patients as partners we can continue to build trust, enable underrepresented groups to participate to ensure health data is used to improve outcomes for all.