By Dr Ana Luisa Neves, General Practitioner and IGHI Research Fellow
The promise of healthcare data is staggering – and now, we have the information and tools to use it effectively that we’ve never had before.
Electronic health records can contribute to making life-altering changes in patient education and treatment. We’re increasingly realising their potential as a powerful resource for researchers and policymakers. Applying big data analytics in electronic health datasets can help us better understand patient needs. We can identify underserved or excluded groups and therefore contribute to delivering safer, better, and more patient-centred care.
However, much still needs to be done to increase the availability of healthcare data before these goals can be realised. Current barriers to access and sharing could include public buy-in and a lack of engagement by healthcare providers. Worldwide, governmental initiatives have been advocating for the use of electronic health records to widen access to patient data.
In 2013, for example, NHS England launched Care.data with the same vision of opening up patient data, including to researchers and organisations outside of the NHS. Yet, progress of the programme stalled for a variety of reasons and was finally abandoned in 2016. It was criticised due to the lack of information about the benefits of data sharing, and general concerns about data security.
Early engagement of healthcare professionals is key
What have we learned from these experiences? One of the key messages was that although governmental endorsement is important, it is not enough to ensure successful implementation of data sharing initiatives.
To be effective, any communication around data sharing must get healthcare professionals on board with the policy early. They should be encouraged to make the case for data sharing to their patients. At the frontline of care delivery, they’re often the first and closest contact point for patients to discuss the purposes and the benefits and risks of sharing healthcare data.
At our multi-stakeholder event in 2017, “Sharing Data, Shaping Views”, John Norton, Patient, Public and Carer Representative aptly said, “nothing will ever replace a one-to-one explanation by a healthcare professional”. As such, healthcare professionals can have a critical impact on patient awareness on this subject, and ultimately on the availability of healthcare data.
And that is why it’s so important to understand their perspectives, listen and address their concerns – and engage them early and meaningfully in the design and communication of data sharing processes to patients.
Acknowledging the concerns of healthcare professionals
In our most recent paper published in the Journal of Medical Internet Research, we explored the perspectives of healthcare professionals across England on using healthcare data for secondary purposes, i.e. those that aren’t directly related to patient care, such as research.
We interviewed 30 individuals from a variety of roles in both primary and secondary care. Our results highlight that healthcare professionals widely acknowledge the benefits of using healthcare data to understand patient needs, and to improve and tailor the planning and delivery of healthcare services. Yet they still have concerns on a range of issues including the accuracy of the records, patients’ willingness to share data, and the overall lack of understanding of current policies on data sharing.
Translating evidence into change
Through our research, healthcare professionals expressed that they felt the need for clear policies to assess and monitor data quality. They suggested using established guidance to obtain informed consent, and promote a strong cybersecurity culture. To achieve this, both infrastructure investment and culture change are crucial to minimising both accidental and malicious data breaches that could threaten patient trust and safety.
To be successful, decision-makers must listen to and incorporate these views into national and international data sharing policies. Strategies to overcome the concerns will be critical to increase public awareness and patient buy-in, and therefore data availability, if we are to fully embrace the potential of using healthcare data.
Read the paper, ‘Health Care Professionals’ Perspectives on the Secondary Use of Health Records to Improve Quality and Safety of Care in England: Qualitative Study’ in full here.
Dr Ana Luisa Neves is a General Practitioner and Research Fellow in Clinical Analytics and Patient Safety at IGHI’s Patient Safety Translational Research Centre.