Sarah Markham: #DataSavesLives—Patient participation ensures data are accurate and useful

Patients’ data, how they are used and who they are shared with is a hot topic, and ever more important in modern healthcare. Concerns around data security are understandable, but in my view we must not ignore the benefits that sharing patient data can have on quality in healthcare.

Healthcare Quality Improvement Partnership (HQIP) is commissioned by NHS England to promote quality in healthcare, and in particular to increase the impact that clinical audit and clinical data registries have on healthcare quality. HQIP are currently working with Understanding Patient Data in their mission to explain how and why data can be used for care and research, what’s allowed and what’s not, and how personal information is kept safe. The HQIP service user network (HQIP SUN) forms the Patient and Public Involvement arm of HQIP and is seeking to support this process and reassure people who get involved in the National Clinical Audit programme about the importance of public and patient participation in order to get accurate data which can lead to improvement and change.

The National Data Opt-Out programme allows people to opt out of their confidential patient information being used for clinical audit, research, and service provision. In July members of HQIP SUN met to explore ways to encourage people not to opt-out. There was general agreement that the National Opt Out is giving people a choice which is important, especially in the midst of public mistrust regarding how data are used. There was a feeling that we need to respond to these anxieties and look at how best to provide reassurance.

In order to fulfil this aim, HQIP plan to work with their audit providers to highlight case studies which demonstrate the impact of each of the National Clinical Audit and Patient Outcomes Programmes (NCAPOPs). HQIP SUN will promote awareness of the #DataSavesLives campaign via the patient networks to which the SUN members belong. In response to detailed feedback from HQIP SUN, Understanding Patient Data are now working on bringing together better information on ”who” sees the data and makes decisions on how it is used. In addition UPD has published five case study videos giving real examples of how data has saved lives. 

However, there are many barriers within the healthcare system which need to be overcome in order to optimise the use of patient data. Professionals as well as patients have concerns about how and why data are being shared. They are often unsure about the potential benefits and are cautious due to the complicated nature of information governance structures. These anxieties can be formidable obstacles to the use of data-sharing in healthcare.

Public and professional trust in the system is crucial to the entire process. To build this trust, the government, social services and healthcare organisations responsible for sharing and using data need to demonstrate that their processes are robust and secure, and clearly communicate the benefits to people. Currently there are many gaps in data provision, often because it is not being collected, or isn’t focused on meeting patient needs. The process of collecting and sharing data needs to be embedded in routine service provision and supported by improved digital information technology.

Research on the public’s views on using administrative data for research purposes, suggests that most members of the public express opposition when asked directly if they support their data being shared. But the majority become more ambivalent where they can see direct benefits to themselves from the process.

The Insight research programme found evidence that the National clinical audits and patient registries can offer real insight into the quality of care provided by the NHS and be powerful tools for improving it. Most NHS data sets focus on how patients use services (for example, emergency admission rates), whereas the audits and registries contain detailed information on clinical outcomes and care processes. Recognising the potential of the audits and registries, the Insight research programme has launched five projects each aimed at using audit and registry data to improve the quality of healthcare. The projects focus on the application of AI to detect and interpret variations in care; on the use of novel data linkages to explore the full patient pathway and how variations in practice affects hospital admissions; and on engaging patients, clinicians and commissioners in routinely collecting electronic patient reported outcomes (ePROs) data using a national registry. Clinical Audit Awareness week (CAAW) which is happening the 19th-23rd November gives HQIP, HQIP SUN, and other organisations involved in healthcare quality improvement, the opportunity to send out a positive message about clinical audit and data sharing and their role in improving healthcare services nationwide. HQIP will be encouraging trusts to showcase their audit and data-sharing success stories through on-site events and nationally via social media and other online activity using #CAAW18, #DataSavesLives.

Sarah Markham is an academic mathematician and patient representative currently pursuing a second PhD in theoretical computer science. She is a member of the BMJ Patient Advisory Panel. Twitter: @DrSMarkham

Competing interests: None declared.