Dr Penny Kechagioglou, Consultant Clinical Oncologist, Chief Clinical Information Officer and Deputy Chief Medical Officer, University Hospitals Coventry and Warwickshire NHS Trust
The UK digital transformation wave is mainly characterised by the roll-out of electronic health records and is an opportunity to transform patient care by collecting and analysing patient reported outcome measures digitally. A recent study at the European Society of Medical Oncology open journal (Modi, 2022) showed that patient reported outcome measures are predictive of cancer patient treatment response and quality of life for physical and mental parameters. The knowledge of patient reported outcomes (PRO) and experience (PRE) measures can be valuable in the monitoring of individual patient symptoms in clinic or remotely in the community and also for aggregating and interpreting population health data.
The value of reporting patient outcome and experience measures within electronic health records and through patient portals will come from relating PRO and PRE measures with particular diagnoses, treatments, patient demographics and population health metrics. Such information can help clinicians prioritize quality improvement initiatives and can generate research on targeted and personalised treatments. Unlike other investigation results we capture within patient records, PRO and PRE measures are not routinely captured within electronic health records. Some of the reasons behind this gap may include the lack of appropriate integration of such data within the design of electronic health record sand also the lack of standardised metrics to report.
The inclusion of patient reported outcomes and experience measures in the shared decision-making between clinicians and patients is key to the provision of patient-centred care and the continuous improvement of services. The focus should be on those patient cohorts and populations who are vulnerable and who have no easy access to report their outcomes, because of language and cultural barriers or digital illiteracy. The equitable clinical outcome recording amongst diverse populations will enable personalised and unbiased decision-making regarding care. PRO and PRE measures should cover diverse populations to ensure no action is made on biased data leading to patient exclusion. This is also particularly important in the case of research and clinical trials, where we need to be mindful of data disparities that may lead to exclusion of high-risk patients.
"The knowledge of patient reported outcomes (PRO) and experience (PRE) measures can be valuable in the monitoring of individual patient symptoms in clinic or remotely in the community and also for aggregating and interpreting population health data"
Another application of PRO and PRE data measures is in the understanding of the impact of diagnostic and treatment delays, as in the case of cancer diagnostics and elective surgical procedures. Such data can feed into new or existing clinical prioritisation tools to enable more informed decision-making and risk management. The random and inequitable allocation of healthcare resources could then be replaced by patient-centred, evidence-informed and health equity assessed decisions on resource allocation.
Involvement of patients and end-users in design thinking and the roll-out of electronic health records would ensure that the right reported outcome and experience measures are collected and analysed in order to improve services and shape the development of new value-adding services. Outcome collection around usability of and experience from services can be targeted to ensure patient compliance to cancer screening and diagnostic testing, clinic and vaccination appointments.
PRO and PRE measures should be incorporated in the design and implementation of electronic health records, engaging patients and the public in the process. The integration of such data digitally needs to be exploited by dedicated clinical and analytics team to ensure their value is realised in terms of improving patient care. Aggregating data at the population level will enable population health management and improvement in care at system level.