Well over a century ago, health records were created by physicians as a personal reminder about a patient, which they could read when next seeing that patient. These also became a record of evidence of the care a doctor had given if challenged about their professional judgement and treatments. As healthcare has progressively involved a wider range of professionals, such as nurses, physiotherapists, pharmacist, dietitians etc., the records have shifted emphasis from being a personal record by a single clinician to being a tool to support shared care. This has meant that record folders shifted from being the personal property of a doctor 100 years ago to a healthcare organisation’s resource to support its staff in delivering good care to each patient. Healthcare organisations have gradually woken up to the opportunity to examine collections of patient records in order to determine the quality of the care they are giving to patient groups, and to investigate any issues to do with risk or poor health outcomes for some patients.
Nowadays the challenge is how to share access to health record information between organisations. This has become more difficult, and also more important, due to the growing complexity of healthcare and treatments and the widening of the teams that might be supporting the care of any one patient. This might be between a hospital and a general practitioner, or within a health region within which patients might be under multiple specialist centres for different diseases. Since most healthcare organisations have different ICT systems, with different electronic health record databases and different content in them, sharing this information has proved challenging. This need has given rise to standards for how data can be communicated between systems to enable accurate sharing between any two healthcare organisations caring for the same patient.
It is probably only in the last couple of decades that many other health system organisations, such as public health agencies and research organisations, have recognised the value of reusing health data on a significant scale. This is because health data is now mainly collected electronically, and more of it in a well-structured form. There is huge societal value from combining data from multiple care organisations, and potentially other data sources beyond health, to support a wide range of analysis purposes, whether for quality improvement or for clinical research. This has further fueled the need for standards, and accelerated the development of more sophisticated standards to enable data to be shared meaningfully and securely across countries.
The last but not least actor to mention is the patient. Patients have for many years been able to read their health records in some countries, and more recently been offered a patient web portal by their healthcare provider through which they can sometimes order repeat medications, view test results and book appointments. However, disappointingly, it is only in recent years with the growth of mobile phone apps that patients can have on their own mobile devices, sensors which they can wear and other technologies they can utilise. Capturing and integrating this patient created data can give them good use of their own health data ecosystem. These ecosystems increasingly include prevention, wellness and lifestyle information, not only illness related data. There is a growing recognition across all of the actors in healthcare and research that patient generated data provides:
- a unique, detailed and valuable insight into factors that may cause disease
- help to manage it better
- provide very detailed information about how effective their different treatments are.
We are just embarking upon this new reason for promoting standards: for patient and healthy citizen apps and devices, and to connect to these to the more traditional health data systems. We are starting to create a kind of digital citizen, which is the totality of all health and health related information about a person that he or she, and others, can use under agreed rules, for the benefit of all.