This article is a submission by Tim Blake, Managing Director of Semantic Consulting. He can be found on Twitter (@timblake1978). You can join PPAHS’ ongoing efforts to find and disseminate best practices in patient safety by submitting an article here.
Sharing data in healthcare is hard. Way harder than it should be.
The lack of willingness on the part of some healthcare providers and health IT vendors to safely and easily share patient health information with patients and other health providers is an unacceptable position in our increasingly digital age.
In some cases, however, the lack of sharing has more to do with paternalistic culture and attitudes than it does with having the technical ability to share patient health data. As a former CIO of a State health system in Australia, I’ve met a number of physicians who maintain that they own a patient’s health record, and will share only what they believe the patient needs to know.
Fortunately, this attitude is increasingly rare, and the majority of physicians recognise that high-quality, transparent patient health records featuring accurate, structured and clinically-coded data is part of delivering high-quality care.
Once we have navigated the complex dynamics of the desire to share patient information, the challenge becomes how to safely share data between health providers using different IT systems and operating in different clinical contexts.
Interoperability in healthcare is ultimately about being able to share data and have confidence in the fact that the author and users of the data mean the same thing by it. Failure to do so can cost lives.
Medications: a matter of life and death
If this seems a little abstract, let me give a concrete example. In Australia, which has a population of approximately 25 million people, there are an estimated 2 million Adverse Drug Events (i.e. patients taking the wrong medication, or the wrong dose, or a medication that interacts with existing medications, etc.) each year. These result in approximately 250,000 emergency hospitalisations, and an estimated 10,000 deaths each year. This would make ADEs one of the leading killers of Australians.
Many of these deaths are preventable.
Much of this harm is due to the way that we share (or don’t share) data within the health system, with patients taking large numbers of medications (i.e. the elderly and chronically ill) more likely to suffer.
Much of the medications data that we share is written in natural language, lacking structure and rarely coded using standardised clinical terminologies. As a result, it is often very difficult, sometimes impossible, to know exactly which medications have been prescribed to a patient, or at what dosage.
Diligent physicians will regularly undertake a ‘medications reconciliation’ process with complex patients, but few have this amount of time to spend on a regular basis. Consequently, it is not uncommon to find that patients on a number of medications have been prescribed the same drug two or three times under a different brand name. This can be the result of visiting a number of different primary care physicians and hospitals who don’t have access to a shared patient record.
Towards a future of patient data sharing and interoperability
If we are to reduce the inexcusable amount of patient harm that is caused through incomplete data from multiple sources, there are a number of key actions that we need to take:
- Patients must own their health records – There is much current rhetoric from health systems about ‘the patient at the centre’. However, if this is to be truly meaningful, patients must be given full control over their health records. Nothing should be written about a patient without them being able to read it. Nothing should be shared without patient permission. Nothing incorrect should be allowed to go uncorrected.
- Patients must demand that providers share their data – Gone are the days when it was acceptable to refuse to release a patient’s data as a means to retain their business. Taking patient data hostage is not a business model. Patients have the right to demand that their data be shared, with themselves and other providers.
- Health data must be captured and shared using appropriate standards – Patient health data must be captured in a structured way, using appropriate standards to code and share, so that health providers can be confident that they mean the same thing. Appropriate standards include (but are not limited to) FHIR, SNOMED CT and LOINC.
- Clinical decision support systems must act as another line of defence – Once we are armed with structured and coded data, clinical decision support systems can provide physicians with an additional line of defence against medical error. For example, through the provision of automated medication reconciliation processes, significantly reducing the likelihood of Adverse Drug Events by checking for duplicated medications, drug-to-drug interactions, etc.
The goal of interoperable health data is not a technical need. Ultimately, the safe and efficient sharing of patient health data between health providers and organisations is about patient safety.
Tim is an engaged patient and carer, and the Managing Director of Semantic Consulting, a consulting firm focused on leading digital change in healthcare. Tim is passionate about enabling engaged patients, activating carers, the use of mobile solutions in health, consumer health technology, precision medicine, consumer genomics and many other components of Digital Health that are disrupting healthcare in positive and exciting ways.
He has formerly held roles as Chief Information Officer of the Tasmanian Department of Health and Human Services (and member of the Tasmanian Health Executive Team), Director of Rural eHealth Strategy at New South Wales Health and Strategic Advisor at Australia’s National eHealth Transition Authority (NEHTA) and the Commonwealth Dept of Health.
You can join PPAHS’ ongoing efforts to find and disseminate best practices in patient safety by submitting an article here.