… I now believe that the only way to significantly improve clinical data quality is by opening up EMRs and Clinical Information Systems to patients and caregivers, allowing them to read all that is written about them, and to flag incorrect data. In addition to the transparency of knowing what is being written about them, patients and their caregivers are a vital line of defence in protecting against medical errors that arise from poor quality data.
As I work with health innovators across Australia and the United States, I’m noticing a trend. Slowly but surely, providers of Electronic Medical Records (EMR) and Clinical Information Systems are starting to open up their systems to patients and caregivers, sharing large subsets (or even all) of their clinical data.
I’ve previously discussed the need for data with high structural and clinical quality in order to support a new architecture for our future healthcare system. A healthcare system where health providers are empowered with clinical decision support systems that enable the rapid dissemination of clinical knowledge to the front line. A healthcare system where patients are empowered and informed, having a role in decision making about their care. A healthcare system where intrinsically motivated caregivers are given the tools and informed required to act as the first line of defence for their loved ones. A healthcare system underpinned by high quality data. And without this quality data, none of the aspirations above can be reached.
But how do we achieve the data quality required to support this new architecture for healthcare?
I used to believe that it was possible to incentivise health providers to capture this high quality data by themselves. In fact, most of our health system still believes this. However, through experience and observation, I no longer believe that our current trajectory will result in data of a sufficient quality to support many of the things that we wish to achieve with digital health. Even with financial incentivisation for data quality, health providers would remain extrinsically motivated to improve their data quality. I don’t believe that is a powerful enough motivation to drive real change.
After much work in this area, I now believe that the only way to significantly improve clinical data quality is by opening up EMRs and Clinical Information Systems to patients and caregivers, allowing them to read all that is written about them, and to flag incorrect data. In addition to the transparency of knowing what is being written about them, patients and their caregivers are a vital line of defence in protecting against medical errors that arise from poor quality data.
Now don’t get me wrong, I’m not suggesting that patients should be allowed to edit data in EMR systems. I am, however, saying that they should be given the opportunity to review key data (such as problem lists, diagnoses, allergies, adverse reactions, current and past medications, etc.) and flag incorrect data for fixing. Many patients and caregivers are deeply motivated to get this data correct. Many patients and caregivers have the time to check. All patients and caregivers deserve this opportunity.
This isn’t a new idea of course, and I must acknowledge the excellent work done by the OpenNotes initiative in the US. Unfortunately this hasn’t yet caught on in Australia.
I should, however, recognise that opening EMR systems to patients and caregivers is a significant cultural change for many clinicians, particularly those towards the back end of their career. Having been a CIO in a public health system, I’m familiar with a range of clinical views on this topic. At the very worst end of the spectrum their are still some (generally older) clinicians with the view that “I own the patient’s data and will tell them what they need to know” – the extreme paternalists. At the better end of the spectrum we find many clinicians who are inclusive and happily share information, clinical notes and decision making with their patients. In the middle we find the majority, many of whom have already had to modify their behaviours with regard to medical note taking in recent years.
Let me give you an example. As a CIO, when I was involved in rolling out an Electronic Discharge Summary system (allowing GPs and patients to view Electronic Discharge Summaries), we found that one of the most frequent comments from clinicians was “Hang on, wait a minute. You mean that patients might actually read what I’ve written about them? In that case I might need to change what I write…“. Many clinicians were used to writing poor quality shorthand, laden with acronyms and often with things that they would never have wanted patients to read, e.g. FLK. Look it up. And yes, I’ve really seen that written in medical notes.
But the old world of paternalistic healthcare is passing away. Not only will opening up EMRs to patients and caregivers drive transparency, it will also work against paternalism and act to support the significant and rapid improvement of clinical data quality. We just need to get on with the process of opening up…