I thought I’d share a fascinating article, as we think about the future that digital health records bring for people owning their own grant information and what that may mean for clinicians…
I’d love some discussion on this my mind is racing!
https://onlinelibrary.wiley.com/doi/full/10.1111/1467-9566.13294?s=03
This is a great article to shine light on a reality. This is my own experience, and what I found during interviews with doctors asking about how they use their electronic records to coordinate care. Medical care, after-all, is a human interaction . . just like CiLN. For example, to get CiLN to where it is today is much more than what is recorded here in discourse . … it has also required the synchronous/real-time information exchange that is not formally recorded (e.g., phone calls, zuis, in-person meetings, social gatherings, etc).
I appreciate there is a very different context when we are talking about health data vs CiLN data. Another analogy that comes to my mind, is that I would imagine a law firm has unrecorded conversations about cases that informs recommendations/decisions, but is not actually entered as part of legal documentation.
This also brings to mind the importance of a trusting relationship, good rapport, and ethics. As a doctor, we will be judged by our peers if there is a complaint. All jobs have choices to make and balances to strive for, and there is always grey. I think that considering the formal Electronic Health Record as something that is accessible to patients is 100% the future. That information also must stand on it’s own. It wouldn’t be defensible to argue, “well, I had a phone chat with x, or an IM with y, and that’s why I decided A”. The balance is how to formally enter the conclusion of the invisible exchange, if it’s going to impact care, into the EHR. If it never has an impact on care, then I don’t think it matters that it remains forever invisible.
It is a really good article Alex, and really got me chin scratching 
- but I wish that they summarised it more clearly!!
It sheds light on one of the unintended consequences of the enablement of record sharing with patients that digital technology provides. We are slow in medicine to embrace qualitative research, and this is an excellent example of why we should do so.
For me, it re-inforces that a facility to actively conceal notes from patients whilst communicating it to other prefessionals is actually a core functionality required in an EMR. It needs to be handled delicately and be discoverable by the patient if there is genuine need.
Some awesome comments. I’m a firm believer that a person is the ultimate expert on themselves and each health professional adds a gift of the bit of the puzzle. There’s a lot of valuable korero around social media the internet and self diagnosis (one what medical models considered “dangerous”, now I hope part of what we can see as actually helpful in a wellness/ prevention model of healthcare). I agree about the need for qualitative methodology with my studies surprising me down autoethongraphy!. But here’s a question. Should anything - even our predictions (hypotheses) be “hidden” from someone? We treat on best guess why not share it? Should we only record what is observable and measurable? Is part of our clinical value our best guess or “differential diagnoses”?
The clinicians in this paper and if you have tried to use open notes in practice across the diversity of patients, it becomes a struggle with the quandary between the two meanings to discrete. Being trustworthy as opposed to not causing offence.
Considering recording information that we both know is easy and easy to share. You told me this, and I found that on examination of you is not challenging. With appropriate tact, it is also easy to record and share your beliefs or conceptualizations even if I don’t share them.
What is more challenging is recording my beliefs that you do not share or might cause you either offence or anxiety. Especially, as the beliefs may not be correct but rather notes to a future self of things to consider, exclude or watch for. What a lot of this paper is about is the ways these clinicians tried to solve this problem in a public place. These clinicians want to be trustworthy and certainly not to cause offence but also want to be professional by being thorough.
That is a tricky balance.
Another thought that’s come to my mind, is there any use of blockchain in the Aotearoa health IT ecosystem? Is there a role for blockchain technology as an approach to data sovereignty?
My limited understanding of blockchain makes me wonder about a patient portal, excellently verified and linked to an individual, such as how MoH is kicking off My Covid Record, where the patient portal is the holder of the blockchain that follows where the NHI-linked data travels. I’m not sure if it’s possible for blockchain to work across multiple datasets, though . . . or, if it’s then possible for aggregate data that’s individually block-chained (as is required for population health, etc.). So, probably lots of technical challenges that I don’t know or understand, but just wondering if this is an avenue being considered at all.