I’ve booked my flights and accommodation, all ready for a great couple of days down in Christchurch at ETIH.
I am planning a session on the future of data governance from a clinical perspective. Would be keen to hear from this group about any aspects of data governance people are interested in learning more about. I can then ensure I include that in my presentation.
My initial planning for the presentation includes providing an overview on the importance of having clinicians involved in data governance,
what does this mean for patients and clinicians,
Maori data sovereignty,
health data legislation,
how data can improve Pt outcomes and how governance is fundamental to this,
health data standards that are useful for clinicians to understand,
involving consumers.
self-directed learning to increase understanding about clinical data (such as SNOMED courses),
how to get involved,
what to do if your organisation doesn’t have an established data governance process.
Look forward to your feedback and ideas so this can be a really useful presentation at ETIH for clinicians
This looks a great list and I totally agree about the importance of having clinicians involved in data governance. Another aspect you may wish to consider is the governance of how the data is used to improve health care and the role of the clinician in data analysis in that process. You could view this as the role of the clinical data scientist to bring their domain knowledge and experience to help interpret any statistical analysis. If this role is important now, then it will be critical with the rise of AI and machine learning models and their introduction into clinical practice.
I am also booked for ETIH , so I will be able to learn from your presentation.
Great idea Grieg to think about future roles that we will require. Having clinicians who are skilled in data science and analytics and clinical data architecture will be vital.
Will definitely include that in my presentation and look forward to catching up at ETIH
Karen, this looks very topical and interesting - I look forward to joining in your session.
I’d love you to address the tension between data governance and real world utility / practicalities. This is a constant issue where I am currently based, and many worthy projects have been inappropriately hobbled by an insistence on unrealistic and impractical data governance ideals.
Greetings from Eastern BOP, Important discussion and thanks for advancing the conversation. My 2 cents:
Maori data sovereignty must be addressed, and I suspect will involve Treaty of Waitangi (TOW) elements, though I’m personally not up-to-speed with this. I do know ‘contemporary’ claims are now before the TOW Tribunal and this includes health. The contemporary claims are because the historical claims have clearly not rectified past injustice given the huge inequities still persist, clearly evident in health statistics. I understand their may be a group at Ministry of Health looking at Maori data sovereignty, so might be worth getting their input? I’d be happy to do email introduction to who I think could point you in right direction, if this is of interest.
As a GP, I’m increasingly certain that data sovereignty must be with the Patient (which is all of us), as the key person to determine who has access. I appreciate the issues of patients not disclosing information and how this can impact health care, but am certain this is a small (though hugely annoying) part of our patient population . . . and, I think this matter needs to be addressed. However, the overall topic of data sovereignty should not be hijacked by this subset of (annoying, manipulative) patients. I also think data sovereignty is about control of access to data . . . and is NOT data management. I have control of which information I access and use on the internet, or which phone calls I make, but I am not an internet provider or telecommunications service provider. Patients should not be expected to manage, maintain . . and certainly not host, their health data because this will cause huge inequities between those with high IT access/literacy, and those who do not. In conclusion, I’m currently thinking patient data sovereignty is all about enhancing patient portals, where patients can have sovereignty over their health data via their portals. If this were to genuinely happen, the patient portal features should/would have to be the focus of health IT product development, rather than EHRs. EHRs, as they currently exist, I think should become data repositories that are managed for patients, who access and ‘control’ via their patient portals, with providers accessing through appropriate apps/portals.
Great thoughts Emily- and welcome to the new world of health informatics. Fantastic to see your enthusiasm.
I will definitely look at Pt data sovereignty- who ‘owns’ the data etc. and am already planning on including Maori Data Sovereignty- and what are the implications for clinicians
Hi Karen
You might find https://www.temanararaunga.maori.nz helpful and the contacts to talk to would Dr Rawiri Jansen and Dr Tahu Kukutai.
My email is icon@i-con.tech if you want to email me.
Mana
Also including consumers in data governance and implementing dynamic consent processes will be foundational steps to supporting patient data sovereignty. I’m not sure our data processes are mature enough yet to fully support patient data sovereignty- but agree that we need to be working towards this.
Yes, just got told I have funding to attend. Is the Informatics network meeting on 21 or 22? Im just sorting flights and times. Also where are people staying?
Karolyn has a 10 min slot to talk about the HISA/ACHI deal but I think we will need more time to discuss it as ACHI fellows/members.