In the latest episode of Impetus Digital‘s Fireside Chat, I sit down with an all-star panel of industry leaders who are also members of TECHNATION Health. I had the pleasure to discuss the ins and outs of the digital health economy with Elaine Huesing (Executive Director at TECHNATION Health), Peter Jones (Industry Lead, Canadian Healthcare at Microsoft Canada), Susan Anderson (Senior Health Policy Advisor at TECHNATION Health), David Thomas (Managing Principal, Global Health at TELUS), and Susanne Flett (Strategic Advisor at Healthtech Consultants). We discussed a variety of timely topics, including cybersecurity in hospitals, the digital health economy, and innovative technologies that can increase the wellness of the population. We also explored how TECHNATION is working to facilitate the development of a robust and sustainable digital economy in Canada, as well as their “five pillars of focus.”
Here is a sneak peek of our conversation:
Q: What are your perspectives on data ownership, including the monetization or the democratization of data as it relates to patients owning it, and what is the place for things like blockchain in this?
Peter: You’re touching on a very sensitive topic because a lot of physicians would say that they own the data, because a lot of it is sensitive notes on the patient. If you’re dealing with mental health patients, should they have access to the data? There are arguments on the other side that say that all patients should have access to all their records and be able to [own the data], but you know, it could cause harm if a patient reads what a physician writes about them and their diagnosis. You have to be sensitive to the use of that data.
But as David brought up earlier, if you start looking at genome sequencing and getting access to larger datasets, there’s a benefit to the industry and a benefit to the patient by allowing that data to be shared amongst researchers. The larger the datasets, the better the research. It’s a sensitive topic, but there are a lot of areas where it is important to allow that, potentially deidentified, data to be used to enhance things like precision medicine. A lot of pharma companies want to get access to data and they will pay for that data to be able to help them with a lot of their trials and so forth. Every situation is a little different.
In terms of blockchain, we’ve developed a lot of technologies around consent management using blockchain. That may be a way to solve some of those issues. As a patient or an individual, do I want to give consent to have my data used in a certain way? If I could benefit and be paid for that from a pharma company, that would be great for me personally and I may help further research. I think, with blockchain technology and consent management, it can be managed more effectively and you would have the ability to have your data withdrawn from a study if you wish. I think there are technologies that will now enable us to manage that more effectively, and I think there are good things happening in that space.
Susan: The privacy health legislation does not talk about ownership of data. It talks about custodianship of data, collection, use, and disclosure of patient-identified health information by custodians, and that’s generally your health providers and the health authorities in the hospitals. I think in a very simple fashion, you would say, ultimately, the patient is the owner of the data. So that’s where the consent concept comes in place for clinical trials or alerts or data-sharing opportunity. More and more as the patients/consumer have access to their digital health information, they have the ability to flag that information to be shared in a larger space. So this is one of the trends that is very much in play in terms of getting the public support to recognize the value in these larger data assets or data lakes, and in terms of propelling some of the innovation in analysis and algorithms etc. that patients are involved in.
Peter mentioned the deidentification of data and there’s risk associated with that. We all understand that it’s about the risk mitigation approach and how you de-identify the data so that it’s not reidentified downstream where you might be able to link other data assets and be able to recover or identify who the individual is that the patient data belongs to.
There are some new approaches around synthetic data generation. For example, where you analyze real patient data, you can create a synthetic dataset off of that that’s not real data, but it has the same characteristics as a real dataset so that it behaves the same way statistically and you can use it for R&D purposes or development of new software. There are some really innovative concepts that are coming on that front.
For more of our discussion, you can watch the whole Fireside Chat with TECHNATION Health, or listen to the podcast version, below.
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