Thanks for sharing this, Colin and Jan. There’s a lot to think about in terms of standards and business. 

From my perspective, the past is all about institutions and the future is shifting to individuals. Individual patients, individual clinicians, and personalized services and devices available to both, including AI. 

Individual and personalized services are indistinguishable from medicine in general and are shifting to digital online delivery for many good reasons, accelerated by the pandemic. 

Unfortunately, the standards and business models are still focused on institutions and institutions will add friction and cost to personalized medicine. Nordic people trust their institutions more than people in other parts of the world. This may not work in their favor long term.

- Adrian

On Mon, Aug 3, 2020 at 6:14 AM Colin Wallis Kantara <colin@kantarainitiative.org> wrote:
Folks
Following the UMA webinar, and a comment raised there about KANTA (the Finnish Healthcare spec that looks like handcrafted OAuth on a first glance) Jan Leindals reached out to me.
Jan's Diabetes organisation is the recipient of funding from Kantara Europe's NGI_Trust consortium.
I have encouraged him to connect with you all here.
Kind regards
Colin
.................................................................................................

Thank you for a very interesting discussion in US/CAN which is also relevant in a Nordic context.

 

The reference to Finland was about the PHR data repository, Kanta Services and not UMA. However, I found this paper though, https://www.kanta.fi/documents/20143/91486/PHR+authorization.pdf/9fdb48d0-a6c8-0bc6-10ab-35495ca030b4

 

In the Danish healthcare system the PHR data repository is a missing link.  In Denmark the citizen do not get data rights to their health data (EHR) in the public domain – it is fully controlled by the government by using new national [digital identity] standard,  in progress: https://en.digst.dk/media/14836/english_fremtidens-infrastruktur-for-digitale-identiteter.pdf

However, it is very  immature how this will be implemented into the local EHR systems.  This system consist of many sub-systems that is being integrated into the EHR system and no standard for UMA – each subsystem make their own standards.

 

For diabetes the healthcare system has a gap to control of the use of data from medical devices where multiple vendors have their own services. They are typically hardware inventors and their service lack use of identity and permission control. I promote that the PHR from medical device data and other personal behavior data will be implemented as a new data repository where the citizen have all the data rights and it open for innovation for all actors and new standards for identity and permission control.

 

To solve the gap for in Denmark, I am very interested to know more about the UMA protocol and if a standard implementation of UMA can be integrated into the Tidepool ecosystem [part of Jan's project funded by NGI-Trust] as a showcase for diabetes as a use case of UMA in the Danish Healthcare system.

 

Some discussion papers in Denmark/Nordic that might have your interest:

http://www.hl7.fi/wp-content/uploads/Nordic-Reference-Architecture-for-Personal-Connected-Health-Technology-2017-03-19.pdf

http://nordichealth2030.org.linux14.dandomainserver.dk/wp-content/uploads/2019/11/07062018-Scenario-B.pdf

https://www.nordicinnovation.org/2019/nordic-health-2030-magazine

http://www.digitalhealthrevolution.fi/uploads/2/4/1/5/24155377/person_centric_data_management_models_and_opportunities_in_health_care_sector_full.pdf

 

Best, Jan

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