What other ideas do you have on health data reuse?  

De arts moet ondersteuning bieden, mondelijk. Er moet een duidelijk akkoord zijn over het gebruik van data en het moet duidelijk vastliggen waarvoor het gebruikt wordt. 

Het doel moet duidelijk zijn. Er is een verschil tussen data gebruiken voor een behandeling en hergebruik van dezelfde gegevens. Individuen moeten altijd toegang kunnen hebben tot hun eigen gegevens. 

Oppassen voor profilering. We hebben angst dat onze gegevens tegen ons gebruikt zouden kunnen worden. Wij behouden het beslissingsrecht over onze data. 

Transparantie is heel belangrijk. Bijvoorbeeld: wij willen weten dat de overheid google betaalt voor locatiegegevens.

Gegevens moeten gebruikt worden voor het bepalen van risicofactoren, risico-analyse, het bepalen van strategieën tijdens een epidemie, de spreiding van patienten over ziekenhuizen en ziektebeelden en zo'n zaken om het beleid te informeren.

Data mag gebruikt worden om betere behandelingen, medicatie en algemeen onderzoek naar ziektes zoals COVID-19 te doen.

What it is not where it is

With more content-centric approach we can solve a lot of issues related with data portability, especially across different jurisdiction (e.g. rare disease data). To achieve that we need to think about base properties of the data: - semantic (object integrity) so we know what it is - authentication (factual authenticity) so we know where it comes from, who created the data Based on that we can reason about veracity and secure the data in transit without any dependency on specific network or system within singular jurisdiction. Data is like electricity it has value when it flows. Enabling those flows is crucial aspect of our economy. Without accurate data exchange is hard to tackle problems within health care. Attached diagram present accurate data pyramid and explain characteristics of the data at information system level and human level.

Dynamic data structures

Many useful information during diagnosis and therapy are not collected. Maybe worth to explore solutions/technologies that enable dynamic data farming during medical documentation creation. Example: clinonote.pl

Biometric technologies pose particular risks and harms to privacy and free expression, and may lead to discrimination (both through their differential accuracy for different demographic groups, and through their uses).

I believe health data gathered in the ways you suggest will be sold to the highest bidder. The motive will not be purely financial but will also be used to discriminate against individuals. Recent history and ongoing digital developments make this clear. The role of citizens who care about integrity, confidentiality and freedom is to say categorically no, you cannot reuse my personal medical data for any purpose. 

Don't trust big pharmaceutical companies such as biotech not to harvest the data and use it for commercial purposes 

Data sharing especially for things like genomics needs to be developed with international support. International sharing will be useful.

We need to explore the factors that deter people from donating to for-profit researchers.

Knowledge needs to be built. People are more willing to share say DNA and medical information when they actually know about these concepts

Mandating inclusion of data could lead to mistrust and prevent some people seek medical help.

How do you define common good? Need a criteria.  Making people pay extra for healthcare would create a two tier system and exacerbate health inequalities. 

Integrated Care Systems (ICS's) to cover health and care data - wider determinants - new policy cover both?

need common governance / standards / rules & narrative (language) across the ecosystem to ensure clarity and simplicity for public

The value of health data reuse is primarily around local service provision - and that is where the trust is maintained. Federation (rather than duplication) of these capabilities is important

How to manage the tensions of public expectation around shared data between public sector from NHS

In the UK citizens don't necessarily have access to their healthcare data (unlike facebook) the GP / hospital has the record - makes it slightly disconnected

We need to get onto the ground of social value of data use to overcome the fears we have.

What we ask the general public about is different from what we would ask digital professionals.

Skills needs to include not only data use practices, not only data protection practices, but critical data practices. Essential skills include awareness of broader data ecosystems, how that fits into social power structures, and being able to makeeffective judgements about the way information is being presented about data use.